Medication, Treatment & Dosage Confusion

[alias_kev]

I know I haven't been a member for all that long but I've noticed a repeated theme (for me anyway) and I thought I'd start a thread about it. I'd almost like to evolve it into a sticky-post at some point.

Sometimes when reading member's messages I (we?) will see something that jars quite badly with our personal experience or our reading and understanding of the medications used for our illnesses.

Examples I have seen in the past few months include:
a) People reporting having Escitalopram at very high doses,
b) People reporting having Diazepam at very high doses
c) Slow acting medication being stopped because there is no rapid effect
d) People on powerful medications (even maximum dose) that is doing them little or no good
e) People on medication only loosely related to their condition
In practice this list could go on, and on - I've even ignored cold-turkey.

I am interested to hear if others have noticed these situations...

Do you think some of what we hear is confusion by the patient/member (eg. wrong name, wrong dosage typed, wrong dosage taken!), or confusion by GPs (eg. prescribe X using the dosage rules of Y, having no idea what medication could actually help, not recognising that the patient has anxiety behind their depression or stress) or PCT's steering prescriptions (eg. encourage the cheap, discourage the expensive).

Giving more detail on my first observations above:

a) People have listed dosages which they say are Escitalopram, but would be high doses of Citalopram. Several examples occured in the Esc' forum. The alarming thing is that Esc' is documented (PIL, SPC) as having a maximum dose of 20 mg/day and I've seen information that there have been debates over whether 10mg and 20mg are actually different. (From personal experience there are stronger side effects at 20 mg/day, its a little less clear if the benefits increased too). And these reported doses were well above 20 mg/day.

So either:

• we have members giving us confused information, possibly in this case because the generic name is very similar.
• we have doctors regularly prescribing well above the tested dose.

b) This is actually a recent post and the poster was foreign. Therefore its hopeful that there might be something lost to a language barrier. This poster described being on a foreign form of Diazepam. Now if this is 100% comparible with our version then the dose was incredibly high. The highest I could find recommended was about 60mg/day and the poster reported 100-140 mg/day. Even if it was not diazepam, and thankfully they implied they'd only had it for a month - that would be massively above normal dosage.

So again either:

• we have members giving us confused information, possibly in this case because of a foreign brand name or language issues.
• we have doctors regularly prescribing well above the tested dose.

What is extra worrying about (a) and (b) is that there is atleast one fairly common common medication where the difference between the highest safe dose and the lowest dangerous dose is pretty small. Also most of the meds warn of things like seratonin syndrome, rebound symptoms on withdrawal and so on. This makes either patient or GP confusion a more serious thing.

c) The SSRIs, other antidepressents and even my anti-anxiety Buspirone all take some weeks to have a full beneficial effect. Indeed the only thing that turns up quickly with these are side effects which with luck mitigate over those first few weeks. There is some contradiction in the sources I usually find about how long the "some weeks" is for both positive and negative effects, but it seems to be atleast 2 to 4 weeks.

So if a member or patient actually needs a fast acting treatment they clearly haven't been given one. Alternatively they haven't been prepared for the delay - we live in a very instant world and I think it can come as a shock that the medication is not a magic bullet.

The situation with these slower medications is perhaps ever more serious since I noticed that the latest leaflets on Diazepam recommend that it is only used for (a total of) FOUR WEEKS. On this site we are more likely to be aware of the downside of all the 'azepams but when they start saying four weeks for the (arguably) easiest of them times are changing. In the 1970s some people had been on 'azepams for years already.

d & e) Even in my short history of treatment (since June 08) I've noticed a kind of blindness in the professionals. There seems to be a strong reaction to the word depression and/or the word stress. If you even mention anxiety to them it goes almost unnoticed. Even to us the patient the anxiety that can be at the root of our conditions may be invisible to us swamped by the more visible symptoms of depression (sadness, withdrawal) and stress (anger, sleepless nights, etc). Certainly to begin with I accepted the professional view that I had "stress" and later on "depression and stress". In reality I reckon I had GAD all along. The stress and depression were side effects of the illness. This is not true for everyone.

I had a brief CBT group course aimed at "Stress, Anxiety and Depression" but really the middle topic was the least well served. There was one other person there who agreed with me that the anxiety was the root of their situation.

Interestingly the NHS's own GAD-7 test yielded an almost maximum score (20/21) for me originally and not much lower after 8 months. So had my GP accepted the anxiety and used the information available to him it would have been clear that GAD should be the first target for treatment.

There was a member on here recently who reported the maximum dose of an anti-depressant which not-that-surprisingly had not stopped the anxiety they had suffered since childhood but was giving lots of side effects including depersonalisation. So again this blindness of doctors to treat the visible symptoms in the most trendy order is quite alarming.

Its also reflected in the number of people who've mentioned or been given meds like Beta Blockers. These ONLY work on the physical symptoms of anxiety and do nothing to fix the original problem. Its like giving you pain killers for a broken limb, you may be glad of them BUT you need proper treatment as well.

Sorry to ramble on but this stuff is starting to get on top of me.

Basically we seem to be at the mercy of people who do not understand our condition. or our medication, or listen or learn. And often as anxious patients we may be in no state to learn ourselves or challenge their failings.

[sharona]

Great post especially for newbies.

Thanks

sharona

[nomorepanic]

Good post Kev - thanks for taking time to write it and I agree with what you say.

I try to explain to people that meds won't cure you just relieve symptoms for a while but I think I am fighting a losing battle lol.

[alias_kev]

Thanks Nicola. I tend to have a research orientated mind - its just not so good at doing it for my own sole benefit -

I was sort of trying to emphasise some points that cloud both sides of the: medication-is-it-good-for-you debate.

Comparing what people post as happening to them (meds and dosage) versus the published information for the meds so often raises concerns. Either some people are confused or their GPs are! eg. Since I joined several people have claimed Escitalopram at doses that would be high for Citalopram! Unless they are just confused about the dose (bad enough as they take it every day) either they are posting/reading about the wrong medication (confusing for us and very misleading for them) or the GP has apparently prescribed drug B at the dosage for drug A (scary indeed)...

Having been here so long - do you reckon its the poster (who after all is suffering) or the medics? Perhaps the question should really be medics-are-they-good-for-you?

I certainly recommend that everyone reads up about their own medication after checking the names and dosages very precisely. If unsure - ask your pharmicist to clarify them. Good Information on many medications can be found at http://emc.medicines.org.uk/ amongst others. A distributor also emailed me a copy of a PIL when I emailed a query to try and resolve an issue posted on the forum. It took a week or so but I got it - after all its public information.

I think we have to be prepared to ask questions about "why this?", and "why so long?", and "its not working enough - what else can we try?". And even "why take me off this now when its working?". There can be good and bad answers to the questions but sometimes they have to be asked.

I find I worry about the posters on "unusual dosages" (high or low) or on "marginally relevant" medication for years.

Sorry - I'm rambling again. Good Night All.

[tom1]

As usual kev, your contribution is a very informative read.

I also think doctors need to be aware of some of the risks in generic brands on some medications, even if the ingredients are ever-so-slightly different. Take for example my medication Venlafaxine it was ok until I got a generic brand and from there it turned into a hellish experience after 1.5 months of no real bad side-effects on the proper med. It's not the first time I've heard of this either, it appears to happen in other generic forms of other medications too.

I sometimes feel that some GPs really aren't suitable for giving advice and prescribing of medications concerning mental illness. Don't get me wrong, I know there are some wonderful doctors out there who know there stuff but equally there is also some who don't.

The only time I had a very understanding experience was when I was seeing a Psychiatrist. He knew exactly what dose to put me on, how long for, and what type of med. My GP on the other hand... not a clue! I actually knew more than my GP... which is slightly worrying when you need help!

I also find GPs tend to just give you a bunch of pills and send you on your merry way, disregarding the alternatives.

Sorry to rant, but this is just something I've experienced that I thought I should share.