need help from someone with similar experiences with pregabalin tapering

[halperinchen]

Hi, I have been taking 300 mg pregabalin for almost 2 months to try to replace the Oxycodone 5 mg I have been taking in the past 4 years. After 2 months of experimenting, I find out that pregabalin has no benefit relieving my RLS. So now I am trying to taper pregabalin off to eventually eliminate it's use. The first day when I tapered 75 mg off my usual dosage of 300 mg, I have increased symptoms of RLS despite the 5 mg of oxycodone I took. I had to increase the oxycodone dosage to 10 mg. The second day I have the same experience and my rls is even acting up during the day which is very unusual in my case. Do you think this exacerbation of the rls symptoms is related to the decreased dosage of pregabalin I have been taking in the past 2 days? I also need you to instruct me how to taper off pregabalin since I have heard of many horrible withdrawal symptoms. Also do you think my taking pregabalin 300 mg for 2 months will exacerbate my rls? Thanks in advance to all of you.

[SueJohnson]

1) Taking pregabalin 300 mg for 2 months will not exacerbate your rls. 2) If you didn't have any benefit from it, you could have tried increasing it slowly up to as much as 450 mg 4) If you are determined to get off it, I would go back to the 300 mg dose and then decrease it by only 25 mg at a time.

[halperinchen in reply to SueJohnson]

Thanks, Sue, your response gives me a sigh of relief since I have been worrying about it. I will slow down my taper from now on to prevent the withdrawal.

[BAK524]

I would suspect that it is quite possible that reducing the pregabalin led to an increase in symptoms. I would think if you held at 225 mg for some time (how long I don't know, maybe a few weeks?) the increase in symptoms should decrease to their previous level. I can speak to the tapering from my own personal experience. I started on 150mg pregabalin (I should have started at a lower dose, but I was up to 1,200 mg gabapentin, which wasn't working, so I though 150 pregabalin would be OK). The side effects for me have been intolerable. Dizziness (which eased) twitching, tremors, difficulty coordinating my movements, difficulty, initiating a sentence, etc. Perhaps the worse is that it made me agitated, at times anxious, and caused depersonalization/derealization, which has been frightening at times. It's a shame because this medication really worked at controlling my RLS. I waited two months for side effects to subside but they never did. Around the start of the year, I told my neurologist that I wanted to reduce my dose from 150 mg to 75 mg (I was prescribed 75 mg pills). Initially she told me to just go from 150mg to 75mg, but I asked her for 25mg to taper. Unfortunately she only gave me 10 25mg capsules, so tapered down from 150mg to 75 mg over a 10 day period. I found out this was WAY too fast of a taper. I experienced several nights of insomnia, intense anxiety, and constant headaches. It has been about 7 weeks now and the withdrawal symptoms have improved, but not completely. I've been at 75mg and trying to stabilize. (My daytime RLS has increased this past week). My recommendation for tapering off pregabalin is to do it very gradually. It's likely that most people can taper at a moderate rate, but you'll have to figure out what works for you. I think it was Jools who posted her tapering off pregabalin: reduce the dosage by 6.25 mg every two weeks. This is what I plan on doing soon. Obviously pregabalin helps a lot of people, but clearly it is not for everyone.

[halperinchen in reply to BAK524]

Thanks Fatniss for your reply. Pregabalin actually don't relieve my symptoms at all, I also find the side effects intolerable. I have had memory loss and slower with words besides the drowsiness and fatigue. I will definitely slow down my pace of taper to prevent the hellish withdrawal.

[Joolsg]

I tapered extremely slowly. I cut the 25mg pills, poured the powder out, divided it into 4 and reduced by 6.25 mg every 2 weeks. I had read of terrible side effects if the dose was reduced too quickly.It took a long time but I was determined to have a symptom free withdrawal after the hell of withdrawal from Ropinirole.

Because I reduced so slowly, I didn't notice any withdrawal symptoms.

Pregabalin definitely helped make me sleepy/sedated at night but didn't help my RLS in the slightest.

I would go back up to 300mg and take the withdrawal more slowly. As you were on pregabalin for 2 months only, you could reduce a little faster than I did. Perhaps by 25mg a week and monitor.

You are on a very low dose of Oxycodone. 5mg is tiny for RLS.

Why did you add pregabalin? Was the RLS starting up again?

If you were on Dopamine Agonists before Oxycodone, pregabalin and gabapentin may not work at all for you. Dr. Buchfuhrer has noted that they don't seem to help many of us who augmented on Ropinirole or Pramipexole.

Low dose opioids are then the only drugs left that will help us.

I hope you manage to reduce without symptoms and do bear in mind that the 5mg Oxycodone is very low. The average daily dose for RLS is 30mg with many people requiring slightly more.

[halperinchen in reply to Joolsg]

Thanks, Joolsg, you are always contributing to the wellbeing of all the members. The reason I started taking Pregabalin two months ago is to replace the oxycodone I am taking. Reason being Oxycodone has given me insomnia, you know from my past posts. During the process, I found out pregabalin didn't help with my rls, now I am trying to eliminate it's use by tapering it off. Unfortunately, in the past week when I tapered 75 mg off the 300 mg, I have worsening symptoms extending to daytime despite the oxycodne I took. I had to increase oxycodone to 10 mg in order to control my RLS. I am just wondering if the tapering off contributes to the worsening symptoms. Anyway I will slow down my tapering to prevent the horrible withdrawal symptoms thanks for your advice.

[Joolsg in reply to halperinchen]

I'm sorry, I'd forgotten you suffered severe insomnia with Oxycontin.Reduce the pregabalin slowly but remember also that any reduction in Oxycontin will cause RLS so if you are reducing the 5mg you take, that will trigger RLS.

You may have to try methadone or Buprenorphine ( bearing in mind that nausea usually settles after 7-10 days).

As you're under one of the top RLS experts, Dr. Buchfuhrer, email him to ask whether methadone or Buprenorphine would be less likely to cause insomnia.

I hope you find a solution. What about medical cannabis?

That can help with sleep.

[halperinchen in reply to Joolsg]

Hi Jool, I was taking Buprenorphine (Belbuca buccal film) without success, that's why I came back to taking oxycodone again. Methadone makes me like zombie the next day, I can't tolerate it. Fortunately, I found a hemp CBD oil 5000 with 83.4 mg per serving which has been very helpful for my refractory insomnia. that's another reason to taper off the pregabalin which does not help at all with my sleep.

[halperinchen in reply to Joolsg]

HI, Jools, are you taking cbd oil daily? Does cbd oil at higher doses reduce the effectiveness of opioids on RLS? Or anyone on this forum have the experiences of taking cbd with opioid and find the therapeutic effect of opioid being reduced. Thanks in advanced for your reply.

[Joolsg in reply to halperinchen]

I don't take CBD oil. I take full spectrum cannabis oil with 20%THC distilled using CO2.CBD oil has a tiny, tiny amount of THC.

Oxycontin didn't really help my RLS that much.

My medical cannabis doesn't stop the effectiveness of Buprenorphine. I only use my cannabis oil now for spasms as my RLS is totally controlled by Buprenorphine and I don't have opioid induced insomnia.

If you find the CBD hemp oil which helps your insomnia, I'd stick with it.

[WideBody]

I don't think I can offer any advice, just my experience. I have been taking Pregabalin for a couple years. Since starting Dipyridamole, I really want to get off pregabalin. Since I only had 150mg capsules, my first jump was big and I don't recommend it. I dropped to 150mg a night. I had a hard time controlling my temperature. cold sweats, overheating. It took a good week to feel back to normal. I felt so bad, I got a Covid test, (negative).

I got my pregabalin capsules replaced with 50mg and I am currently down to 100mg a night, will very little side effects going from 150mg to 100mg. I plan to do that for a month and then drop to 50mg for a month.

I find my head is so much clearer. I don't quite know how to explain it. Pregablin was a heavy mask. I believe Pregabalin did help in the beginning. I think my brain just got accustomed to it. Good luck getting off. I hope the oxycodone works for you.

[halperinchen in reply to WideBody]

Thanks for your reply WideBody. From your experience with tapering pregabalin I will slow down my pace. By the way, how are you doing with Dipyridamole? I have a prescription for it but been hesitant of taking it. Are you still taking Dipyridamole without taking anything else for your RLS? Thanks again.

[WideBody in reply to halperinchen]

OMG yes, I am taking Dipyridamole and I would not hesitate to get that script filled. I have actually laid in my bed WITHOUT RLS. It has been so long since I had that feeling, I forgot what it was like. Yes it does work. For me I will probably end up at 300mg a night. I take it about 60-90 minutes before bed. My goal is to be 100% off pregabalin and just Dipyridamole.

Please let us know if Dipyridamole works for you. I am sure a lot of people are interested.

[halperinchen in reply to WideBody]

I am so encouraged by your comment, WideBody, I will go to have my prescription filled this afternoon and will try take it tonight. Hope I am as fortunate as you are. I thank you for your response.

[halperinchen in reply to WideBody]

oh, by the way, I forgot to ask you if your RLS is a mild one? WideBody

[WideBody in reply to halperinchen]

Every day, no every single time I tried to rest. Some days worse than others. I have hyper arousal or exaggerated response reflex. I get twitches and jerks just as I try to fall asleep/rest.

Yes of course on a bad nights I get an urge to move. Sometimes I couldn't stay in bed. Once or twice a week. I don't mean to complain, but I think it was bad.

[Munroist]

I took pregabalin for a year, using 75mg tablets, starting at 150 mg a day and working up to 300 mg a day in 75mg steps over a couple of weeks. When increasing the drug the effects were fairly moderate so I assumed the reduction in benefits would be similar and that turned out to be the case. When I decided to come off a year later I reduced in 75 mg steps which I found was fine, but I think it’s important to stay at each new level for a few days if not a week or two so that you can be fully aware of the changes and let yourself get used to the new dose. The key thing is to take it steady as you don’t want to go too fast and then be tempted to go back up again. Increasing is always an option so if things are really uncomfortable you have somewhere to go but as long as you take it slowly and don’t panic it should be fine. It can be unnerving when decreasing and it is probably made worse by the fact that you are on edge and watching for any sort of symptom of which makes you overanxious so my advice is just sit back and let each change settle down before doing the next one.

[Amrob]

I have reduced my dose of pregabalin on two occasions, from a starting dose of 300mg doen to 75mg thereabouts. I didn't notice an increase in RLS/PLMD symptoms.

I did reduce by 25mg per week.

I had some other withdrawal symptoms even at that rate (chills, feeling out of sorts etc). My sleep specialist advised me not to open the capsules (ie not to halve a 25mg capsule and put the contents in water as I was doing) because it means the body absorbs the drug too quickly.

[Amrob]

...Also, you have only been taking pregabalin for two months so I expect you could withdraw at a faster pace than someone on it for years. Generally the dose and length of time on a drug will inform the withdrawal regime.