Lyrica

[shinderlider]

I’m gathering information prior to an upcoming visit with my PCP because I am fairly confident that I am experiencing augmentation with my ropinirole. Yesterday I had a telehealth visit with my endocrinologist and asked him to share his thoughts on lyrica. I am an insulin dependent diabetic with mild neuropathy in my feet.

He is not a fan. He said the brain fog can be pretty “paralyzing” for some people. He also said that coming off it (if it is not effective) can be very difficult.

I’ve read quite a lot on the boards about lyrica but am interested if anyone has had the experience of using lyrica then having to withdraw from it.

Thanks in advance.

[Polar Bear]

I just want to let you know that I use lyrica successfully for neuropathy in feet and lower legs with the benefit of also helping my rls.
However I have never had to withdraw from it and hope I never have to.

[Margaret122maryL]

I am on Lyrica 150 mg as well as Tramadol 50 mg and Xanax 0.5 mg. I do feel foggy, fatigued and depressed at times but who’s to say what causes those symptoms since I am also on letrozole for breast cancer—which is known to cause fog, fatigue and depression. What I can say is that the RLS after augmentation was worse than any of those symptoms so I take what I can get, which is a good night’s sleep with some frequency.
By the way—I recently read a limited study that implicates letrozole in worsening RLS.

[Rustsmith]

50mg of Tramadol is a small dose (I used to take 200mg and 400 is the max). Also, if you read the literature that comes with your tramadol, you will see warnings about not taking it at the same time that you are taking an anti-depressant. That is because tramadol is also an SNRI anti-depressant that is very similar in chemical structure to Effexor. I learned this when I was forced to stop taking it abruptly, which is something that should never be done with anti-depressants. I ended up suffering with SNRI Withdrawal Syndrome for many months.

[Lissa496]

I was put on pregabalin, not Lyrica, but its cousin, 75 mg - 3 x per day then, as it was not helping my RLS and was put on an additional 200 mgs twice a day, and I foudn it knocked me out, I was having problems with my memory, falling asleep at work. I should have told my doctor right away to take me off, but they said to give it time, it only got worse. By December I was so depressed and was not getting any work done, I knew I had to start to take myself off this medication, and started in January. I am now down to two 75 mgs a day.
My body craves this medication, when I don't take the morning 75 mg I know it, my body misses it, and I have found I take the next 75 mg at noon instead of 2 pm because my body needs the pregabalin. I am also on an opioid and that is helping too, but it is a slow process getting off this medication. I see my neurologist in 4 weeks and I am going to see if I can get some 25 mgs so I can decrease to 50 mgs and then to 25 mgs. So my plan is to stay at the 75 mgs twice a day until I can get the 25 mgs.

This seems to be a medication that your body either loves it or hates it, If your body reacts early to it badly then I would suggest getting off of it sooner than later, I wish I had listened to my body earlier. If you don't have problems with it then you will be one of the lucky ones and can stay on it. Good luck!

[shinderlider]

Thanks everyone.

Polar Bear, were you on a different medication for RLS before Lyrica? If so, how was the transition?

Margaret, what were you on prior to Lyrica? How soon did the Lyrica give you relief from RLS?

Lissa, it sounds like your experience with pregabalin has not been good. Were you on something else before? What will you be taking instead?

[Polar Bear]

I was originally only on ropinerole and was up to 5 mg daily and augmented but the augmentation wasn't recognised. Codeine phosphate was added but wasn't enough to be successful.
Eventually as I very slowly tapered off the ropinerole the codeine phosphate was changed to cocodamol and pregabalin was added. The pregabalin was actually prescribed for neuropathy but had the benefit of helping my rls. I remain on the max daily dose of cocodamol and pregabalin with pretty good relief.

[shinderlider]

Polar Bear, how long did it take you to come off the ropinirole? At what point was the pregabalin added?

[Polar Bear]

It took me 10 months. I had already just started the pregabalin for the neuropathy at 100mg morning and evening.
Tapering so slowly was quite painless considering I was coming down from 5mg. Most people taper very much more quickly.but I had already tried twice previously and failed. As I tapered the pregabalin was increased.

[Lissa496]

Hi Sue, I was on all the DA's and augmented. I was successfully put on Tramadol but I topped out at 300 mgs and my legs started to act up after 15 years. I tried going back on the DA's not knowing what I know now about them now from this site, but that did not work and my neurologist did not know either that you shouldn't go above a certain amount, I was at the top of each amount allowed for the medicine type, not for RLS! My last was the patch and I ended up at 8mg and had to come off that one and that is when I went on pregabalin. I started at 25 mg and it did not help, so my neurologist slowly brought me up 75 mg three times a day, but that did not help, so she added 100mgs first thing in the morning, which put me right back in bed and 100mgs at bedtime, which put me to bed. I should have stopped when it was not working but at that time nothing was working and I was looking for anything. When that did not work, my neurologist sent me to a Pain Management Center in Feb as she said she couldn't do anything for me and would not subscribe opioids and said she was tired of subscribing pain meds to me.

Pain Management tried methadone but I had a bad reaction to methadone. So they said we should try a drug holiday from tramadol. I mentioned I should stop taking the pregabalin, and they asked if it was helping, I said a little, but I did not like the effects, and they are good with me stopping.

I have been on a holiday for 6 weeks from my Tramadol, just went back on it yesterday as I had a histamine reaction from the hydrocodone er. I was supposed to stay on the hydros much longer but with the histamine reaction, they had to take me off. I was able to sleep for the first time last night since, wow, November of last year on 50 mg at 5 pm of tram and then another 50 mg at 10 pm. Slept like a baby through the night! I have not had tram or pregabalin this morning. Will have to take something later but will start with the tram first as I am hoping this will take the place of the pregabalin if it works this well again.

I see a new neurologist, who I found on the RLS.org site, and will be asking for an iron transfusion, as my iron is around 127 but not the 300 that is recommended. I am hoping my hematologist will work with her and if the transfusion goes as planned, maybe my rls will not be so bad. My next plan, if the iron does not work out, is to try Dypyridramole, found on this site, and then also found here, there is the herbal supplement from Chinese medicine which is my last idea is Dangguijakyak-san and Shihogyeji-tan.

Hope this helps!
Lissa

[jul2873]

Oh Lissa, I am so sorry you are going through this!

I was put on Lyrica--my primary care doc's effort to get me off of kratom--and I took about 100 mg. for a year. But I still needed the kratom, and so tapered off the Lyrica. Coming off was not hard, and I felt much better off of it. My primary care was upset I had tapered off it, and since I was still on the kratom, told me I had an "addictive" personality. I don't drink, I've never smoked, I used medical marijuana for about a year for getting to sleep, but am off that now too. She kept saying to me, "Well, do you drink?" No "Do you smoke?" No. "I bet you drink a lot of diet coke.? No, none. "But I bet you eat chocolate!" Well, she had me there. But since I wouldn't go back on the Lyrica she decided I had an addictive personality and only took the kratom because I was addicted to it. My daughter said, "You can't go back to her." And I agreed and got a great, new primary care. And I'll never take Lyrica again. I feel much better off of it. My daughter said the other day, "You seem much happier now. What's happening?" No lyrica was what was happening. So I'm not a fan of it.

[Lissa496]

Oh Lissa, I am so sorry you are going through this!

I was put on Lyrica--my primary care doc's effort to get me off of kratom--and I took about 100 mg. for a year. But I still needed the kratom, and so tapered off the Lyrica. Coming off was not hard, and I felt much better off of it. My primary care was upset I had tapered off it, and since I was still on the kratom, told me I had an "addictive" personality. I don't drink, I've never smoked, I used medical marijuana for about a year for getting to sleep, but am off that now too. She kept saying to me, "Well, do you drink?" No "Do you smoke?" No. "I bet you drink a lot of diet coke.? No, none. "But I bet you eat chocolate!" Well, she had me there. But since I wouldn't go back on the Lyrica she decided I had an addictive personality and only took the kratom because I was addicted to it. My daughter said, "You can't go back to her." And I agreed and got a great, new primary care. And I'll never take Lyrica again. I feel much better off of it. My daughter said the other day, "You seem much happier now. What's happening?" No lyrica was what was happening. So I'm not a fan of it.

I would rather be on kratom than on Lyrica too. I use kratom on my bad days too. I don't drink or smoke either. I try to eat healthily too, don't like chocolate, so that helps. I may be dependent on tramadol but it is for rls, not for pleasure, and the same for kratom. I have the same package of 30 pills I purchased back in February of this year that tells you how often I have taken it and it is Mid-May. Not like I take it every day. I will not take any type of pregabalin/Lyrica again due to the side effects and what it took to get off. I don't know what lies ahead for me but I have hope.