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What's the general rule of thumb for medication withdrawal?

Discussion in 'Sleep' started by Sasha, Jul 25, 2015.

  1. Sasha

    Sasha Fine, thank you

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    I've been on a very low dose of Pregabalin (Lyrica) for several years for insomnia (not pain or depression, fortunately for me) and now need to come off it (because it might be contributing to other problems). I've read up on the net about how to taper off neuropscyhiatric drugs and the story seems to be to taper by 10% every three to four weeks. This 10% thing is also the advice on the site of widely respected MIND UK, who say:

    It is usually suggested that you should start withdrawal by reducing your dose by 10 per cent (one tenth). So if you are taking something at 20mg per day, you would reduce by 2mg and take 18mg for a few days.

    If you get on all right with this and do not develop any withdrawal symptoms, you can reduce by a further 2mg, and take 16mg.

    As you reduce the doses, you might need to reduce the dose by smaller amounts. Many people find that as they reach lower doses, they are more likely to get withdrawal effects.

    Each dose reduction may cause increased anxiety and sleep disturbance, which should stop after a couple of weeks. You may also be sick. These are signs that you are reducing too quickly, and you should put the dose back up to the last level at which you were feeling ok. Your symptoms should then stop. When you feel ready, you can try reducing again, by a smaller amount. At each stage, make sure you are ok on the dose you have reached before reducing further.​

    MIND don't mention Pregabalin specifically so I phoned a pharmacy and they agreed that reducing my dose very slowly was wise and that it might take me as much as a year to come off it.

    I then spoke to my GP who said that she has seen loads of patients come off it with no problem by cutting the dose by a third and then a further third and then off (I don't know over what timescale but had the impression it was short).

    My question: if I reduce my dose by whatever amount, how long should I wait to see if it has caused me problems, before continuing with another dose reduction?

    I gather it's not to do with the half-life of the drug so much as how long it takes your neurons to get used to not having the drug.

    I'd rather be safe than sorry - I don't want to have to put my brain back together again if I break it. :nervous:
     
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  2. Snookum96

    Snookum96 Senior Member

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    I have typically gone off of them faster than that. Probably closer to one third depending on what the medication was. However, that was before I got sick.

    Nowadays I think probably taper more slowly because I'm so detrimentally affected by medication changes. I can typically tell if I'm having issues with withdrawal within a couple of days.

    This illness is so unpredictable I would give it longer, plus it would allow your system to try to get used to sleeping without it.

    If I were going off that type of med I would probably give it a week or so just because our my body seems to work so differently than everyone else's.

    The people your psychiatrist is used to working with probably don't have this illness.

    Good luck:)
     
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  3. user9876

    user9876 Senior Member

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    You could try asking a pharmacist they often seem happy to help and even find things out. In the past we have phoned Boots and got advice over the phone from the their pharmacists.
     
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  4. Sasha

    Sasha Fine, thank you

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    Thanks - I don't have a psychiatrist, just a GP, but she says she's had a lot of patients come off this. Not patients with ME, though, presumably...
     
  5. Sasha

    Sasha Fine, thank you

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    I did phone a pharmacy (they were the ones to tell me to expect it to take up to a year with 10% increments).
     
  6. helen1

    helen1 Senior Member

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    I think you'll know by the first night if you're tapering too quickly, as insomnia is a common withdrawal symptom from psych meds. The other one is feeling fluish, that one in a day or two.

    I've had to taper very very slowly due to both symptoms and am currently in month 8 of tapering from trazadone.
     
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  7. Snookum96

    Snookum96 Senior Member

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    oops sorry, I think I said psychiatrist because that's where I get mine☺️
     
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  8. minkeygirl

    minkeygirl But I Look So Good.

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    I think start slow to see you do. I have experience getting off klonopin using the titration method. The first 2 months were easy it was the 2nd 2 that were bad. It has a lot to do, like you said, of getting your brain used to not having it and it getting out of your bloodstream.

    I'm having a problem reading this thread so Im sorry if I missed something. Maybe do a quarter at a time. Hold for a month, Then another quarter. If you need to hold at a level for a while then do that. I wouldn't set up a time table.

    If you want to do the titration method, PM me. It's not that hard and it's easier to control than dry cutting.

    Good luck
     
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  9. Sasha

    Sasha Fine, thank you

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    Sorry you've had problems.

    I agree it's best not to set a timetable, which is why I'm after the rule of thumb - so my main question is: if I reduce my dose by whatever amount, how long should I wait to see if it has caused me problems, before continuing with another dose reduction?

    Thanks but my GP advised against dilution. We didn't go into detail but I think she thought that chemicals in the water might mess up the drug (which surprised me because I swallow the drug with water so there's water sloshing around in my stomach with the drug anyway, but who knows...
     
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  10. Scarecrow

    Scarecrow Revolting Peasant

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    Here's a blog that backs up that 10% per month rule. It may be possible to cut back by as much as 20% depending on withdrawal symptoms.
     
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  11. Sasha

    Sasha Fine, thank you

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    Thanks! Kind of depressing that the list of withdrawal symptoms pretty much covers the entire alphabet.

    But what I find odd is that no-one seems to be addressing this issue of how you know when you can go down a step. I would have thought that there'd be a certain time within which you'd see withdrawal symptoms and if you didn't see them by then, you could assume you weren't going to get any at that dose and could go down another step.
     
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  12. Scarecrow

    Scarecrow Revolting Peasant

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    Worst case scenario! You'd be very unlucky to experience more than a few - not that a few is ok.
    In the absence of advice from someone who actually knows what they are talking about, I'd be quite conservative. It looks like, at best, you're looking at a minimum of 6 months to taper off completely.

    There are two possible strategies that occur to me if you want to try to cut back by 20% a month.

    1) If you were to start at the recommended 10% without any ill effects after 2 weeks you could try a further 5% and stay on that for the rest of the first month, then reduce by a further 10% for 2 weeks, then another 5 or 10% to take you to the two month point.

    That way you could reduce by as much as 20% a month but not all at once.

    2) 5% each week. If you notice any withdrawal symptoms, go back up by 5% and hold it for a week or two.
     
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  13. Sasha

    Sasha Fine, thank you

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    Yes, I think I'm going to have to just be conservative, in the absence of a flash of lightning from somewhere.

    I don't think I'm going to be able to divvy the doses to an accuracy of 5% - I'm most likely going to be fumbling about with powder and paper and refilling capsules and spilling stuff. Waiting for info from the compounding pharmacist. The liquid forum is so expensive I don't think a prescription is justified.
     
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  14. minkeygirl

    minkeygirl But I Look So Good.

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    When I did titration for klonopin I would reduce by a fraction every day. When I started having problems I would hold at that amount until I felt ok, then I would continue.

    You have to understand that no matter what you do you may have some rebound insomnia and other problems. but if you go slow, it'll minimize it.

    With klonopin I had 1 mgs. I crushed 1 mg and put that in 100 ml water. The first day I would draw off 1 ml and take that. Next day 2, etc. If I had problems at a certain level, I would hold at that level. I can't do math so I didn't worry about percentages. It took me 4 months and I had problems for an additional 8 months.

    I forgot those were caps but it would be easy enough to do titration. Experiment with one and see how it does in water. I found a little battery powered blender and would draw off what I needed while it was spinning. That might work. http://www.ebay.com/itm/New-Tornado...ker-Blender-/181571049398?hash=item2a467a57b6
     
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  15. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I think the problem is that drugs are normally prepared with preservatives or carefully adjusted pH to ensure they do not degrade in a bottle. If you add water to something all you need is a few yeast spores and you will have some jolly fermentation in the fridge over a period of days resulting in either no useful drug or something toxic.

    I have no idea about how quickly to withdraw pregabalin. Pharmacists will probably not have any informed opinion beyond what is written in the drug information leaflet. I would tend to trust the GPs judgment or just go as slowly as you can sensibly manage dividing up the medication.
     
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  16. Sasha

    Sasha Fine, thank you

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    Thanks - that's worth knowing because I've seen posts in the past talking about diluting meds as a way of accurately titrating.

    PWME seem often to be oversensitive to normal doses of meds and so for meds that don't lend themselves to cutting, this is a common topic - how to divide doses accurately.

    Thanks - I can manage by dividing up the contents of capsules and re-encapsulating them. I think I'll maybe go two or three times as slow as my GP suggests and see how I get on.
     
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  17. geraldt52

    geraldt52 Senior Member

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    I would think that the safest way, maybe the only safe way, to titrate drugs involves "wasting" the portion you aren't taking...ie: first day dissolve one tablet in 8 ounces of water, drink 7 ounces and throw the rest away...next day dissolve one tablet in 8 ounces of water, drink 6 ounces and throw the rest away...and so on. Just a crude example, but I'm sure you get the idea. With an inexpensive drug this is no big deal. With an expensive drug it doesn't feel right, but I can't imagine doing it any other way. Unless you really understand the chemistry involved I certainly wouldn't be saving the unused dissolved drug for use at some later time.
     
  18. Sasha

    Sasha Fine, thank you

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    Well, I tried a 10% taper using a liquid form of pregabalin and was having bad sleep within a couple of weeks which was making me feel really ill, so had to go back on the full dose. Could have been coincidence, or another possibility is that my body didn't like the stuff that was in the liquid form. I'm going to try some other stuff to improve my sleep so that if withdrawal makes it worse it won't be so bad, and to try to find a way to measure the powder in the capsule accurately and try to subtract 1/20th (approx. 4mg) at a time.

    I tried searching Ebay on "micro measure" and found a "flexible micro scoop" which I don't really understand (£3.99) and a 0.05 ml spoon (1/100th of a teaspoon, used in homoeopathy, £4.99). "Mg scoop" was a good search term - but the smallest scoop seems to be 7mg (£3.25 for 5) and I want about half that size. I'm ordering it and hope to remove that much from the capsule and return half of it to the capsule. Will have to see how practical that is.
     
  19. Calathea

    Calathea Senior Member

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    I was on 3000mg of gabapentin and my GP tapered me off at a speed of 300mg a week. It was horrific, ans it went on for months even after I was completely off it. Do it as slowly as you possibly can and be prepared to be very ill for a few months.
     
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  20. Sasha

    Sasha Fine, thank you

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    I'm sorry you had such a bad time coming off gabapentin. It sounds awful, and I'm prepared to spend a long time coming off pregabalin very slowly indeed. I hope that if I come off it slowly enough, I won't feel it.
     

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