Doctor insisting I change AD - scared

[scarecrow22]

I have been taking Venlafaxine (150mg) for about two years after significant breakdown. Prior to that I had had what in retrospect were depressive episodes since I was a teenager, including much of the previous ten years.
The slow release Venlafaxine works fantastically if I take it at approx the same time every day, which I mostly do. My GP under pressure from the PCT is now insisting I switch to another form: I would take two doses a day, with no slow release. the reason is to save money, I think £85 a month.
Because I get low and negative very quickly if the meds are not so carefully spaced I am really scared of this. I have tried to protest, especially as I am about to go back to work after dd1, and am still BF. But GP is insisting.
Has anybody been in this position? Can you advise me how to stop them making me do this, at least until work and BF are sorted? Or can you reassure me it will be fine?
I struggled alone with this for so long I can't bear the thought of going backwards again, but will listen to reassurance...
Thankyou.

[Marne]

It seems silly to change if you have found something that works well for you, i would be tempted to change GP's (if you can), i'm not sure what else you can do other than argue your case with your GP.

[madmouse]

I would be totally against you having to change your meds for no good reason at all. But there is a reasonable question regarding the fact that non-slow release works fine for most people and is a lot cheaper (because the makers of generic meds don't tend to make slow release). So what is the reason why you need slow release?

Another question is whether after two years you should still be on the same meds and the same dose without considering what happens if you come off, or has it been decided that you need to be on them for life? What else has been tried to help you feel less depressed? Have you had talking therapies? The getting negative and low so quickly would suggest you are a candidate for some thorough CBT.

If you are absolutely sure that only this particular slow release will work for you I would suggest contacting your MP. It will be hard though if your GP is not on board.

[scarecrow22]

Madhouse, I had CBT and it also helped hugely, and I still use skills regularly. I therefore second the recommendation!
I was told I might be on it for life, so even if not literally true will be a long time I guess.

[Upwardandonward]

Some PCTs don't allow certain drugs to be prescribed - if you google 'pct name' and formulary, you may come up with this.

It may be that (if taking the meds regularly), there is no/a very small difference as far as blood levels go between taking extended release once a day, or taking standard release twice a day.

I'd also agree with asking whether you should still be taking it etc.

[NanaNina]

I think it is horrendous that you are being made to change meds that you know suit you, because of finance. Unfortunately I think finance is going to become much more of an issue because of the viscous cuts that this damn government is making.

I recall that people suffering with cancer who were being denied certain drugs, made a big fuss (In the local press) and writing to their MP and getting it in the media in any way that they could. I am not sure of the outcome to be honest but i have a feeling that these people who shouted loudest got the drug they needed. I think it is acceptable that medics have to decide whether a drug (especially expensive ones) are clinically necessary, i.e if a particular drug is only going to extend a cancer patients' life for a matter of weeks and is going to take a large slice of the budget, then I can understand a decision made not to give the drug (mind don't know if I'd feel like that if I was a cancer patient). However with depression it is nothing like this, it is just to save money.

I am now worrying in case my PCT decide my ADs are too expensive. Have you ever been involved with a Conslt Psychiatrist and if so did he/she decide on the drug, or was it just the GP. If the former you could appeal to the Conslt Psych. If not, you could try changing to another GP practice, but before doing so you would need to know their position on the issue of the drug and finance.

Really feel for you - it could well make you more depressed, which would not be cost effective in terms of drugs/GP time etc. Please let us know how you get on because I have a feeling that this is going to happen to a lot more of us, and like you I would be scared if my GP insisted I change my meds.

[Chocattack]

I completely understand your concern about having to change. Are you currently taking venlafaxine as a slow-release capsule such as Efexor XL? It is definitely about finance (from the GP/PCT perspective) but venlafaxine is available as a modified release tablet (brand name Venlalic) and this is taken once a day. Can you ask your gp about this as it costs significantly less than the capsules and he/she may agree as a compromise?

Personally, I would avoid the twice a day non-slow release version. These made me feel more nauseous than the slow-release version, also I found the 12 hour spacing impossible to maintain because you're meant to take with food, and also found that the evening dose interfered with my sleep by making me quite 'wired'. Of course you might not suffer with the same side effects as I did, but having been on all 3 versions (slow-release capsule, non-slow release tablet and slow release tablet) I can't say I noticed the difference between the first and the last, other than the cheaper one doesn't have the days of the week printed on the blister pack! Mildly annoying if you can't remember popping your pills or not.

[ThatsNotYours]

How outrageous! Certainly the branded Efexor XL is about x4 more expensive than say an AD like Citalopram but Venlafaxine isn't some new, experimental drug.

This sounds more like the GP practice trying to manage their budget rather than the PCT formally removing it from one they are willing to finance.

I would stick to my guns and ask the GP if the PCT or the GP practice are refusing to finance- and either way complain to the PCT if no joy.

Also, the main reason for the extended release version is that the side effects are apparently much more tolerable than one or two big hitting tablets. Good luck!

[ThatsNotYours]

Ultimately, if money isn't too tight you could get it on a private prescription if all else fails, and you really find other ADs don't work as well. 

Efexor XL 150mg, 28 days = £54

Totally sucks though!

[scarecrow22]

Thanks for messages and advice. Ironically just after reading it all I opened new prescription - I persuaded GP to give me last month's supply of slow release as I'm in Australia with husband's work and didn't want to make change while so far from home: turns out he switched prescription from capsule to tablet. If it was mistake pretty rubbish one, if it was deliberate surely a monstrous breech of trust? I felt so betrayed had to employ all positive thinking to make sure didn't 'create' bad reaction. Think it's okay but am flat and tired and now not sure if switch or just looking after 8mo baby alone so far from home.
Thanks again

[scarecrow22]

Btw, Thatsnot, can you tell me where you got cost figures from? GP claims save more than total cost you quoted per month so would be interested to bottom out real costs. I already had to pay a lot for CBT because realised I could not go back to work without it and once crisis passed waiting list was nearly a year plus, so rather resent paying for meds too, especially when I pay far far more in NI and tax every month than it costs them...but I guess that's not how it works ...

[Upwardandonward]

I think the real costs are complex - I looked into getting a private prescription at one time for a drug that couldn't be prescribed by the GP, and was told that the price in the BNF is not representative of what you'd be asked to pay as a private patient.

I hope you get some resolution soon - sounds like there are stresors for you at the moment.

[ThatsNotYours]

Scarecrow22 I pay for my Efexor xl on private prescription which I collect from Tesco's pharamacy, so it actually what I get charged.

[ThatsNotYours]

S22
Saw my private doc today who prescribed the generic Venlafaxine MR (modified release) rather than Efexor XL (last month's script). No odds to her as her practice don't incur any prescription costs - I do. (Make is 'Alvenenta XL'.)

Know the patent on the XL version recently expired in the US in the summer. Clearly generic is now available in the UK! 

Sorry, had a load of other meds so cant remember the exact price, but was less than NHS charge.  So, will let you know how things go, but brand name is irrelevant after patent has expired. Hope this update helps. X

[scarecrow22]

TNY - and Upward - thanks for that info, really helpful, and a good basis for doing more investigation myself. If I'm right in understanding private patients sometimes pay less than the nhs for some treatments, that is really a scandal, surel!
Thanks for your support.

[ThatsNotYours]

Remember though some you win on and some you will lose on - that's the NHS - one prescription charge rate.

Lots of people can't afford to pay private prescription costs, esp for cancer based treatments. It's kinda swings & roundabouts to be honest.

Will let you know how I get on with the generic. X and well wishes!

[scarecrow22]

In case any of you kind well widgets and interested parties see this... Got my psychologist to intervene and GP has put me back on original meds. I also contacted Mind legal advice line (www.mind.org.uk/help/advice_lines), who told me how to appeal, starting with the Patient Advice and Liaison Service, PALs); while you are appealing they have to keep you on your original meds.
Finally the campaigns team at Mind is also collating info on this, if you have experience of it.
Take care all

[scarecrow22]

Predictive text, bah! "well wishers", of course....

[ThatsNotYours]

S22 you take care too! X

[timidviper]

Slightly different viewpoint here S22 as I work with medicines budgets and our GPs are encouraged to use cheaper medicines "where clinically appropriate" and that is the key phrase, only if it is a good decision in medical terms, not just in cost ones. I would think your GP should not suggest a change unless available research and evidence suggests that your condition would not be affected and it would clearly be counter-productive for his budget if you were to worsen and need more treatment but obviously I can't tell you if that is true in your case

I can understand you being nervous and do sympathise with that but sometimes we are all creatures of habit and resist change that would not harm us and, in some cases, may even lead to improvement. The NHS does not have infinite money and some economies have to be made if we want treatments to be available in the future

There is no clinical difference at all between the tablets and the capsules but the tablets are about half the price. Many areas recommend these so maybe that would be a reasonable thing for you to try if you have a healthcare professional you trust to reassure and support you with the change.

I don't want you to think I am being unsympathetic but I do see a lot of patients who do not wish to change meds even when it is cheaper and better for them in health terms just because it hasn't been properly explained and handled. We have had numerous people who, after changing, have been better than before and we all have to do what we can to help the NHS.

I am happy to look up anything and let you know any evidence/advice if you ever want to PM me.

[scarecrow22]

Timidviper - I hear you, and appreciate you offering the "other" pov so sensitively.
I hear the argument, and as a rationalist and pragmatist, do understand no budget is infinite. What annoyed me in my case was firstly my GP was insisting not on changing from MR capsule to MR/PR tablet, but to non MR tablet. Secondly when I tried to have a constructive conversation about my concerns (bear in mind the GP I was seeing has NEVER asked me about my meds, not even when I got pregnant, nor about my mood, or anything pertaining to why I take them, she (and later another he) did not listen at all, nor appear to have any interest in engaging with me to reassure me and explain or discuss my concerns. They also totally dismissed the psychiatrist's advice not to switch to non MR, without any discussion, and then switched the prescription during a trip to Australia, when I was alone with baby for 12 days, despite telling me they would not force switch until I returned (ie the next month's prescription).
My concern is with badly handled cases, not with the underlying principle of trying to manage budgets better.
Hope that makes better sense.

[scarecrow22]

By the way TV I would be really interested to know some things: why do they have capsules if tablets really are same (I had kaleidoscope hallucinations for 2 nights after started taking PR tabs in Aus (usu - for me - associated with drug wearing off, I think)?; also is there a diff between PR and MR?; finally, what does NHS pay for 28 capsules?
Sorry am stuck on this...am moving on!!

[StickyGhost]

Hi Scarecrow, I took Venlafaxine M/R tablets (150mg) daily exactly like u for about 8 years with no problems from my GP. I think my GP was a particularly understanding one as he never pressured me to even think about changing - I have heard from many friends about their own GPs often pressuring them into stopping/changing/reducing ADs. Could you consider changing GPs when u get back to the UK?
I think it's a bit off trying to make u change ur prescription when ur not ready, especially with having a very young child and it being a somewhat unsettled time in life as ur away.
Could you also hammer the case for staying on ur present set-up because of the withdrawl/side-effects that might come with a change - and which you sound like you have been experiencing already. Venlafaxine is notorious for the withdrawl symptoms you get when you try to come off it or change ur dose (I had virus-like symptoms for a couple of months after stopping it and it was very hard just to live a normal life tbh). I know u'd essentially be going onto the same med but I'd be inclined to think there might likely still be some side-effects (sorry not trying to scaremonger, but this could be a useful tool in ur arsenal!).
Hope things work out ok for u, good luck.

[scarecrow22]

Leonie - thanks. Saw and now I have Googled BNF am a little wiser!
StickyG - thanks for support. Have got old meds back...for now! Have been told am prob on them for life, which is cool by me, frankly, though interested you came off them after so long. Sounds tough ride, but are you okay now? How on Earth did you know/think you would be ok? Sorry rather personal, so feel free to ignore me. Forza!