Fingers crossed for me!

[Giraffe11]

I am waiting on a call from my GP - I plan on asking to try this drug. I've been sat here reading the threads this morning and am hopeful at the amount of people this seems to be working for.

I have read that some GP's won't prescribe it though, which concerns me ...

I'm currently on Fluoxetine 20mg and Propanalol as and when. Mornings are the worst for me, I wake up in a complete state but as the day goes on I do get some relief and am a little calmer.

I'm confused about all of the dosages that people seek to be on & what I'll be started on (if she prescribes it!) .. How often you go up etc.

What's the norm?

[Giraffe11]

Well that was a waste of time :-(

She said that no-one around here will prescribe it, not even for pain. The only person that might is a private pdoc..

Feel very low now.

[goldsounds]

That's very strange - can you possibly change surgeries?

[Giraffe11]

I'm seeing my usual GP on Tuesday, so will bring it up with her then.

To say I'm gutted is an understatement!

[SmilingAlbert]

Hey Giraffe,

Yes, as you have read Preg can be very useful for anxiety, and having read your post on the Prozac board, I think it *could* be helpful, though I don't know anything about the migraine angle I'm afraid.

Sorry to hear that you can’t get a prescription; it is a listed 3rd line drug for anxiety in England (and perhaps Wales), though not it seems Scotland - where are you?

NHS info here:
http://www.nhs.uk/medicine-guides/pages/MedicineOverview.aspx?condition=Anxiety&medicine=Pregabalin&preparation=Pregabalin

and here:
http://www.nhs.uk/Conditions/Anxiety/Pages/Treatment.aspx
If SSRIs and SNRIs are not suitable for you, you may be offered pregabalin.

This sort of thing makes me pretty angry. The medical establishment still seems to think the internet doesn't exist, and that people still live in a "doctor knows best" world and will accept 'what they're given'. Well they won't, and you shouldn't. Don't just accept your illness - there are things out there which can help you feel better, and Preg *may* be one of them.

Drugs are invented for a reason - they are (usually) better than the ones out there already. Big drug companies get a bad rap in many quarters, but the hard work and, yes, investment - made in inventing certain medicines has literally saved my life and that of millions of others. In my case, drugs in the area of mental health (MH), but elsewhere in many others.

Remember when HIV was a death sentence? Not any more, thanks to brilliant scientists working for 'evil drug companies' like Glaxo and others.

Pregabalin up until recently was expensive as it was still on patent from its inventor, Pfizer, and that has been a reason for non-prescription of it, though as a doctor said to me, the cost is nothing against the personal and societal costs if you who can't work through stress and anxiety.

However, the patent in the UK for Preg for anxiety (though not for other problems, which has confused matters somewhat) has just come to an end and its now available as something called "Lecaent", which, like most generics, costs less.

You could go private, but then you will end up with a private prescription - Pfizer Preg, called Lyrica, costs a lot:

£85 per month for 300mg/day (medium/high dose)
http://www.urbanpharma.com/buy-lyrica-pregabalin-150-mg.html

With Lecaent, you will need to find a pharmacist who has it (might be trick as it's so new) - and the cost seems to be £64.39 for the same
http://www.mims.co.uk/drugs/central-nervous-system/anxiety/lecaent

So less, but assuming you'll be on it for a while, it will add up.

If you care, there is a complex reason for why generic pregabalin isn't cheaper, YET:
http://www.wavedata.co.uk/btn/generics%20bulletin/Pfizers%20prices%20push%20patented%20pregabalin%20 24%20Apr%202015.pdf

So I reckon your options are:

1. Print out all of the above (and anything else you can find) and show it to your GP. Sadly, even though it is their job, they are GENERAL practitioners and don't/can't know everything.

2. Ask to see a GP with some special interest in MH; your practice may have one.

3. If still no good, try to find a new sympathetic GP, at a different practice - ask around your friends, your friends' friends, that sort of thing.

4. Find a good private psychiatrist - an appt will cost £100-£200, which admittedly is steep, but you may only need to see them once or twice. Tell them you've tried everything else, and have heard good things from Preg, and would like to try it. Ask them for a prescription, and ideally for a letter about it, and then go back to your NEW GP, and say that you would like a NHS prescription, as you can't afford it privately. OR, you could buy one month's dose privately, see if it works, and if so then go back and say "hey it works, pls give me an NHS prescription as I can't afford to buy any more of it."

And if they still won't play ball, go and see your MP, and explain it all to them; if they are any good, they should trust your word and the word of a psychiatrist, and in my experience, can really make a difference with the authorities.

"4" incidentally is the route that worked for me, and I had no problem getting one (I didn't need the MP!).

The NHS is a wonderful thing in so many ways; try being ill and poor in the US, for example.

But consumer-friendly and patient-centred it often is not, and the knowledge of MH issues in GPs is variable, to say the least. A GP friend of mine says that around 50% of her appointments are MH related, so why on earth 50% of GPs are not trained up to be MH specialists (with IN DEPTH knowledge of all the main 1st/2nd/3rd/4th lines MH drugs) I do not know...

And yes CBT and the rest can be helpful, but that takes time and you will have to go to the end of a long queue: to be told you can get CBT in 3 months time is profoundly useless and unhelpful when getting through the next 3 hours can seem a challenge (and yes, I have been there and yes, it still makes me mad...)

The key thing to remember is that the answer is out there, and you WILL feel better when you get the correct treatment. In the meantime, keep up your personal fitness and read some good books etc.
Make some plans of what you are going to do to enjoy and appreciate life when you get there now, so as to have something to look forward to, and pls ask me more Qs here (or PM me) if you’d like more advice, and there are plenty of others who can help too.

Good luck!

Albert

[hanshan]

Without the expense of a psychiatrist, you can also ask your doctor to refer you to another GP for a "second opinion" (it's difficult for them to refuse that). Then go armed with printouts from NHS saying it is licensed for Generalised Anxiety Disorder (except in Scotland, it seems). Pregabalin isn't licensed for migraine, so asking for it as a treatment for that is not recommended.

[Giraffe11]

Thanks for the posts!

I'm in England Albert..

She was just absolutely adamant about it. As I said I'll try my usual gp on Tuesday when I see her and have a chat with her about it, she's a lot more sympathetic and understanding.

Just so hard isn't it!

I will go armed with some information to give her too..

I am already having CBT, have had around 4 sessions now. Not sure if it's helping or not really. My therapist is lovely, but when I had cbt before for anxiety it seemed to have more effect..

[Michelle1]

Hope you do manage to get a prescription for Pregabalin. I've just started it recently. Seen improvement already on a low starting dose.

Good luck and let us know how you get on

Michelle

[MyNameIsTerry]

On top of the excellent information Albert has given you, show them this:



https://www.nice.org.uk/guidance/cg113/chapter/1-guidance

Drug treatment

1.2.22 If a person with GAD chooses drug treatment, offer a selective serotonin reuptake inhibitor (SSRI). Consider offering sertraline first because it is the most cost-effective drug, but note that at the time of publication (January 2011) sertraline did not have UK marketing authorisation for this indication. Informed consent should be obtained and documented. Monitor the person carefully for adverse reactions. [new 2011]

1.2.23 If sertraline is ineffective, offer an alternative SSRI or a serotonin–noradrenaline reuptake inhibitor (SNRI), taking into account the following factors:

tendency to produce a withdrawal syndrome (especially with paroxetine and venlafaxine)

the side-effect profile and the potential for drug interactions

the risk of suicide and likelihood of toxicity in overdose (especially with venlafaxine)

the person's prior experience of treatment with individual drugs (particularly adherence, effectiveness, side effects, experience of withdrawal syndrome and the person's preference). [new 2011]

1.2.24 If the person cannot tolerate SSRIs or SNRIs, consider offering pregabalin. [new 2011]

1.2.25 Do not offer a benzodiazepine for the treatment of GAD in primary or secondary care except as a short-term measure during crises. Follow the advice in the 'British national formulary' on the use of a benzodiazepine in this context. [new 2011]

1.2.26 Do not offer an antipsychotic for the treatment of GAD in primary care. [new 2011]

1.2.27 Before prescribing any medication, discuss the treatment options and any concerns the person with GAD has about taking medication. Explain fully the reasons for prescribing and provide written and verbal information on:

the likely benefits of different treatments

the different propensities of each drug for side effects, withdrawal syndromes and drug interactions

the risk of activation with SSRIs and SNRIs, with symptoms such as increased anxiety, agitation and problems sleeping

the gradual development, over 1 week or more, of the full anxiolytic effect

the importance of taking medication as prescribed and the need to continue treatment after remission to avoid relapse. [new 2011]

1.2.28 Take into account the increased risk of bleeding associated with SSRIs, particularly for older people or people taking other drugs that can damage the gastrointestinal mucosa or interfere with clotting (for example, NSAIDS or aspirin). Consider prescribing a gastroprotective drug in these circumstances. [new 2011]

1.2.29 For people aged under 30 who are offered an SSRI or SNRI:

warn them that these drugs are associated with an increased risk of suicidal thinking and self-harm in a minority of people under 30 and

see them within 1 week of first prescribing and

monitor the risk of suicidal thinking and self-harm weekly for the first month. [new 2011]

1.2.30 For people who develop side effects soon after starting drug treatment, provide information and consider one of the following strategies:

monitoring the person's symptoms closely (if the side effects are mild and acceptable to the person) or

reducing the dose of the drug or

stopping the drug and, according to the person's preference, offering either

an alternative drug (see 1.2.23–1.2.24) or

a high-intensity psychological intervention (see 1.2.17–1.2.21). [new 2011]

1.2.31 Review the effectiveness and side effects of the drug every 2–4 weeks during the first 3 months of treatment and every 3 months thereafter. [new 2011]

1.2.32 If the drug is effective, advise the person to continue taking it for at least a year as the likelihood of relapse is high. [new 2011]



NICE covers England & Wales so they have no excuse. You can clearly say they should consider offering it.

GP's do like to "try it on" and its not just Pregabalin either as I've seen one try it on with a long term member on here for Trazadone which again was purely a cost issue.

I guess you could also remind them of the details of the oath as a licenced doctor in the UK but they probably wouldn't like that. (I believe it does mention doing the right thing regardless of cost implications) :whistles:

Don't them bluff you over possible addiction either. That does seem to raise its head when the media (and those who feed it to the media) try to bash Pregabalin but there is zero evidence out there and as you will see in Albert's "Pregabalin in the news" thread, the studies conducted are pretty dubious in terms of bias.

[Giraffe11]

Thanks Terry - I've got a telephone appointment booked with her later on today. I'll bring it all up. My next avenue was going to be Mirtazipine or Quetapine but I have just seen above it says no antipsychotics in primary care. So guessing she wouldn't prescribe the latter for me either.

[SmilingAlbert]

Good luck!

Mirt + Preg can be a good combo for overall calm - several of us here are on this to mostly good effect...

SA

[Giraffe11]

Ok just had the phone call. She said that its blacklisted here in Buckinghamshire so there's no way I can have it.

I asked her about a few other things and she said the difficulty with me is that I am quite sensitive to meds & what I have suggested are strong drugs. She said that with the Mirtazipine that might be something to consider, but that she wouldn't want me on them the same time as the Fluoxetine.

She's prescribed me Trazodone. I've never heard of it, but she has said its safe to take with my Fluoxetine and Propanalol and will help me sleep & is very good for anxiety .. One to be taken at night only, I'm just about to go and collect the script.

Anxious about it all now, hate trying anything new :-(

[Michelle1]

Why do they say it's blacklisted?
Because it's a bad drug, or because of cost?

Don't like the word blacklisted (scares me)

Hope it's just because it's an expensive drug x

[Giraffe11]

I imagine that's exactly what it is! Xx

[MyNameIsTerry]

They can be seen prescribing it though, see the Freedom of Information Request in this link (I wonder why this guy raised that? To prove such a refusal wrong maybe? :winks::whistles:)

http://www.nomorepanic.co.uk/showthread.php?t=161319

[MyNameIsTerry]

Further proof they have been prescribing it, although they don't appear in the more recent CCG dispensing columns so they appear to have stopped in primary care:

https://www.google.co.uk/url?sa=t&rct=j&q=&esrc=s&source=web&cd=29&cad=rja&uact=8&ved=0CFMQFjAIOBQ&url=http%3A%2F%2Fwww.seqo.nhs.uk%2Fbuckinghamshire %2Fshared%2Fimages%2Ffiles%2Fccg-prescribing%2FClinical%2FFormulary%2520and%2520TLL %2FBucks%2520Formularies%2FPrimary%2520Care%2520Fo rmulary%2520Final%2520Aug%252011.xls&ei=zExxVYaxGYqs7Ab4zYBw&usg=AFQjCNHCmOIOJ4rQlA620MXhKcYC-FZOKQ&sig2=G0oyYryAXie7SvN8qEcMqQ

That could mean they have left it to consultants to continue with since the FoIR in the above post shows some numbers into 2014 (unless prior to the cut off in this list maybe? It seems unlikely though given that was a hospital hence not primary care)

Given there are a whole load of CCG's on there who have continued to issue it in primary care, the issue is not one based on any evidence and its a purely local trust level decision...hence it will be purely financial and not with the patients best interests in mind.

This one does indeed show it as blacklisted BUT whilst it says for all indications its actually mentioned against Neuropathic Pain and Gabapentin is described as the drug to use. Gabapentin is cheaper and there was some press about them shifting people onto it purely on that basis:

http://webcache.googleusercontent.com/search?q=cache:DMmVDFj1VqkJ:www.seqo.nhs.uk/buckinghamshire/shared/images/files/ccg-prescribing/Clinical/Formulary%2520and%2520TLL/Bucks%2520Formularies/Primary%2520Care%2520Formulary%2520Final%2520Aug%2 52011.xls+&cd=29&hl=en&ct=clnk&gl=uk

If you look at Pregabalin in the Buckinghamshire Formulary you will see that it is noted as "non forumlary" for not only anxiety disorders but Epilsepsy & Neuropathic Pain too! So, this is an across the board decision and not connected to anxiety.

http://www.bucksformulary.nhs.uk/searchresults.asp?SearchVar=pregabalin&Submit=Search

Something interesting though is on the About page where it says the following:

http://www.bucksformulary.nhs.uk/about.asp

How should the Formulary be used?

It is recommended as a first "port of call" when making choices within a therapeutic group. The formulary is not designed to replace the BNF. All prescribers should continue to refer to the current edition of the BNF, supplemented as necessary from specialist publications and manufacturer's Summaries of Product Characteristics (SPC).

This is what the BNF says for Pregabalin:

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

Indications
peripheral and central neuropathic pain (section 4.7.3); adjunctive therapy for focal seizures with or without secondary generalisation; generalised anxiety disorder (section 4.3)


So, if the local formulary, which is based on local decision groups, is purely a guide and DOES NOT replace the BNF then why can't they prescribe this to be inline with the BNF? Sounds like a load of penny pinching politics to me because the people higher than this local trust see no issue with it!

The BNF is now shown on here https://www.medicinescomplete.com/mc/bnf/current/search.htm?q=pregabalin&searchButton=+ but I can't access it without registering an account. It would be interesting to see if anything has changed.

I think people need to confront this local trust/CCG or whoever is in charge thesedays and ask them why they are unwilling to prescribe a drug that is licenced by the MHRA and agreed for anxiety (as well as other conditions) by the BNF and a couple of hundred CCG's are still prescribing it!

I can see posts on forums about Bucks in 2012 saying it is blacklisted. So, why do the reports above show them issuing it in primary care then? That stinks.

Remember that link above which shows it as blacklisted in the column for Neuropathic Pain? Well if you look in column 16 it quite clearly says there is a form for prescribing blacklisted medications in primary care because they have to getv PCT approval first. So, they can do it if they want to or why bother having a process for it?

If you now go back to their local formulary About page you see the following:

Formulary Restrictions

Drugs may be subject to several levels of restriction:-

Prior named patient approval (eg. for high cost drugs)
NICE Compliance / High Cost Drugs - Consultants need to complete these forms (link) to confirm compliance with NICE criteria

Defined consultants
Defined specialties
Defined indications
Unrestricted prescribing in primary and secondary care
Traffic light system categorisation across the health economy. (Please see link to Bucks traffic light system on right)


So, does that mean a high cost drug needs approval first and/or it requires Consultant approval?

[hanshan]

Hi Terry,

Thanks so much for searching all that out. You just about need to go in to an appointment with a lawyer beside you.

[Giraffe11]

What a nightmare :-(