Pregabalin withdrawal

[jcsphilippines]

Hi. About two months ago my doc put me on Pregabalin to help as I came of Ropinerole. I successfully stopped the latter a while back. I only got up to75 mg of Pregabalin. I thought it such a low dose that I could come off of it. Since I’ve been having some diarrhea as well as edgy feelings of depression. Have others experienced this in Pregabalin withdrawal? How long does it last?

[SueJohnson]

Why do you want to come off it? 75 mg is a low dose. Most people require 100 to 200 mg to control their symptoms. If you really want to come off it, you should do so slowly. I would go back on the 75 mg and after your withdrawal symptoms settle down, I would start withdrawing slowly.

[jcsphilippines in reply to SueJohnson]

I have come off of Ropinerole in the past. Why would I want to stay on Pregabalin when it has the same tendency to have increase dosage over time?

[SueJohnson in reply to jcsphilippines]

It is not the same as ropinirole having to increase the dosage over time. Once you find the dose that works for you, you do not have to increase it. In the early days of using it, i.e. say 8 months, you might have to increase it although that is fairly rare as your body adjusts to it, or if you start a new medicine or expose yourself to a trigger.

[Butterflysun1 in reply to SueJohnson]

In my experience the effect of Pregabalin did wear off and the dose needed to be increased to be effective. That was in the very early days of Pregabalin when it was not well known that it helped. This was a gradual effect that occurred over a couple of years. I think others have now found the same. It was great while it lasted & until the side effects of increased dose made increasing further not viable & it was hard to come off. I call it augmentation by another name, whatever the mechanism. I had years of experience of Pregabalin starting around 2006/7

[SueJohnson in reply to Butterflysun1]

Everybody is different, but this is not the usual case.

[Butterflysun1 in reply to SueJohnson]

I think it’s possible it will be more usual over time once more folk have been on Pregabalin for longer. Time will tell of course but I report this as I was one of the first people to take Pregabalin for RLS - as found the effect by chance & personally phoned the drug co to find out if they were aware of the effect because at first it was SO effective & I hoped others might get the chance for this miracle cure. They said they had received some other anecdotes so were planning a trial. So I was also one of the first to experience the wearing off of the effect & the difficulty of coming off it.I think it’s important to report such effects so others are aware of what can happen & also be aware of whar happens if you increase the dose.

No one knew about DA augmentation at first which is why so many have suffered from it

[SueJohnson]

If you do it slowly you won't have any withdrawal symptoms at all.

[BAK524]

Hi. I am currently going through a pregabalin withdrawal. I started on 150mg at the start of last November. After two months severe side effects never went away so I dropped the dose to 75mg over a 10 day period. I had horrible side effects-intense insomnia, anxiety, sweating, headaches, fatigue. I took another 5 weeks and I have tapered slowly to 50 mg, and have still had many unpleasant withdrawal symptoms, mostly trouble sleeping and anxiety. If you research online, there are many forums that discuss the difficulty for some to get off this medication. The symptoms you are experiencing are typical. If you can get 25 mg caps, that should help. I've been opening each cap, dumping the contents on a mirror, and dividing the powder into 4 piles, reducing by 6.25 mg every week or two. All recommendations are to taper gradually. Good luck.

[Davidbaldbloke]

I ve recently come off for pregabalin and now just experiencing lots of insomnia and not great restless legs. Makes me feel like I should be going back on it again but so hard to know. Any tablets aren’t best solution as always some down sides. Such a hard decision! I hate RL so much. 3 hours sleep is pretty normal for me and that’s in 3 one bits!

[SueJohnson in reply to Davidbaldbloke]

You said previously that 300 mg worked.

[Davidbaldbloke in reply to SueJohnson]

I think it did a fair time back but I keep stats of every night and the last 35 nights on virtually no pregabalin was only a tiny tiny bit worse than when I was on a reasonably high dose, up to 300mg. So I concluded that if it seems to have worn off working now I may as well try and wean off it. My rare GP phone call I had agreed I may as well try to reduce very slowly which I have done. Of course we are all different and I’m constantly guessing and trying different doses but currently taking nothing now.

[SueJohnson in reply to Davidbaldbloke]

You may need to go on a low dose opioid.

[Davidbaldbloke in reply to SueJohnson]

I’m listening. Are they not great for you/me and do their effects wear off and you have to increase dose after a while. I’m sure you know way more than normal GP’s.

[SueJohnson in reply to Davidbaldbloke]

I'm not really that knowledgeable about opioids as I have been lucky and not had to take them. Others on this forum are though. I just know that when all else fails a low dose opioid is often the answer.

[Munroist]

I came off pregabalin without any issues. I did notice a return of certain nerve sensations and occasional anxiety but that’s to be expected as the drug is intended to relive these things. I took it slowly and got used to each new lower dose before dropping it again and did it over a period of a couple of months. As other have said it seems to be variable, some have more issues than others.

[Whymelord in reply to Munroist]

Hi Munroist, I've recently been put on Pregablin, been on them about two weeks and feel at last I'm getting some relief. I'm just curious as to why your going off them and are you taking something else or do you not need anything now.

[Munroist in reply to Whymelord]

Hi, I originally took pregabalin for nerve pain and sensations I was getting after a spine/disc issue. At that point I hadn't really realised I had RLS although I knew my sleep was getting more interrupted. I was getting lot of strange, worrying and sometimes painful sensations and the pregabalin damped these down and allowed me to relax a bit, do more physically and I realised that actually my back could take more than I thought and it was slowly healing. The pregabalin was generally fine but it made me feel slightly"dull", I had a slight issue finding words and initiating speech in busy situations and it felt a little like I was slightly drunk most of the time so as soon as as I realised things were getting better I stopped it. On top of that I don't like taking drugs unless I absolutely have to. I'm not sure whether it made much difference to my RLS, looking back at notes I made I can see most nights I was waking once whereas now it's normally at least twice if not more soo maybe it was helping. When I came off the pregabalin I was also exercising a lot more which I know sets off the RLS, so while there was an increase in restlessness and waking I can't tell whether it was more exercise or stopping pregabalin or both. At the moment I want to try iron therapy/infusions before taking any other drugs but I accept I made have to go back on it at some point.

[Whymelord in reply to Munroist]

Hi Munroist,it's really frustrating all these different meds.i may sound ignorant here but I just read an article where its says Pregablin is a class c drug.if only I could do without these blasted things but I'm scared to go off them cause my rls is horrendous at times,good luck with the iron therapy/infusions.let us know if it eases rls.

[Butterflysun1]

Hi, thank you for posting & asking your question & for the replies so far. This is how we are all going to learn & imcrease our knowledge. I’m assuming you are coming off it due to side effects you don’t/can’t live with & maybe now its lack of effectiveness at your current dose, but correct me if I’m wrong.So, that’s what happened to me. I took it many years ago before it was classified as a class C drug (UK).

I kept increasing the dose when it stopped working from 50mg & eventually got to 150mg but couldn’t tolerate it. Some of us metabolise it differently obviously & a little goes a long way so I’d always start low & those of us who have come off it have had different effects but I think most have had to go very slowly.

I hadn’t heard of diarrhoea as a withdrawal effect but have just looked it up & see it is listed. If that doesn’t settle though I would advise you see a dr as diarrhoea can have other causes.

So, my withdrawal experience from 150mg was as follows. The side effects I had had ( poor balance & marked sudden hunger especially ) went away but with each dose reduction, although the 150mg was no longer controlling my RLS I had a worse flare up with each reduction.

I just had to play it by ear as we are all different. I had 25mg tabs & would strongly recommend getting them as anything faster was really hard to tolerate. Each reduction took about a couple of weeks. If anything was too intolerable I went up to the dose that predated this & tried again in due course.

It got harder & slower at the very lowest doses.

Once when I got desperate I asked my GP if I could retry it. I started at 75mg. It didn’t have any beneficial effect but the side effects kicked in & I had to go through the withdrawal again.

Like one of your responders said, no drug seems to be ideal & I constantly hope for a breakthrough.

I think we can all contribute to this by eg reporting that coffee helps us when it was reported to be detrimental as every report might lead to the breakthrough we all crave so thank you

[coldfeet7]

I took ONE 50mg Pregabalin and less than 24 hours later I had a very obvious tremor/shaking in my right hand that would come and go. It was really troubling.

Dr. researched it and said it was not unheard of as a side effect. So I guess medicine continues to be a "let's try this and see" tech. Very frustrating.

[SueJohnson in reply to coldfeet7]

Often side effects will lessen or go away completely after a few weeks so unless you really can't live with it, I would give it a little time.

[ircam2112]

I took Pregabalin for 1.5 years at 275mg at bedtime. It was very effective in treating my PLMD/RLS symptoms initially but at about 1 year I began to become tolerant to it, which is consistent with the attachment. I tapered to 150mg for 2 weeks, then 75mg for 2 weeks. The primary withdrawal symptom I had was extreme fatigue. I was also taking Clonazepam and Oxycodone at the same time so that probably helped with any anxiety symptoms.

When I dropped from 150mg to 75mg, I had a significant increase in PLMD symptoms but they returned to normal after about 5-6 days.

Length of effectiveness - agents for RLS

[Kashka23]

You need to come of Pregabalin very. Slowly with the help of a doctor. These are side effects from withdrawal. I know. Coming off it quickly sent me into a horrific bipolar episode I hadn’t experienced in 13 years. It’s a highly addictive drug and is misused on the streets. Please please get help with this.