Hello everyone.
I appeal to those who take pregabalin or gabapentin from RLS. As you know, if these drugs are taken for a long time, then tolerance occurs, that is, they stop working. Who has experienced this? What can I do about it? How long have you been taking these drugs?
I have taken pregabalin for approx seven years. No tolerance issues and it works in respect to reducing limb movement.
Good morning. My RLS was pretty much under control until my doctor reduced my alprazolam to just .125 mg daily and then prescribed sertraline. RLS came back with a vengeance. Told my doctor about that and he then gave me a RX for gabapentin; just 100mg two hours before bedtime. Reluctant to take any gabapentin because of possible side effects but I'm giving it a try. Last night was better. Some RLS but was able to finally get some sleep. Understand it takes a while to take effect so I'll gamble on continuing and see what happens. I'm also taking a bit of iron and magnesium and nibbling on a few hemp gummies. With everything else going on in the world I believe that RLS has been given a back seat.
Hi,Interesting, I have read that Setraline can have an effect on RLS.
My Dr. has prescribed it for me but I have resisted taking it because of this. I didsay to him that I had read about Setraline having a negative effect on RLS but it fell on deaf ears! Now I don’t know whether to take it or not. Do you know if it has an immediate effect on RLS or if it’s after a period of time?
I just start taking now three weeks ago 3 tablets 25 mg each I am still taking pain killers with this
I’ve been taking Pregabalin for about 4 years 150mg at about 8pm. It works just great for about 80% of the time. (I never expect 100% coverage). I keep my dose as low as possible so I know I have some leeway if it ever stops being so effective.
I think we have to assume that a certain tolerance for any drug we take will happen over a period of time (this is very different to augmentation) and that a drug holiday may be needed to reset our receptors. That happened to me with Tramadol, I took a break and tried Pregabalin and as yet have suffered no tolerance or any need to return to Tramadol.
Pam
Hi PamInteresting to read your experience.
After working thru augmentation from Ropinirole I was trying to obtain support from a doctor (any doctor who can confess to knowing about rls!!!)
I finally had a very sincere chat with a doctor from Guys Sleeping clinic. I told him I was taking 100mg of Tramadol from 14th Jan this year and since then I have experienced 8 hours sleep each night. Tried to stop one evening and had no sleep all night - terrible. The doc did say it would be useful to take a weeks holiday every now & then and recommended codeine and another drug zof.....?
He did say my nightly 100mg of Tramadol was well below the level regarded as 'addictive (400mg)
It is a big problem finding a Dr. who has a good knowledge of RLS. Neither my GP nor the Neurologist I went to, are very knowledgeable. I have given up completely on the Neurologist and won’t bother to mention it again to my GP. He has prescribed Setraline when I said I had read it had a bad effect on RLS and when I told him what helps my RLS on a previous (thinking the info may help another of his patients) he looked at me as if I was mad! He also didn’t want to give me a blood test to check my electrolyte balance. I think we have to be our own Dr.s! Some people on here (like Minerva) are so knowledgeable and probably know more about RLS than most Dr.s!
I am sorry but I can't help Sahhara. I did request it from my go but she prescribed Clonazepam to help me get off Ropinerole. It's working v well plus an iron infusion.Hope you are able to get some help from someone else.
Hi, I was originally talking Pregabalin for sciatica problems, as well as Tramadol, totally unaware they were used in the treatment of RLS. Prior to that my RLS wasn’t severe enough for me to seek medication. It was another matter, however, when I wanted to come off these meds after spinal surgery, as my RLS became unbearable, so I stayed on them for longer. Probably around 3 years for Tramadol and 2 years for Pregabalin. After a horrific 8 months following weaning of both drugs, where my RLS symptoms went through the roof and spread to other areas of my body, I gave up and saw my GP and went back on 2 x 50 mg of Pregabalin a day. For a few months, possibly less, everything was great. Then they stopped working as well and I went back to RLS every night plus the other areas it had spread to, and I’m worried that it’s still spreading. Unfortunately the lockdown had occurred during all this so I’ve not gone back to my GP, I’ve just carried in with the assumption that without Pregabalin it might well be even worse and, even if I did increase the dose, my tolerance might also increase very quickly.
So, sorry for the long post. I’d say Pregabalin isn’t working for me at the level I’m currently taking it and that tolerance built up very quickly. That might or might not be due to the history I’ve set out above but, as I said, I had about 8 months meds free before going back on it, when my RLS was hell and so was insomnia.
I took Pregabalin for several years. At first it was very effective & I would say a godsend, then I needed increasing doses whose effect also wore off. I never got beyond 150mg because of side effects but the bottom line is yes, I developed tolerance. It was also hard to come off as symptoms got worse with each dose reduction despite doing this very slowly ( few weeks )
Hi, I have been taking Pregabalin for about two years now. It still works well for me at a dose of 275mg at night. The only side effects are weight gain of 14lb with swollen ankles - not very attractive but how can that be judged against mostly restful nights? I am 76 years old and have had RLS for at least 22 years. I tried Ropinirole until it augmented and before that I generally managed to just about cope, getting up and down each night, not realising what was wrong. It was this forum and gaining more information generally myself that lead to my present situation. That, and luckily having mostly sympathetic and helpful GP s Good luck to you for your future journey whatever you decide to do.
I've been taking gabapentin for PLMD for a year. It's mostly effective at stopping the leg twitching and allowing me to sleep. I had been taking up to 3 mg of ropinerol but stopped because I was clearly augmenting. Interestingly, I noticed no effects (withdrawal) after abruptly stopping it. I suspect this is because I switched to gabapentin at the same time. That said the gabapentin is becoming less effective with time and I've increased the dose from 900 mg (all doses are per day) to 1500 mg and even 1800 mg (this is the max recommended). I've also added 0.5 mg of ropinerol. My sleep doc thinks this low dose will help (it does) and avoid augmentation. I don't know if I need more meds because I am developing a tolerance or my PLMD is getting worse. I suspect that it is getting worse and this really worries me. I'm still looking for a better drug (or drugs) and a more optimum mix.
Please note that nearly everyone will have a different experience with the medications.
I've been taking 900mg of gabapentin for over 7 years, occasionally increasing it to 1200mg if I feel I need it. I wake up with r l s and space out the tablets throughout the day, usually 1 on waking, the 2nd at 5.30 pm and the last one at bedtime. If I wake during the night, I just take another,So far it's been working well at controlling it.
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