GP won't prescribe me pregabalin. [Archive]

heather89

11-01-15, 02:24

Hi guys,

I just wondered if anyone has been refused a pregabalin prescription as I am rather confused as to why my GP wouldn't prescribe me it.

I have been suffering from depression and anxiety for 4 years now. Although the anxiety is something I have suffered for the majority of my life. I have managed to get over the depression through lifestyle changes thankfully. But the anxiety is still well and truly there and it is severely restricting my life.

I am currently on trazodone 100mg per night and have been on them for about 2 years. I tried citalopram but after 2 days I had to stop taking them as they made me feel like I was on some illegal drugs and I couldn't poweer through the side effects, they were way too much in my case. I have been prescribed propranolol a few times which seems to help with the symptoms but only on a temporary basis. I was prescribed ten 2mg diazepam once because I was in a total state, and the doctor wasn't happy about it. I had a 5 day script of zopiclone for sleep once as I suffer badly from insomnia at times. And again the doctor was not happy about me asking for this and said never to ask for them again. Then it turned out they had given me the recommended dose for an elderly person! Needless to say they didn't work.

So recently I have been in touch with an old friend and he suffers from similar issues to me and he has been on pregabalin 300mg and trazodone 50mg which he says works wonders for him. I had never heard of it so I psent weeks researching it and it seemed ideal for me. I have tried CBT, exercise, aromatherapy bath salts, self help books and so on but none of it has helped me. And I am SICK and TIRED of being controlled by this ridiculous anxiety. I have read of soooo many people from the UK being on this drug so I thought I would ask my doctor to give me a script. I even found an NHS document that says if you have tried at least 2 other medications for anxiety then doctors must prescribe this is the patient asks for it.

I went to the GP yesterday morning with so much hope. But I was shot down the second I mentioned the pregabalin. He said it wasn't really licenced for anxiety and said he would prove it with his medication book. He found it in the book and then evidently found that it is prescribed for anxiety so he wouldn't show me. He just said "look at all these side effects". I'm sorry but the side effects of the citalopram and fluoxetine he wanted me to go on were SO BAD! I thought I was going to die. I understna dpregabalin is expensive to the NHS when compared to SSRI's etc so I tried to negotiate and said I would come off the trazodone gradually. He still said no even when I calmly told him about the comparison reviews I read online. I left the GP crying. I am so tired of being the way I am. He gave me the same list of websites for CBT talk and counsellors. But on the NHS it takes so bloody long to get anything and as I have said, I tried it already and paid for it myself.

What are other peoples experiences in this? Pregabalin seemed like a way out for me, a way to be free. I am devastated and just want to live my life and be able to leave my flat and enjoy my life without worrying. I am fed up.

nicola1980

11-01-15, 03:00

Hi i also got refused pregabalin my my physc, she said it's not common practise to prescribe this for anxiety and also said about the side effects? I was gutted as have read so much good reviews on it for anxiety, im struggling majorly at the min with severe anxiety and panic and having to rely on Diazepam to help me through the day XX

hanshan

11-01-15, 03:32

Go back to your doctor with exactly the same request (doctors hate that). Print out the NHS guidelines on the treatment of anxiety (which includes pregabalin) and show them to your doctor.

http://www.nhs.uk/Conditions/Anxiety/Pages/Treatment.aspx

You could also point to all the side effects of SSRIs etc. Every drug has a list of side effects - that was a petty power play on the part of your doctor.

If your doctor still says no, say you want a second opinion, and ask for a referral.

Eventually, someone will relent - pregabalin has been an NHS approved medication for anxiety since 2006, but some doctors are still unaware of this (as your GP seemed to be), and just want to keep on prescribing the old familiar drugs.

heather89

11-01-15, 06:06

Go back to your doctor with exactly the same request (doctors hate that). Print out the NHS guidelines on the treatment of anxiety (which includes pregabalin) and show them to your doctor.

You could also point to all the side effects of SSRIs etc. Every drug has a list of side effects - that was a petty power play on the part of your doctor.

If your doctor still says no, say you want a second opinion, and ask for a referral.

Eventually, someone will relent - pregabalin has been an NHS approved medication for anxiety since 2006, but some doctors are still unaware of this (as your GP seemed to be), and just want to keep on prescribing the old familiar drugs.

Thank you. I actually felt like I was losing my mind in that appointment. No matter what I said he just did not agree. He said it wasn't licenced for GAD and I couldn't bring myself to tell him otherwise as he is the doctor who has been doing this for 20 years, and he is the nicest doctor at the practice which is why I always try to see him.

I have actually just sent an enquiry to a private surgery as I am getting to the point where I feel I could go back into a depression at the thought that I may have to suffer this for the rest of my life.

Should I go back to see the same doctor? I feel as though I'd be cheeky doing that. Do you think he just doesn't have experience with the drug for anxiety? Or it is a money issue? Or maybe a bit of both? I would bloody well pay for it if there was the option. I could do that through a private doctor but consultations with them cost a fortune too.

---------- Post added at 04:17 ---------- Previous post was at 04:15 ----------

Hi i also got refused pregabalin my my physc, she said it's not common practise to prescribe this for anxiety and also said about the side effects? I was gutted as have read so much good reviews on it for anxiety, im struggling majorly at the min with severe anxiety and panic and having to rely on Diazepam to help me through the day XX

Have you tried for a second opinion? It is ridiculous how badly mental health is treated in the UK. I can't even get any diazepam from my doctor. I understand benzos are not a long term solution and are addictive but I have read of people being on pregabalin for years and managing to come off them fine. God help us lol xxx

---------- Post added at 06:06 ---------- Previous post was at 04:17 ----------

I found an email address for my GP, should I be so bold as to send him an email with my "evidence"? I don't feel I could bring myself to get another appointment with him, I'd feel as though I am wasting time as it is a nightmare for GP's these days with their schedules. When I could easily send an email? Or is that too much? I've never heard of someone doing that before but I just want to fight my case. He did say he would do some research on it but didn't say about getting in touch with me if he found evidence in my benefit. I am from Scotland and we get our prescriptions for free but I don't know if there is a way to pay for them through the NHS? I am just desperate.

MyNameIsTerry

11-01-15, 07:23

If you want more proof of when it's used, you can find guidance to the NHS on the NICE website. Sadly, this only covers England & Wales as Scotland have their own version but I remember their guidelines being far being NICE in terms of mental health when I was checking on their for someone on here a while back but I wonder if NICE approval would help?

This medication costs more so GP's can be like this and your GP sounds like a right idiot trying to scare you off by citing side effects when they all come with them which they are less open about when they prescribe then easily when someone sees them wroth anxiety and depression. A very low thing to do.

hanshan

11-01-15, 08:47

Hello Heather,

I wouldn't bother sending emails to your doctor - they would probably get quickly flicked through and forgotten.

Is your doctor unaware that pregabalin is licensed for anxiety or put off by the cost? Maybe both. But persist.

If you have the money, you can offer to pay the full cost yourself. The cost isn't astronomical - I paid it in Australia because pregabalin wasn't licensed for anxiety, and it came to around five dollars per day at the maximum dose (I think that's about 2-3 UK pounds for 600 mg). I thought it was money well spent, particularly when lots of people were spending the equivalent on a morning cup of coffee and muffin.

MyNameIsTerry

11-01-15, 09:23

heather89

11-01-15, 17:40

Well if you list your county or town, I can post you the costs as the local trusts have documents detailing their costs but I would expect it would cost more given someone is likely to want a profit and the licenced costs are most likely not to individuals.

There are some local trust cost examples in my post on this thread:

I'm sure I posted a load in one thread but I can't seem to find it anymore.

Hanshan, I doubt a patient could do that with a NHS GP, maybe it will mean going private?

Thanks Terry. I am from Glasgow in Scotland. I sat for hours last night looking at many documents which shows pregabalin is prescribed for anxiety and so many people from the UK are on it for this reason. My friend is from the same place as me and he is prescribed it but the doctor just shoved that under the table. I can't believe the support on this site, I'm almost in tears at how helpful you are all being. You have no idea how much I appreciate it.

I have sent an enquiry to a private hospital to find out some more, I just have my heart set on this drug as I've compared it to so many other drugs and I just feel it could work for me. I actually read a document which argues that it is ridiculous that people are made to go on SSRI's instead of pregabalin for anxiety when pregabalin has been found to be so much more beneficial. I think this is why I am so annoyed with the system right now.

---------- Post added at 17:12 ---------- Previous post was at 17:08 ----------

Hello Heather,

I wouldn't bother sending emails to your doctor - they would probably get quickly flicked through and forgotten.

Is your doctor unaware that pregabalin is licensed for anxiety or put off by the cost? Maybe both. But persist.

If you have the money, you can offer to pay the full cost yourself. The cost isn't astronomical - I paid it in Australia because pregabalin wasn't licensed for anxiety, and it came to around five dollars per day at the maximum dose (I think that's about 2-3 UK pounds for 600 mg). I thought it was money well spent, particularly when lots of people were spending the equivalent on a morning cup of coffee and muffin.

Yes that was what he said anyway, that it wasn't licenced for anxiety, even though my friend is on the same drug. He then tried to give me the "I don't know how it would react with the trazodone", which again makes no sense as my friend is also on trazodone. But I did say I would be willing to come off the trazodone, but he said my depression may come back. At this rate it is going to come back anyway as it is ridiculous how much it restricts my life. I hadn't realised how much it does until I listen to other people and what they do on a day to day basis. I don't think we can pay for our scripts from the NHS, I think we need to do it privately here. But a consultation with a private doctor costs a fortune alone, but I have put in an enquiry to a private hospital anyway and see what happens. I would give up the money each month for this drug as I honestly couldn't put a price on how awful it feels some times. I am from Scotland so I have been finding it difficult to find info on this drug for my area.

---------- Post added at 17:40 ---------- Previous post was at 17:12 ----------

If you want more proof of when it's used, you can find guidance to the NHS on the NICE website. Sadly, this only covers England & Wales as Scotland have their own version but I remember their guidelines being far being NICE in terms of mental health when I was checking on their for someone on here a while back but I wonder if NICE approval would help?

This medication costs more so GP's can be like this and your GP sounds like a right idiot trying to scare you off by citing side effects when they all come with them which they are less open about when they prescribe then easily when someone sees them wroth anxiety and depression. A very low thing to do.

Yeah I checked the NICE website and thought about showing this to my doctor. The side effecgt thing baffled me as I had read a document a few days ago which compares pregabalin to SSRI's and it just shows it really is a money thing when it comes to prescribing this for anxiety. I had tried citalopram in the past and I lasted 2 days, my jaw had a mind of it's own, my pupils were HUGE, my head was bursting, my anxiety went a million times worse, I couldn't sleep, had restless leg syndrome, had to keep going to the toilet every 5 minutes, heart palpitations and so on. I spoke to a locum doctor on the second day who said come off it immediately. Then one of the other doctors said I could try fluoxetine. Then the locum doctor said no I should never try that as it is very similar to citalopram. Now I haven't experienced anyone with these types of side effects with pregabalin. I'm just at a loss on what to do.

SmilingAlbert

11-01-15, 20:19

heather89

11-01-15, 22:35

Sorry to hear all this.

Change your doctor practice, ASAP.

There are many in Glasgow, and you should have options.

The private route will be ruinously expensive. Initially prescribed by a private doc, I was quoted £200 per month for 150mg per day (and you may well need more).

I went to a NHS GP and, given my history of major recent problems, got a NHS script with no problems. You just need to say what I said: you have had dire experience of conventional SSRI and SNRIs, and, as per this link , Preg is the third in line.

Pregabalin is expensive, but nothing compared to some of the meds out there these days. I do believe Preg is coming off patent in the EU in the next year or two, which will change everything. But I doubt you can wait, so find yourself a new doctor. Ask your friends (on FB etc.?) if they have a good one they know of.

You have nothing to lose, and much to gain.

Good luck!

Albert

God, I can't believe it costs so much privately. Are you from Glasgow, or Scotland at all? I told my mum of these issues today and broke down about it, she said she wants to come to the doctor with me and bring the documents I have found which show it is licensed in the UK for anxiety. I suppose you are right, I have nothing to lose. I just feel a bit out of my depth going back to the doctor again. If that still leads to nothing I will switch practice. It's ridiculous how mental health is treated in the UK. Thanks for your advice :) I really hope I can get a script soon.

hanshan

12-01-15, 00:06

heather89

12-01-15, 00:35

An interesting article on the cost of pregabalin and effect on prescribing -

Any doctor can write a private prescription. They just don't use their NHS prescription forms, or cross out the NHS bit.

I found a price of around 80 GBP for 56 x 300 mg Lyrica, If you took one per day (single dose per day not recommended, but would save money), it would cost about 1.43 GBP per day. (The following is for information purposes only - not to be taken as a recommendation or endorsement).

Nevertheless, since pregabalin is NHS licensed for anxiety, your doctor would almost certainly be duty-bound to write out an NHS prescription.

Yeah I seen a similar article a few days ago. The NHS is ridiculously under funded and things like mental health aren't being dealt with properly. I spoke to my mum today and she urged me to email my doctor so I did. Just sent him all the documents I have found on here, many of them the ones you had posted on that other thread. I had found that thread a couple days ago and been looking through all the NHS articles. Shame that something that could help is so close yet so far away. Thanks for your info :)

MyNameIsTerry

12-01-15, 07:21

Albert - that's truly disgusting to charge £200 per month, the cost per month was around £64 to local trusts in 2012 and it can't have increased anywhere near that much. Sounds like an unscrupulous GP exploiting desperate people to me!

Hanshan - NHS Scotland is a separate entity so are your links for them or NHS England & Wales?

Heather - it sounds like a good idea to take your mum because he may find if harder to blag someone who is struggling with anxiety.

hanshan

12-01-15, 09:08

Hello Terry,

The link to treatments for GAD is NHS England. I don't know if Scotland approves separate treatments for GAD.

The link to the "Pulse" newspaper is nonspecific UK. You would need to read in any article in the Pulse to see if it was specifically locally relevant - the main point was that cost factors were driving whether pregabalin was prescribed or not in at least one location at one time.

The online pharmacy is located in the UK and presumably can fill prescriptions from anywhere in the UK.

In principle, doctors are able to write private prescriptions outside of subsidizing and licensing agencies like the NHS (and the patient bears the full cost). The fine detail varies from jurisdiction to jurisdiction. This principle holds true in Australia, even though we have different laws governing it for each of the six states and two territories.

SmilingAlbert

12-01-15, 11:24

Hi Heather,

No I'm in London

But I'm guessing NHS Scotland has similar guidance etc. to NHS E&W

I like the NHS in many ways, but I deeply dislike the way it abuses its monopoly and resolutely refuses to treat taxpayers as customers. You are ill, and have paid into this system, and have the right to be treated properly.

Good luck with it

Albert

Avasmummy_x

12-01-15, 18:22

heather89

12-01-15, 19:17

I think the only reason they don't orescribe is cost. Which is so wrong if you've tried almost everything which it sounds like you have why not try it?

I was Lucky I had tried most anti ds and most I had to stop within days of starting as got severe side effects and like you ive had cbt ect.

She said try these and I'd never heard of them till I posted on here. They seem to work really well for most people on here. They are helping me slightly but not enough.

I know, I just don't get it. I've paid NI and tax in this country and now that I want to use what this money goes toward, I cannot get it. BLAH!

Yeah I've been told never to go on SSRI's again and I am too terrified to try SNRI's as they are similar in the side effects. I guess I just need to keep trying to fight my case, at the end of the day I have nothing to lose.

How long have you been on pregabalin and what dose? I hope it continues to improve for you :)

---------- Post added at 19:17 ---------- Previous post was at 19:14 ----------

Hi Heather,

No I'm in London

But I'm guessing NHS Scotland has similar guidance etc. to NHS E&W

I like the NHS in many ways, but I deeply dislike the way it abuses its monopoly and resolutely refuses to treat taxpayers as customers. You are ill, and have paid into this system, and have the right to be treated properly.

Good luck with it

Albert

Yes I agree, I feel so lucky we have the NHS when you compare to the likes of America but it definitely has its flaws.

My mum works for the NHS and I was asking her about NICE. As NICE say that pregabalin can be used to treat anxiety, but these guidelines are for England and Wales. She said that they strictly follow these guidelines in Scotland too so she is adamant the doctor doesn't want to prescribe it due to cost.

SmilingAlbert

12-01-15, 21:44

Been googling around on this.

It seems it was never approved in Scotland for GAD (unlike in E&W), which may be the issue. That said, it seems it has been prescribed for this reason, leading to concerns re cost and even abuse: http://www.bmj.com/content/347/bmj.f6747/rr/672294

I'm no expert, but I guess Glasgow like all large cities has drug problems, including the abuse of prescr drugs like this. It could be this is weighing on his mind a bit, but that is of course only a guess.

Gabapentin is a cheaper and less sophisticated version of Preg. If you really can't get preg, it might be worth trying to get this instead.

I feel very sorry for you; I always think how luck you Scots are having free prescriptions etc., but clearly there is rough with the smooth.

My quote for £200 was from a private hospital, which was clearly over the top.

It seems you can get it online (with a private prescription) for £85 per month for 150mg. This is less than £200, but will really add up. If it works, you will need to be on it for at least 6 months, possibly a lot longer.

I still think you need to find a new NHS doctor.

Albert

Avasmummy_x

12-01-15, 23:44

I'm currently on 400mg a day broken in to three doses.

Ive been on it since November so it should be working a lot more than it is really.

Most on here got instant relief and it's just been perfect for them.
It's very up and down for me I'm having good days with mild anxiety then days that can only be described as the worst days in my life. I think I may need a dose increase.

Dazza123

13-01-15, 00:03

I have been told to stop it for a week. My eyesight has been getting more blurry as the days pass, and my stomach bloated out and wouldn't go back down. Been in a foul mood all day today which I suspect is my body missing it, however my vision is improving and the bloating has eased. I have to say that although my mood has been terrible, I actually feel normal today, and like I have feelings, which I havent felt for a while so not sure if I might just get some CBT books and try things that way for a while.

Avasmummy_x

13-01-15, 01:17

Cold Turkey? I didn't know you could on this med do you get withdrawals?
I was thinking about stopping it tbh.
Right now it's 1am and I'm up with racing thoughts to the point I think I might be mad. Although that is my anxiety im afraid of going mad.
I have never had it bad like this before.
I understand what you mean about feelings. Sometimes I feel numb and drugged on this med.

MyNameIsTerry

13-01-15, 07:37

Thanks for the clarification Hanshan.

A quick search turned this up http://www.scottishmedicines.org.uk/SMC_Advice/Advice/765_12_pregabalin_oral_solution_Lyrica/pregablin_oral_solution_Lyrica which shows on 2012 that no submission was made for GAD to be part of it's licenced use in Scotland.

I'm not sure if this had changed but it would be pretty easy for the OP's GP to use this against then if it has been updated.

The odd thing is that there is some more recent evidence out there which shows otherwise, such as https://www.google.co.uk/url?sa=t&source=web&rct=j&ei=Fcm0VPjIKoeraff-gcgG&url=http://www.communitypharmacy.scot.nhs.uk/documents/nhs_boards/fife/Fife%2520Prescribing%2520Update/Fife_Prescribing_Update_47.pdf&ved=0CDAQFjAH&usg=AFQjCNEE7_Z7tf6a29gola108wbkZbAC6Q

hanshan

13-01-15, 08:24

Hello Terry,

Thanks for that - I didn't know that there was any difference in the NHS according to different regions of the UK.

Trying to to switch people to gabapentin and characterizing pregabalin as a third-line drug that can only be initiated by a specialist both sound like cost-cutting to me, not good medicine.

Anyway, I think the patent on pregabalin expires in 2018, at which time cheaper generics can compete. If this brings the price down, the very same doctors who were arguing against pregabalin may suddenly turn around and start recommending it to their patients.

SarahH

13-01-15, 08:29

Sorry it did not work for you Dazza. Go careful if you has stopped cold turkey.

Sarah

MyNameIsTerry

13-01-15, 09:24

I agree Hanshan.

I remember my GP saying he couldn't prescribe medications beyond SSRI/SNRI forms so would require a psychologist which is really worthless since you have to be referred with a 12 month waiting list in my area! I find third ludicrous when in the case of a physical issues you can be referred for a medication review and handed straight back.

It seems to come down much to the GP's willingness to help.

Its a strange system because aside from the division country level, it then becomes regional in the corn of local trusts and its not uncommon to find close regions with different policies so it can be a bit of a postcode lottery for some conditions. There have been media cases in the past about the NHS saying its available but the local trust deny it. I think the trusts are very geared towards cost as I used to know a health campaigner years ago who was fighting for the rights of pensioners and he's was always bashing the local trust in the media.

hanshan

13-01-15, 10:10

Australia is a bit different in that we have the Pharmaceutical Benefits Scheme (PBS) which covers the entire country without variation.

If a medication is PBS-listed for a certain condition, you pay a certain amount for a month's prescription, regardless of how expensive it is. I think it is about $5.00 (similar to US$ but going down) for a pensioner/low income earner, but around $35.00 per month for an income earner. Obviously, you don't pay that for cheaper medications. The doctor is free to prescribe what they want within the guidelines - it doesn't cost their practice anything.

There are systems and systems - the important thing is to get the right treatment for you.

MyNameIsTerry

13-01-15, 10:24

I'm already booking my flight! :shades::D

hanshan

14-01-15, 02:10

Not so fast! I don't think pregabalin is PBS-approved for GAD (again, probably cost-cutting), so people with GAD have to pay the full cost if they want it (it is approved for neuropathic pain).

Tish

14-01-15, 09:52

I asked my GP for pregabalin because I read it was good for both nerve pain and GAD. He wouldn't prescribe it but suggested Amitriptyline instead. He said they always try that one first and pregab is fourth on the list. He denied it was because of cost but rather because it's highly addictive.

hanshan

14-01-15, 12:33

Well, it's highly addictive ... and look at all the awful side effects ... expensive ... no, who told you that?

SarahH

14-01-15, 14:14

Tish,

I suggest you see a different GP in your practice and show them the NICE guidelines regarding Pregabalin. Your GP is trying to palm you off with a cheaper, old fashioned drug.
In my opinion Pregabalin has side effects which are not as horrendous as SSRIs and pass with time. It is not as addictive as Valium and is the best thing I have been given for anxiety.
I am not saying that Amitriptaline is not effective for anxiety and nerve pain, it also acts as an anti-depressant. But Pregabalin is the better more modern option.

Sarah

Avasmummy_x

14-01-15, 18:23

I didn't know pregabablin was highly addictive? I wouldn't have started it if I knew that!

hanshan

15-01-15, 00:26

Hi Avasmummy,

You may have missed my point. Pregabalin is not highly addictive and its side effects are much milder and fewer than ADs for most people. But these are lies told by doctors to cover up the fact that they are not prescribing it due to cost.

MyNameIsTerry

15-01-15, 01:35

Compared to the cost of the standard SSRI's most likely Hanshan. Oddly though I checked the costs when another member, gregcool, was having issues with his new GP and his trazadone (which was also a lying GP as it's cheap in pill form in the UK) and I found that a common SNRI which I am on, Duloxetine, is quite expensive.

They tout this addiction line around but if you look into that if guidance against it's use in patients with know substance misuse issues, if I remember correctly.

hanshan

15-01-15, 03:21

There is no evidence that pregabalin is addictive when taken at prescribed levels.

There is some evidence that people with substance abuse issues are taking megadoses (several times the maximum prescribed dose) and may well develop withdrawal symptoms. This should not be confused with normal practice above.

heather89

17-02-15, 15:43

OK so I have booked an appointment with a different GP at the same practice for Friday afternoon. I have printed off the page on pregabalin from the BNF, links fro the NHS and NICE. I haven't let myself get hopeful this time. But it is worth a try. Wish me luck.

netball

19-02-15, 08:19

good luck heather :hugs:
let us know how u get on. X

heather89

15-04-15, 10:53

Hi guys thought I would give you an update. I went to a different doctor nearly 2 months ago and she said the same thing the previous doctor had said but she said she would do more research as she wanted to give me it. She said she would call me the following week but after a few weeks of no call I was getting to the end of my tether. I ended up in bed for 3 days crying when I went back to the doctor to see a locum doctor. She was really nice and sat with me for 40 minutes listening to my history. My mum was with me and she went mental about how the other doctor hadn't called me. The locum asked if I would try another SSRI so I agreed to try sertraline. For the first couple weeks on sertraline I was OK but nearer the end of the month the dry mouth had gotten so bad that my mouth and tongue came out in sores and I couldn't eat or sleep. So the doctor told me to come off them. She said I should speak to the other doctor about the pregabalin although she wanted me to try more antidepressants first. The thought of this terrified me so instead of seeing her again I requested a call from the other doctor, who is a partner at the surgery and the only one allowed to prescribe medicine for non-licenced issues. I couldn't get an appointment with her til next Friday but she called me today and she has said I CAN GET PREGABALIN tomorrow :D I'm sooooo happy! I have hope once again!!! I must say perseverance has definitely paid of for me this time :) thankyou everyone who has been supportive of me over the last few months of frustrating times for me. I really hope this works for me x

hanshan

15-04-15, 11:51

heather89

15-04-15, 13:28

Hello Heather,

This is an amazing story. Three doctors and you can't get one willing to prescribe a medication approved by NHS for anxiety eight years ago? Where are these people? On the moon?

If a new medication for anxiety is NHS approved this year, will it mean that these GPs in 2023 will still claim that they haven't heard of it and can't prescribe it? Beats me.

I know it really is. Turn out that the NHS in Greater Glasgow and Clyde (where I live) do not have it licensed for anxiety but it is licensed everywhere else. The doctor said that this is due to the fact that this constituency did not seek to acquire a licence from wherever it is you get a licence, she does not know why, and this is why GPs are reluctant to prescribe it. She did say, however, that it does not mean they are not allowed to prescribe it for non-licensed issues if the GP feels that other avenues have not been fruitful and the benefits outweigh the risks. So I am glad I persevered. I do feel though that the first GP was unwilling to prescribe due to cost. And I am thankful I persevered and finally got a GP who done some research and will now prescribe me it. I get the prescription tomorrow. How much of an idiot will I look if it doesn't work though lol. Although I know it will as my boyfriend is on pregabalin and has given me some when I have been in a total panic and it has helped a lot. I just didn't want to say to the GP I had received meds that weren't prescribed for me.

Sober2000june

15-04-15, 20:04

Good luck heather, i was in Glasgow now in East ren. I know how you feel, your experience of the nhs just comes down to which doctor you access it with.

Take care,
Paul

SmilingAlbert

15-04-15, 21:29

Great news!

As per earlier thread, NHS Scotland is a different org from NHS England and it appears has different rules, including over Preg, plus they seem more fearful of abuse potential, it would appear.

We'd all be pleased to hear how you get on with it I'm sure

So fingers crossed!

Albert

hanshan

16-04-15, 04:55

Hello Heather,

I was forgetting that the NHS is broken up according to region with different rules. Australia is similar in some ways with each of the states making its own laws relating to different aspects of medical practice. However, rules for medications and prescribing are uniform nationally, which I think overall is a good thing. (It's also a principle of medical practice that doctors seem to have hung on to everywhere, that they are free to prescribe any medication apart from heavily controlled drugs - but they assume much greater responsibility if they go outside set guidelines.)

Anyway, best of luck with the prescription.

MyNameIsTerry

16-04-15, 05:32

Its all very confusing because we have NHS England, NHS Scotland and we also have the MHRA who are responsible for licencing on behalf of the Department of Health. Its like MHRA can licence something (their remit is the UK) but then it comes down to the NHS bodies from there. Then we have local trusts and now we even have Care Quality Commissioners (CGC) so even if NHS England licence it, the trust can still choose not to use it as can the CQC and we end up with issues where just over the border you have patients accessing treatment that we can't.

Its a mad system really! I think they need to wake up to the fact that "National" hasn't been valid for a very long time in the UK.

hanshan

16-04-15, 10:56

Hello Terry,

On the basis of what you say, I have to agree. It reminds me of feudal fiefdoms. Geographically, the whole of Europe fits inside Australia (just under half the area). Britain is a smallish bit of that, and yet is divided into different laws and rules down to your local health authority? For me, it's hard to understand. Also, it encourages people to switch doctors to a different locality where a medication is licensed - is that possible?

heather89

16-04-15, 16:01

Thanks for all your replies guys. It makes me feel less like I was going insane wondering why I couldn't get pregabalin! I'm just back from the doctors. She explained that pregabalin is not licenced for anxiety in Scotland AT ALL. And the reason for this is because NHS Scotland has not asked for the go ahead by the manufacturer to use it for anxiety. The doctor agreed this was strange and confusing. I mentioned the price and she doesn't know why it costs so much but confirmed it is another reason why the NHS are reluctant to prescribe it. She did not seem phased by this though. She told me the starting dose is 150mg per day. She was going to give me 75mg x2 per day for the first week but then decided to do it 50mg 3x per day. She told me the price of each option, the 75mg x2 for one week was over £20. Then when she changed it to 50mg x3 per day it went up by a further £15 for the week. Crazy. But she said she would rather do it slower with me because I have had such strange side effects from drugs in the past. Which is understandable. She mentioned to me again about the abuse potential and also had to explain to me how, due to the fact it is not licenced for anxiety here, I need to be aware that I cannot shed any blame on the practice for prescribing me it. Which, again, is understandable and I completely accept this.

It is mental how the UK is such a small country yet this "national" health service is divided up. Beggars belief.

Logan_Five

16-04-15, 18:42

NHS under the Tories. :( :( :(

God help us if they get in again.

Sober2000june

16-04-15, 19:01

Good to hear you're getting the pregabalin heather.:)
I'm not brave as you, I started two weeks ago on 2x 25mg. Beginning to wonder if I'm just prolonging it. im on 100 per day at moment. 50morning , 25 aft and 25 eve.
I wish you well:hugs:
Paul

SmilingAlbert

16-04-15, 21:24

MyNameIsTerry

16-04-15, 22:28

It was like that under Labour too. CQC's are the new bodies but the local trusts have been around a long time causing issues.

Hi Hanshan,

That's a good comparison to the old fiefdoms. I think I've heard of people changing to surgeries that fall under another Trust. We occasionally see news stories about how one Trust doesn't provide the same medications as another. I saw a report about a poor guy who sadly took his life due to waiting times and lived a matter of a few miles from me and came under a different Trust. If he was within my trusts area be would have been seen much sooner.

---------- Post added at 22:28 ---------- Previous post was at 22:21 ----------

Thanks for all your replies guys. It makes me feel less like I was going insane wondering why I couldn't get pregabalin! I'm just back from the doctors. She explained that pregabalin is not licenced for anxiety in Scotland AT ALL. And the reason for this is because NHS Scotland has not asked for the go ahead by the manufacturer to use it for anxiety. The doctor agreed this was strange and confusing. I mentioned the price and she doesn't know why it costs so much but confirmed it is another reason why the NHS are reluctant to prescribe it. She did not seem phased by this though. She told me the starting dose is 150mg per day. She was going to give me 75mg x2 per day for the first week but then decided to do it 50mg 3x per day. She told me the price of each option, the 75mg x2 for one week was over £20. Then when she changed it to 50mg x3 per day it went up by a further £15 for the week. Crazy. But she said she would rather do it slower with me because I have had such strange side effects from drugs in the past. Which is understandable. She mentioned to me again about the abuse potential and also had to explain to me how, due to the fact it is not licenced for anxiety here, I need to be aware that I cannot shed any blame on the practice for prescribing me it. Which, again, is understandable and I completely accept this.

It is mental how the UK is such a small country yet this "national" health service is divided up. Beggars belief.

Hi Heather,

I'm glad you are getting somewhere and its great to see your GP put your needs before their costs.

Something I want to pick up on though is your GP stating that off label prescription means they waive responsibility. This is completely untrue, they have chosen to take this course of action so are responsible for their decisions. They can't pass blame to the patient.

Licensing is sought by the manufacturer to the licensing body, not from the health service unless they wish to prescribe it when it is not available. Its strange that NHS England have it but Scotland do not but there are some online documents explaining that last time I looked but I can't remember the decision.

hanshan

17-04-15, 03:05

MyNameIsTerry

17-04-15, 05:09

I can't comment directly on the laws and regulations regarding prescriptions in Scotland, but the general principle is that in off-label prescribing, the doctor doing the prescribing carries more responsibility, not less.

The reason for this is that if something goes wrong, they have to justify their actions, whereas if they stick to the guidelines, they are not so personally responsible.

Our government would agree with you, hanshan.

https://www.gov.uk/drug-safety-update/off-label-or-unlicensed-use-of-medicines-prescribers-responsibilities

One important statement is "take responsibility for prescribing the medicine and for overseeing the patient’s care, including monitoring and follow-up"

The General Medical Council (GMC) say the same http://www.gmc-uk.org/static/documents/content/Good_Practice_in_Prescribing_Medicines_0911.pdf in 20 (c).

The GMC cover Scotland.

There is a NHS Scotland document here with the same text in 4.11 (c) http://www.nes.scot.nhs.uk/media/1457463/nesd0061_goodprescribingpractice.pdf

So, I think whilst this GP seems good for prioritising the needs of the patient over costs, they have told some porkies about their responsibility to distance themselves from anything going wrong which is unethical.

Logan_Five

17-04-15, 12:15

>>NHS under the Tories. :( :( :(
>>God help us if they get in again.

NHS in Scotland run by the SNP. On this matter, English get the drugs that can help them, Scots do not. Pregabalin has been helping anxiety sufferers for many years in England.

I was turned down the other week when I asked a GP for it - though perhaps reasonably, she suggested that the Citalopram needed longer to kick in. I'm due back a week on Monday, so we will see how I'm doing then.

SmilingAlbert

17-04-15, 14:12

Sober2000june

17-04-15, 15:01

You're exactly right about not being warned from gps that your anxiety may well become supercharged with the addition of ssri. I think doc's should be give 3 days of this stuff to give them a bit of empathy;)

SmilingAlbert

17-04-15, 17:34

>>You're exactly right about not being warned from gps that your anxiety may well become supercharged with the addition of ssri. I think doc's should be give 3 days of this stuff to give them a bit of empathy:wink:

Yes, and the on the endless leaflets with the drug, none ever say "you may feel very odd indeed for a bit after starting these - don't worry, this feeling soon passes."

Instead, vague bullsh*t nonsense with a never-ending list of possible side-effects. They should also supply links to reputable support websites like this where you can compare notes with other users; as we know, knowing that "you're not alone" can be a great comfort.

And yes, GPs need to know far more about the drugs they hand out than they mostly seem to, in this area.

Albert

MyNameIsTerry

18-04-15, 05:33

There is good news on the UK cost front:

the patent for pregabalin expired in July 2014, this patent expiry related to the use of pregabalin in epilepsy and generalised anxiety disorder;

http://psnc.org.uk/sunderland-lpc/our-news/pregabalin-lyrica-licensing-differences-bewteen-lyrica-and-generic/

So in theory as this becomes more widely known, it will become more freely available, and I dare say might even by considered first line treatment instead of 3rd or so as at present.

I hope so, because I know from first experience that the start-up side effects of SSRIs are horrendous, and make people who already feel awful feel even more so. (and this usually happens with absolutely no warning from the doctor prescribing). Pregabalin is much better tolerated.

Albert

I completely agree with you, Albert. Citalopram hit me bad but my current SNRI, Duloxetine, sent my anxiety to far beyond that of the last 8 years and 2 breakdowns!

There is a problem with the patent that could cause generics to be underused. Pfizer have patent for Pregabalin for other conditions until 2017 so how would a pharmacist know which one to dispense when it doesn't say what the condition is on the prescription? This is going to be a problem and the only way forward there to allow the costs to come down is to write it on or the pharmacists asking when the prescriptions are handed over.

So, its going to need a manual workaround by the sounds of it.

hanshan

18-04-15, 10:35

Hello Albert,

Thanks so much for finding that news about pregabalin and the patent, even if I am not in the UK (outside of Scotland!)

In my experience in Australia, pharmacists are likely to be aware of all the ins and outs, since their business revolves around correctly providing prescribed drugs. When they go into the dispensary area, there is usually a computer terminal where they can check all the current rules, warnings, etc.

I suspect that it's probably going to be the doctors who are unaware of exactly which conditions they can prescribe generics for.

Of course, there has to be a generic pregabalin on the market - the generic folks may just wait a few more years until all patents expire.

Does anyone remember the days when doctors hand-wrote prescriptions in a virtually indecipherable scrawl? Pharmacists earned their money back then. Thankfully (for the pharmacists, anyway), there were far fewer medications on the market in those days.

MyNameIsTerry

18-04-15, 10:47

Yeah, I remember that. The days before they started printing their prescriptions. It wasn't too many years back. I can remember having a number system where you were given a bit of ripped off cardboard with a number on that you gave the doctor!

I wonder how they will get around this issue with generics though because thinking about my prescription, its printed and it doesn't mention my condition (s), it only mentions the the medication, dosage and quantity. So, how are pharmacists meant to know that it is for GAD? Without the GP adding something to it, I can't see how they will. So, will GP's have that function as its all software and field values thesedays? If thats going to mean updating their software, that could be an issue if its more than the fields can accept. Maybe they will write GENERIC next to it? But unless the NHS filter that down, I doubt it would happen.

Does this happen much with patents? If it does, I guess they must already have a way of doing this.

SmilingAlbert

18-04-15, 11:11

One hope they will work out a system.

Preg is very expensive - this PDF suggests NHS England alone spent around £260m on it in 2013:

http://www.hscic.gov.uk/catalogue/PUB13887/pres-cost-anal-eng-2013-rep.pdf

So the NHS will want to cut this asap what with all its pressures. But i don't know how they will do it, and I'm not sure any of us want our illness printed on our prescriptions (however obvious it is from the medicines(s) printed on it.

Still, this is broadly good news, as to say again, I don't think most SSRIs are good for most Depress/anxiety sufferers:

"You're going through a crisis - take this and your crisis may well become worse for 3-4 weeks as these drugs kick in", and no, we wont give you anything to calm you down (e.g benzos) in the meantime.

Thanks very much - 3/4 weeks can seem like a lifetime in such a situation, and when combined with "sure, you can see a psychiatrist/therapist - in around 3-6 months", makes this into a nightmare.

Albert

MyNameIsTerry

18-04-15, 11:25

Yeah, I can see something in March 2013 showing it as having an average prescription cost of £53.42 which is far over a lot of them. Mine, Duloxetine, is in the £30 range and thats expensive compared to most SSRI's that they would normally use. I know mine can come as generic so maybe the cost will become closer to this?

Given its a drug with a sharp rise in prescribing (a report in Gloucestershire in March 2013 shows it as the highest cost growth drug) I'm sure the NHS will be looking for someone to fill the gap.

Cumbria in 2011-2012 shows it as approx £70, so it looks like it has been coming down, most likely due to rising demand which would make sense.

Here is the BNF list of costs:

http://www.evidence.nhs.uk/formulary/bnf/current/4-central-nervous-system/48-antiepileptic-drugs/481-control-of-the-epilepsies/gabapentin-and-pregabalin/pregabalin/lyrica

Which leads me to my next question...are you taking strawberry flavour?!

Sober2000june

21-04-15, 10:48

Hi Heather,

how are you doing on your dose of pregabalin?

Paul:hugs:

heather89

24-04-15, 04:01

Hi Heather,

how are you doing on your dose of pregabalin?

Paul:hugs:

Hi Paul :)

I'm doing well so far on the pregabalin. Noticing a slight improvement already. Holding my head a little bit higher when out in public instead of always pretending to be doing something on my phone in order to avoid direct eye contact with strangers lol. No side effects at all apart from good ones. I see my doctor again tomorrow so hopefully will get a dose increase as I seem to be handling it very well. How are u getting on? :) hope all is well and thanks for seeing how I am doing :) onwards and upwards!

hanshan

24-04-15, 08:10

Sober2000june

24-04-15, 10:12

Hi heather,
That's great you're doing well. I'm still trying to find my feet, hopfully when i get upthe dose a bit ill get there.
Good luck:hugs:

heather89

25-04-15, 10:33

Hi Heather,

I hope all continues to go well for you with pregabalin. Unfortunately like all these medications it doesn't work for everyone or has intolerable side effects, but when it does work it can be a life-changer.

Thanks Hashan! It has been going well so far. Already feeling a bit braver and more calm. Was at the doctors yesterday and she has put me on 7mg twice a day for a week then 7mg twice and 50mg once per day. She says she wants to take it slow with me which I am happy with but mentioned I will eventually be on 150mg twice per day. Feeling hopeful so far.

---------- Post added at 10:33 ---------- Previous post was at 10:32 ----------

Hi heather,
That's great you're doing well. I'm still trying to find my feet, hopfully when i get upthe dose a bit ill get there.
Good luck:hugs:

Thanks Paul :) what dose are u on at the moment? Good luck with ur pregabalin journey. It seems to be working well for me so far.

Sober2000june

25-04-15, 15:30

Hi Heather I'm currently on 125mg per day at mo. 50 am 25 aft and 50 before bed. Im still unsure if its going to help me. Maybe try and get a call to my shrink on monday as im 3 .5 weeks in and still struggling.

Maybe when i go up itll get better.

have a good weekend

SarahH

25-04-15, 20:40

Hi Paul,

I really think your dose is far too low to make a judgement on this med. You need to be on at least 300mgs a day to get it working.Please spark to your GP about an increase.

Sarah

Sober2000june

26-04-15, 14:04

thanks Sarah I'll see if i can get a hold of her early this week.

thnaks:hugs:

---------- Post added at 14:04 ---------- Previous post was at 14:03 ----------

on a positive i can get to sleep no probs and ibs has abated:D

rocksie67

09-12-15, 04:49

I am really at my wits end.I live in Glasgow and I have suffered bouts of anxiety off and on for years .I have a rubbish year my mum died and I discovered two days after her death that my mum had a child a daughter before her marriage to my dad .My sister was wanting to come to the funeral and wanting to meet with her brothers .This was relayed to me by mum best friend .I agreed to meet with her but I have been ostracised by my dad and two brothers since.

So have sruggled with this for about six months .Then about july the bloating started the chest pains the feelings of terror ,I think we all know the story .I have ended up in casualty for an ECG on at least 4 or occasdions the latest one tonight.
I have been prescribed serlatine and now for the last three weeks ciitrabalim .Cip has driven me daft I have sat in the house for the last three weeks nearly everynight having major panic attacks .I hae been told by GP surgery on Friday by a locum GP to preserve with cip I have but its making things worse.
About 4 years ago I had another rought patch ,and my old GP prescribed me pregabalim and it was an absolute godsend ,my panic attacks stopped overnight .I only needed it for 4 months .My old GP is retired and he was the type to tell the health board to go and do one .
I have asked twice for pregabalim very politely well not really asked just said it really helped the last time to two GPs both have given the answer it is not liscened for anxiety .My local area does have a high incidence of opiate addiction too .I have another appointment on Friday .I just can go on with this I have been hiding from friends cancelling arrangements just cause I am terrified.I did go out today for a coffee and a sandwich with a friend I lasted 40 mins then I felt the terror the stomach going then the pain in the chest .I got out made good excuses before I made a fool of myself
Sorry for the spelling mistakes and missed words I just struggling really badly .
Oh just a point Scotland is not a region it as a country within the UK

SmilingAlbert

09-12-15, 10:18

Sorry to hear all this Rocksie.

Talk to close local friends and see if they can recommend a good local sympathetic GP that you can transfer to. Then go and see them asap; arm yourself with some of the information on this thread maybe as a printout, and remind him/her of how Preg has helped you in the past.

This sort of thing really annoys me, and also reminds me why I hate black marketeers who abuse Preg for stupid reasons, making it that much harder for legitimate users to get hold of it. As you know, Preg is licensed for anxiety in England and is now widely done so; there is also a generic available which has reduced prices somewhat.

Good luck

Albert

rocksie67

11-12-15, 17:31

Went to my GP today still refused to prescribe me pregabalim he said it you can become dependent on it .Precribed me Mitrazepine and proponal .So I suppose I have got to try them .
Really a bit annoyed because pregabalim worked for me before

SmilingAlbert

12-12-15, 01:08

>>Went to my GP today still refused to prescribe me pregabalim he said it you can become dependent on it <<

Grrrrr; this really annoys me.

Medicines exist because they manage and sometimes cure conditions, and very clever people have spent years and billions of pounds developing them; if people have to take them for a long time, they are doing their job, even if they don't cure them.

Countless people walk this earth having productive and relatively normal lives because of them; I know, because I'm one of them.

Millions of people in the UK have been taking more or less the same MH drugs for years, sometimes decades. This is not ideal, but is almost always better than the alternative. They exist, use them.

As I say, find a new GP asap. If you can afford it, find a good private psychiatrist and talk this over with them. Explain your situation and how you have been helped by Pregabalin before, and get a private prescription. Then give this to (ideally new) GP, and get a confident friend to accompany you on the appointment.

I don't advise this to patronise you, but I know how people can feel in these situations, and how "the doctor knows best" thing can get them to dismiss you; my experience of doctors, as is frequently discussed here, is that they don't know nearly as much about MH issues as they should. If they still don't help, tell them you will raise this with your MP, and be prepared to do this too.

This sounds dramatic, but sometimes you have to take things into your own hands. As I have said before in these parts, I appreciate the NHS. But I strongly dislike the fact that it so often forgets that it is the provider of a service, and you are the consumer, which you have paid for.

Good luck,

Albert

rocksie67

12-12-15, 02:37

Thanks Albert
Im just feeling a bit low and I know I am far too meek an unassertive with my GP I suppose thats to do with how Im feeling .When Im well I am no pushover.
I know some of the mental health support groups in Glasgow ,they have a drop in centre I will contact them on Monday .
I know my local MSP .in Scotland the NHS is run by the Scottish Parliament .In fact my MSP is the First Minister :).She knows me well because when Im well Im involved with a lot of community work in my home area. .Its makes me quite sad thinking about it because I really do miss getting out and about .These panic attacks are really ruining my life at the moment .Im just so scared to go out and get caught in situations where I cant cope and I make a fool of myself

MyNameIsTerry

13-12-15, 05:49

You might want to ask your GP why in England & Wales we have NICE guidance that states to consider Pregabalin as a stage 3 med when others have failed. Plus there is online evidence of over 200+ CCG's who have been prescribing it.

NICE guidance is sent to the Scottish version for consideration and they map to NICE where they wish too.

As hanshan has said many times, there is no clinical evidence in the world stating that Pregablin creates tolerance. If it does, why does our NHS activelly prescribe it for GAD, a chronic (long term) condition and have the British National Formulary (BNF) produced licencing guidelines to allow it to be prescribed to treat GAD and whhat it was originally licenced for, epilepsy.

If you want to poke another hole in your GP's excuse, search your local formulary and NHS trust + pregabalin and you will dig up information that could show they use it. Just digging up information that proves they use it for epilepsy will achieve this anyway as I'm sure NHS Scotland aren't creating a whole bunch of addicts when their are other meds available with a similiar method of action e.g. gabapentin.

It's just about cash. Preg is approx £60 per month, common SSRI's like Citalopram/Sertraline cost less per month than the prescription charges the NHS levy for them (in countries where we still pay :mad:). Cash is king as they say and the NHS are will known for turning required treatments down due to the cost.

hanshan

13-12-15, 11:48

Hi Rocksie,

Getting a politician on your side can be very helpful. Of course, they won't interfere in medical matters, but they will vouch for you as a responsible person who feels all options have not been explored.

As for pregabalin being addictive, there is no evidence that it is addictive when taken according to prescribed guidelines.

There is evidence of abuse where some people are taking doses several times the maximum prescribed limit (eg 2,000 mg or more per day), but they are generally people with a prior history of drug abuse, not your average person prescribed pregabalin.

MyNameIsTerry

13-12-15, 11:58

And to add to hanshan's explanation, I know from reading the guidelines we have that it specifically states it should not be considered in people with a history of substance misuse. So, your GP cannot use the area you live in to make a judgement, it is purely individual.

Of course, the politicians in the NHS who want to save bucks may use that excuse as smokescreen but lets face it, GP's are dishing courses of Benzo's out daily and those are well accepted as tolerence forming as well as a known drug that is trafficked hence the UN even has it stated in their agreement for all US countries to control it's movement. Preg isn't on that list.

shiznit76

09-01-16, 16:09

how is the OP getting on with these? Would love to hear

nickw

03-07-16, 00:29

It's one of those ones that will vary from Doctor to Doctor.

Chiefly because it has some relaxing therapeutic effects that can make it desirable recreationally and groups such as heroin addicts will seek it out so there is potential for black market resale.

Despite the fact that these therapeutic effects are part of what makes it an effective treatment, some Drs simply do not feel comfortable with using anything that has a cold purely medical purpose. Some however are more laid back - my ex for example mentioned anxiety and got Diazepam straight away - something even I thought was a bit irresponsible.

It's not know exactly how Pregablin works and there are more common alternatives.

So they will be looking to see if you've asked for it as you think you may enjoy it. They will also be looking at your personality - someone who is a little unstable, prone to mood swings and depression also runs a higher risk of abuse and addiction.

It is frustrating that there are so many barriers to potentially effective legitimate medicine, when hard rugs are easy enough to get on the black market if you were not going by the book. If something makes you feel good on top of treatment then bonus!

karenp

24-07-16, 09:35

I just cannot get Pregablin either...always told, it is not for anxiety.......they really mean it is expensive,lol. I can't do Mirtazapine, makes me suicidal, I have tired everything and only Citalopram works but it takes about 4 months to make me better and without sleeping pills or benzos is like hell!

MyNameIsTerry

24-07-16, 09:44

Nella131

02-08-16, 19:00

Frustrating to read here about others having difficulties in getting this medication through GP's - for me it has been the first thing that has helped my GAD after so many years of struggling to cope. Recently had it prescribed by a psychiatrist, and so far it has helped a significant amount.

But I have also experienced a problem in getting a repeat prescription from my GP, despite having with me a letter from my psychiatrist, and my medical records clearly showing that I'd been on all the usual SSRI/SNRI and tricyclic options, with zero effect (other than many difficult side effects!) over recent years.

The GP was extremely antagonistic and misinformed about the medication generally, and tried to tell me things which seemed to be her misinterpretations of some of the recent studies relating to its potential for misuse/dependence in forensic populations and in those who have previously had substance misuse issues. I don't think she was expecting a patient to have read all of the systematic reviews! - and in the end she resorted to some rather unprofessional statements such as 'well, I wouldn't want my son or daughter to take it' - which is not the point.

The current NHS England guidance for prescribers is that patients should not be refused access to a potentially helpful medication on the grounds of potential for dependence - unless there are particular circumstances suggesting otherwise - and that the patient should be allowed to make an 'informed choice' about it - which I felt she was taking away from me.

To cut a long story short, I decided to switch GP practice, since I hadn't been particularly impressed with any of the doctors I'd seen from a MH point of view - in the same catchment area - and had no trouble at all. The only question that was asked was 'is it helping?' (yes) - and he said he would just liase with my consultant if needed.

The first GP, interestingly, said it wasn't a question of cost - which was what I'd been afraid of being told! - but that she just thought it was too 'dangerous' a drug to prescribe..though how she would know, as she said proudly she had never prescribed it for a patient in all her time in practice...I am not sure.

I am trusting my consultant on this one (and the evidence I've read) - that there is, like with most medications, the possibility for tolerance forming as your body gets used to it - but it's a risk I'm willing to take at this point, and I'm very careful about minimising the dosage of any medication I'm on. Consultant says she has been using it in practice for 10 years now, with generally good effect, and no problems with dependence etc.

SmilingAlbert

03-08-16, 00:27

There is a world of difference between dependence and tolerance and we should be careful not to regard the two as interchangeable - they are not.

Sadly, a whole lot of people are most certainly 'dependent' on medications - but why we would decry this in MH patients but not, say, diabetics (insulin), high-cholesterolers (statins), or lord knows how many other things I do not know.

Tolerance is clearly a different animal; it suggests that the drug will require ever larger doses to have an impact and indeed give up being useful entirely over time. Thus it clearly is not a long-term solution, and obviously is problematic from that point of view. There is anecdotal evidence of 'tolerance' about virtually all drugs, including MH ones, but the actual hard evidence is much thinner, including on Pregabalin.

My personal suspicion is that the anecdotes derive from the abusive takers, who whine that the euphoria they first gleaned from taking (often foolishly large) doses is hard to replicate. But euphoria is not what proper MH takers of Preg are after - they just want some relief from crippling anxiety. And the evidence that it helps many, perhaps, most, takers is very significant.

Albert

Nella131

03-08-16, 07:55

I totally agree, SmilingAlbert - and it seemed to me that the GP was very muddled in her understanding of the difference.

And re 'euphoria' - I wonder if the recent reports about the medication being abused within certain settings (prisons, mainly, I understand) have been distorted within certain members of the medical profession - as the GP also said that the reason I felt better on the 100mg a day was because of 'euphoria'...

I told her that at this dosage experiencing euphoria was not a usual experience (and nor was I feeling such) - but sadly she seemed triumphant in her conclusion that it is not a drug that people should be 'allowed'.

Even if I had been crippled by anxiety for the last few years and was now feeling able to resume studies and work - in her opinion it was better that I come right off it.

Unfortunately, even though I'm well informed as a patient (and soon to re-start my training as a MH nurse) I felt I had little chance of being heard, in a situation where everything I said was used as evidence of my 'addiction'.

As you say, SmilingAlbert - dependence on medications for physical health conditions wouldn't be challenged in this way, and I have never encountered a GP who has been unhappy to keep prescribing SSRI's in ever increasing amounts despite their blatant lack of efficacy for me.

It seems as if, as with benzodiazepines and opioids, there is a risk that the messages about the potential for 'misuse' and dependence are preventing some doctors from prescribing pregabalin even when clinically indicated - which would be a great shame in my opinion.

MyNameIsTerry

03-08-16, 08:47

The misuse argument is rubbish anyway. Studies in prisons...those places full of naughty boys & girls (:winks:) aren't relevant to those without a substance misuse problem.

And some of the studies out are written with a clear intention because they talk generally about Preg and yet when you delve into the study the patients were all mixing them with other illegal substances.

And I find it a farce they complain about misuse potential and yet there are still GP's happily hooking their patients on Benzo's and the NHS doesn't seem to have any interest. It's quite simple to tell a computer to run a report of all Benzo takers >X months and then the trusts ask for justification but I bet you no one is doing this. That's the NHS dinosaur for you.

I find it simply laughable that your GP said it should be prescribed to no one when NICE have included into their guidance and lets not forget the drug is not only licenced for GAD but other conditions such as Epilepsy.

And if they want to talk about damage, how about all those people out there on long term anti psychotics, drugs known to cause Diabetes and change metabolism?

It's crazy and just smacks of ignorance. Well done for getting informed and challenging this ignorance to get a better treatment for yourself. And good luck in your training, we need more people like you!

Nella131

03-08-16, 17:15

Thank you MyNameIsTerry :)

Very much agree with the points you make; I only wish I had known in advance that the doc had been going to come out with all that rubbish so that I'd gone in armed with printed copies of the latest NHS England and NICE guidance to show her that Pregab is very much a licensed 2nd line treatment for GAD...but alas I went in naively expecting her to know that... :shrug:

Anyway, all's well that ends well for now - and I just feel lucky that I've had a supportive consultant throughout this who was prepared to get involved if need be. Not always the case for people who only have recourse to treatment through their GP...which can be patchy.

SmilingAlbert

03-08-16, 21:43

+1 to all that.

NHS is indeed a dinosaur, and sadly many people who work in it are also. They just don't bother reading up new drugs etc. as they come up, and get set in their ways. I'm sure many perhaps most GPs are great, and in often trying circumstances, but as with any job, there are lousy ones who don't realise that the days of 'doctor knows best' was killed by Dr Google a long time ago.

Now as we know Dr Google is often very wrong, but the fact is people can and do know a lot more than before, and the old days are never coming back. Dismissing the thoughts and concerns of patients is just not good enough: they are providers of a service that users have paid for.

I have said it before and I'll say it again: a GP friend says that a full 50% of her appointments are directly or indirectly (e.g. psychosomatic physical problems) MH related - which suggests that 50% of all GPs should be MH experts. But the figure is much lower. This needs to change. I respect the NHS and think it does enormous good, but it needs to change.

Far too many people are left withering on the vine, given pills with little warning about often drastic side effects (yes I'm looking at you Mr SSRI 'first line'), or told to get in a very long line for CBT or psych appointments. In the meantime, erm, just manage yourself please, and if you can't, clog up A&E where treating you is vastly more expensive.

In a world that sees to create ever more MH disorders, for whatever reason, it's just not good enough.

Albert

Scorm98

08-10-19, 08:25

An interesting article on the cost of pregabalin and effect on prescribing -

http://www.pulsetoday.co.uk/nice-rethinks-pregabalin-over-cost/12741305.article#.VLMK2yuUeSo

Any doctor can write a private prescription. They just don't use their NHS prescription forms, or cross out the NHS bit.

I found a price of around 80 GBP for 56 x 300 mg Lyrica, If you took one per day (single dose per day not recommended, but would save money), it would cost about 1.43 GBP per day. (The following is for information purposes only - not to be taken as a recommendation or endorsement).

http://www.assetchemist.co.uk/search/oral/LYRICA_CAP_300MG_56_Caps

Nevertheless, since pregabalin is NHS licensed for anxiety, your doctor would almost certainly be duty-bound to write out an NHS prescription.

So I had an appointment with a psychiatrist who agreed with me that pregabalin would be a good medication to try so he wrote a recommendation to my gp to prescribe it. I speak to my gp and he tells me he has to get approval to prescibe it because pregabalin is not licensed for anxiety in scotland. I say ok and he tells me he will get back to me. Three weeks later after calling every week he finally speaks to me and falt out refuses to prescribe it being very rude in the process he told me it has a high street value as a reason not to prescribe it, I was shocked he didnt let me say anything then said i will increase your mirtazapine dose (i have been on 3 different anti depressants with no positive effect).

Basically I dont know what to do I feel this medication could really change my life. I just dont know what to do has anyone been through a similar situation?

Ps. My psychologist who I do CBT with doesnt know what to do either, I've hit a brick wall and need to be medicated properly before I can start improving in any way.

SmilingAlbert

09-10-19, 22:54

Sorry to hear this Scorm. Suggest you read this thread from the start in detail as most of the key themes are here. What has changed is that druggies seem to have sadly taken Preg under their wing in recent years, and that has resulted in Preg changing its legal status and GPs have become more aware of the risks - e.g. that patients will either take dangerous amounts to get high, or take the pills and sell them and use the money for hard drugs etc.

My advice is the same as 4 years ago - change doctors, try and find a good one in the locality a friend can recommend, and take your pysch's letter to them, and maybe even encourage them to discuss between themselves on the phone or in person.

It seems you can get Preg in Scotland for GAD and I think there are examples on this thread. But it's a question of jumping through more hoops than in E&W, sad to say. Good luck - you will get there.

Albert

skymaid

24-10-19, 12:27

My pregablin comes with a little yellow class C warning sticker now - that's the only difference I've noticed.
Tolerance is a strange thing since it doesn't appear to be consistent. I've been on pregablin with diazepam "as needed" (which in my case is use to stretch my boundries for agoraphobia exposure) and i've never felt the need to adjust my doses of any of it.

I guess the problem is since these problem are, after all, mostly in in our minds (well mine is - I won't speak for everyone) the placebo effect is very effective too. Maybe my Diazepam and Pregabalin do nothing at all now but since I believe they do - they do.

Who knows.. as long as I'm continuing to get better I just don't care.

I had to get my Pregabalin initially as a recommendation letter to to my GP from a Priory Psychiatrist and Psychologist assessment session - before that I was just offered sertraline and citopram - nethier of which I was going to touch with a barge pole since I had pretty bad emotophobia (vomit phobia) at the time and those both have nausea/vomiting listed as a common side effect.

panic_down_under

25-10-19, 12:28

I don’t understand as why it is difficult for a script when studies show it’s not addictive..

Some of the early studies did claim this, but experience and more recent data suggests otherwise.

It can trigger dependency to about the same extent as the benzodiazepines (BZDs), and it will induce euphoria at high doses which is why it (and gabapentin) are now classified as a Class C controlled substance in the UK together with BZDs, stimulants and some opioids and a Schedule V controlled substance in the U.S. (Australia has yet to act, but it's only a matter of time). Unfortunately, it has become a drug of abuse and some are dying as a result.

The only advantage pregabalin has over the BZDs is that it doesn't seem to inhibit hippocampal neurogenesis and may enhance it.

MyNameIsTerry

26-10-19, 03:00

Some of the early studies did claim this, but experience and more recent data suggests otherwise.

It can trigger dependency to about the same extent as the benzodiazepines (BZDs), and it will induce euphoria at high doses which is why it (and gabapentin) are now classified as a Class C controlled substance in the UK together with BZDs, stimulants and some opioids and a Schedule V controlled substance in the U.S. (Australia has yet to act, but it's only a matter of time). Unfortunately, it has become a drug of abuse and some are dying as a result.

The only advantage pregabalin has over the BZDs is that it doesn't seem to inhibit hippocampal neurogenesis and may enhance it.

Yep, it only went to a Class C here to allow law enforcement to take harsher action to address it because it had become a street drug. It was common in prisons. Without those campaigning to tighten it up (and bizarrely GP's were criticised for not being more careful in controlling it...which is worrying considering there are worse things they could give you) it wouldn't have changed from a Schedule 4 drug along with all other normal meds.

The Class C campaign also caused the negative attitude towards mental health. Now people struggle to get it more because GP's are worried they will get picked up on it...yet they will write you a script for some Benzo's of Hypnotics much more easily :doh: That's politics for you!

Quinn1

26-10-19, 10:46

panic_down_under

26-10-19, 23:54

Thank You Ian for the information, I think I need to speak with my GP and wean myself off it.

Please don't rush to action. Take the time to thoroughly discuss your options with your GP. Pregabalin may remain the best option for you. There is also a case for staying on it until an alternative treatment, med, or therapy, takes effect. There is some evidence that it enhances hippocampal neurogenesis, the mechanism by which ADs (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC60045/) and therapy (http://tiny.cc/h0xzaz) work, by advancing the maturation of new brain cells (Valente MM (https://www.ncbi.nlm.nih.gov/pubmed/22572885), 2012; Lempel AA (https://www.ncbi.nlm.nih.gov/pubmed/27419661), 2017).

Mollymoo16

05-02-21, 19:32

Hi guys!

Just wanted to say I have been on several SSRIs and SNRIs over 24 years, predominantly fluoxetine, but I got fed up with the HURRENDOUS night sweats and not feeling any affects or reduction on my ocd and anxieties.

With a cry out to my doctor last week, I begged there must be something else to which he said Pregabalin. I had heard of it through my sister (she’s a nurse and had it for fybro) and I innocently said oh yeah pregab. With that he stopped and said oh you’ve heard of it? And I had to almost back peddle in the seconds he could of withdrawn it from me.

Thank god he didn’t and has allowed me to try it out. Again, it’s taken 24 years to be offered this... let’s see how it goes.

On a side note, he will not prescribe me any more Diaz or loraz, due to not wanting me to continue any addictions. I explained it’s not fair as a paying patient I’m being refused treatment that helps me function, whether that maybe for life, he will not do it. It’s sad that this could tip people over the edge. Some people can’t cope without those fast acting meds.... let’s just say I hope the pregab works for me???

panic_down_under

06-02-21, 00:40

I'm melding your two posts into one to aid clarity.

Just wanted to say I have been on several SSRIs and SNRIs over 24 years, predominantly fluoxetine, but I got fed up with the HURRENDOUS night sweats and not feeling any affects or reduction on my ocd and anxieties.

So you've not tried one of the tricyclic antidepressants (TCAs)?

Again, it’s taken 24 years to be offered this... let’s see how it goes.

Pregabalin is a relatively new med and one that also has issues when it comes to treating anxiety, including triggering dependence.

On a side note, he will not prescribe me any more Diaz or loraz, due to not wanting me to continue any addictions. I explained it’s not fair as a paying patient I’m being refused treatment that helps me function, whether that maybe for life, he will not do it. It’s sad that this could tip people over the edge. Some people can’t cope without those fast acting meds.... let’s just say I hope the pregab works for me???

There is a much more compelling reason than dependence for not taking benzodiazepines (BZDs) for anxiety (also depression). While they relieve anxiety for a few hours they actually make things worse in the longer term.

Anxiety and depression are the emotional symptoms of a brain disorder in which high stress hormone levels kill brain cells in the twin hippocampal regions of the brain and inhibit the growth of new ones. In may respects these are a type of auto immune disorder. Antidepressants (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC60045/) and therapy (https://doi.org/10.1016/j.biopsych.2013.05.017) both work by stimulating the growth of new cells (neurogenesis). It is these new cells and the connections they form which provide the therapeutic response, not the treatments directly. For more detailed explanations see also: Depression and the Birth and Death of Brain Cells (PDF (https://www.americanscientist.org/sites/americanscientist.org/files/20057610584_306.pdf)) and How antidepressant drugs act (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3025168/).

The problem with benzodiazepines (BZDs) is they have the same negative effect on hippocampal brain cells as stress hormones do and may significantly reduce the effectiveness of ADs and therapy by blocking neurogenesis when taken for more than a day or two at a time. See: Boldrini M (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4374628/), 2014; Nochi R (https://www.ncbi.nlm.nih.gov/pubmed/23963779), 2013; Sun Y (https://www.ncbi.nlm.nih.gov/pubmed/23639432), 2013; Song J (https://www.kurzweilai.net/how-the-brains-stem-cells-find-out-when-to-make-new-neurons/comment-page-1#comment-96481), 2012; Wu X (http://www.biologicalpsychiatryjournal.com/article/S0006-3223(09)00106-1/abstract), 2009; Stefovska VG (https://www.ncbi.nlm.nih.gov/pubmed/18991352), 2008), plus the 'Ugly' part of Benzodiazepines: The Good, The Bad, and the Ugly (https://journalofpsychiatryreform.com/2016/11/20/benzodiazepines-the-good-the-bad-and-the-ugly/).

I haven’t drunk alcohol for months! I decided to try 2 simple mini cocktails last weekend and I was sick, kept seeing double, 2 faces of the person I was looking at and things across their faces!?

Alcohol can significantly raise pregabalin plasma levels and is thus contra indicated (as it is for BZDs).

Plus, alcohol has the same negative impact on hippocampal neurogenesis as the BZDs and stress hormones. Even moderate drinking can result in significant hippocampal atrophy (https://www.popsci.com/moderate-drinking-bad/)/Topiwala A (https://www.bmj.com/content/357/bmj.j2353), 2017; - see also: Anderson ML (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4568748/), 2012; Morris SA (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2861155/), 2010; Crews FT (https://pubs.niaaa.nih.gov/publications/arh27-2/197-204.htm), 2003). :weep: