Those of you who have been responding to my posts about going cold turkey off Ropinerole know I am hopefully at the end of my withdrawal period. Seven days today since I stopped taking 2 mg of Ropinerole after titrating down from 12 mg since January.
I saw my GP today and we were trying to decide which direction I should go in now with a different medication. I am feeling much better with no more augmentation only some minor leg twitching and a kind of sensation in one leg then the other that feels like my circulation is being cut off. It's kind of weird. Has me and my doctor wondering if it's peripheral neuropathy from a botched foot operation over 10 years ago. Since Gabapentin combined with tramadol, plus iron bisglycinate doesn't seem quite strong enough to prevent the onset of these uncomfortable leg sensations every afternoon and evening ńow, my GP thinks Lyrica might be a better medication for me once I'm completely past this Ropinerole withdrawal.
My question for those of you who have been on Lyrica is: What has your experience been with it? What are the positives about this medication? Does it actually control RLS? Any draw backs? Does it cause augmentationh? Is this a viable choice for me given what some of you know about my past experience? I'd really appreciate any thoughts any of you have about Lyrica. Thank you.
Bganim
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Yes, I will start with the lowest possible dose, probably combine the lyric with a smaller dose of Gabapentin. Hopefully I'll be able to get the tramadol out of the mix soon.
Sorry you are having probs ,like us all it's hard to find the right meds if any for this pest rls. I went from Gabapentin to Pregablin I am now on pre with tramodol and the patch which lots of us get on well with,I have lots of good nights but I still get some of the other but not so bad. Good luck x
Hi Bganim, the patch is rotigotine or "neupro" & it is a dopamine agonist (DA). As you augmented on a DA you shouldn't consider the patch for at least 6 Months to avoid further augmentation. It has the least incidence of augmentation though.
I'm on oxycontin and lyrica ( but the cheaper generic variety- pregabalin). It's stopped the panic attacks due to the oxy and it definitely works as a sedative to aid sleep.
I didn't think it was helping much with RLS but when I reduced the dose slowly by 25 mg every few days, the RLS played up again. Clearly it does help.
The only side effect I have is hair loss, but I had that on gabapentin as well.I've been on it for about 6 months and haven't experienced augmentation. I don't think it causes augmentation but did read a study mentioning it, although no one on this site has ever talked about augmentation on either gabapentin or pregabalin.
Two meds at lower doses are often more effective than one med at a higher dose.
Doesn't that apply to two different TYPES of meds?! Gabapentin and pregabalin/lyrica are two forms of the same thing.... So adding one to the other is not likely to help
Sorry if I wasn't clear Lotte. Yes, two different types of med at low doses like oxy ( opioid) & either gabapentin OR pregabalin. They are both alpha 2 delta ligands but are absorbed differently & pregabalin is slightly more expensive than gabapentin but has fewer side effects.
Interesting. May I ask what your dosage of gabapentin is, how often do you take it in one day/night and what times? What were your RLS symptoms prior to taking gabapentin and what di you take then to help you deal with it? Do you also take other meds,like tamadol to deal with your RLS?
I take 600 mg at 9:00 pm. The RLS specialist at John Hopkins said to take it a few hours before bed and don't get in bed til you are really sleepy; not just really tired.
My symptoms were feeling like worms were crawling in my legs (only one leg at a time randomly) and I'd have to jerkily kick my leg. Walking helped but I was walking til 4:00 in the morning. My ferritin level was 70 at the time and then I had an iron infusion. I do not take any other medicines. My RLS is totally under control with the gabapentin.
I have not heard of taking Ropinerole being used to treat RLS before. Isn't that the name of the 'date drug'?
I was taking Gabba 900mgs/day (prescried by a Neurologist) and because (at the time) I was taking so much medication I decided to eleminate something, so I weaned myself off the Gabba over a six week period and all was well and good for about another six weeks and then the pain returned so my doctor prescribed Lyrica (albeit a small dose) and the pain subsided.
And then during a stint in hospital (for a different ailment) the 'powers-to-be', decided thru their ignorance, to stuff around with my meds taking me off the Lyrica. That was approximately six months ago and to be quite honest, i have not suffered any significant consequence.
They also cut my sleeper dosage (of Temaze) in half resulting in (obviously no sleep) and eventually nausea and then vomiting.
I find it to be so frustrating and somewhat degrading that, in this day and age, especially when it is so widely documented, that RLS is suffered by approximately 10-15% of the world's population, that there are still so many clinicians who are.so totally clueless regarding this disease.
I have recently moved to a very small country town in South West Queensland in Australia, and (altho I have only been here for three months) it has become quite obvious that I will have to move back to the city and/or the coast as the doctors here make me crawl thru hoops when it becomes time to request another sleeper script.
I will sign off for the night with the image of you hopelessly slipping ropinerole into the drinks of lovely ladies - maybe in the horse-shoe bar of the Shelbourne hotel or some other swanky Dublin establishment.
Hi Bganim, first of all please accept my whole-hearted congratulations on getting off the ropinerole. You have shown immense resilience and resolution.
Regarding you questions, I assume that your doctor intends that you replace the Gabapentin you currently take with Pregabalin (Lyrica) as taking the two drugs would not be usual (as LotteM points out, they are two forms of the same thing). My understanding is that neither Gabapentin, nor Pregabalin is associated with augmentation. I have heard of the study referred to but nothing I have seen anywhere else has even hinted at augmentation being experienced on these drugs. It does seem that some people get better relief from one or the other so it is definitely worth trying Pregabalin if Gabapentin is not helping enough.
My experience with Lyrica has been very similar to Jules, I take it as a sleep aid and I did not think that it did much for the RLS but when I reduce it sometimes I find that symptoms return so I think it can provide some assistance even at low doses. However, as a monotherapy it did practically nothing for my RLS and although there are a few people who use it on its own, I notice that mostly people tend to take it in conjunction with other drugs.
I am interested to read that Jules experienced hair loss as I notice my own hair becoming thinner and had started to wonder ... I also find that at higher doses (over 100mg - and people do take up to and well over 1,000 mg so this is not particularly high), I felt very sleepy during the daytime and also had unusual, unpleasant tingling sensations in my limbs. I think it also made me feel a bit down in the dumps and it can be associated with suicide ideation. Having said that, I was having a terrible time with RLS when I was on Lyrica as a monotherapy and nothing in my life to date has been so associated with suicide ideation for me as really bad RLS so most likely I am blaming Lyrica unfairly for my feeling a bit depressed at the time!
One other widely appreciated side effect is that it stimulates the appetite something rotten and I piled on the pounds when on a higher dose. I sound like I'm giving it a very bad press - many people take it without experiencing any problems. At the dose I take now, it works for what I want and I don't get any of these side effects (apart from the hair which of course may be totally unrelated to Lyrica).
Jules is quite correct (when is she not?) in advising that neupro is not a good option for you in the near future. With careful management and the passage of time, some sufferers do manage to resume dopamine agonists after augmentation however so it might be something you could look at in a few months.
Bganin I switched from Ropinerol to Lyrica and Tramadol. 100mg of each. As long as I remember to take it 3 to 4 hours before bedtime it works very well. I would not get hung up on getting off of Tramadol. I was taking 2 to 3 100mg doses a day when I was having back problems some years ago. I was taking that amount for months with no problems coming off it when the back problem got sorted. I know it is just another med that I will need to take indefinitely just like the Lyrica.
For me it was some weeks before it kicked in properly and to start I was taking 150mg of Lyrica but cut it down to 100mg because It was making my legs feel like jelly.
I posted that up on this site and another member said she had had the same problem but that it disappeared when she reduced the amount to 100mg. I reduced mine and the sensations stopped within 48 hours and have not returned. I also tried cutting the Tramadol down to 50mg but although it was ok some nights. i still had problems others.
I feel now that 100mg of each is just right for me. It has taken some months to get the balance just right but I think now I am in a good place. The only side effect I have had from the Lyrica is that Jelly leg feeling, nothing else. Apart from that other member I am not aware of anyone else on here reporting that side effect and as I said it stopped as soon as I reduced the amount.
I think my GP said the maximum dose he would prescribe of Lyrica was 300mg, so 3 times the amount I am taking. Some people on here have reported weight gain, this has not happened to me and I have been taking it for about 7 months now so would have thought this would have happened if it was going to. Maybe this is more of a problem for those taking higher doses.
You have done so well to get off 12 mg of Ropinerol. I was unaware anyone with RLS was ever prescribed such an incredibly high dose. It must have been hell getting off it.
I hope you find Lyrica works for you but I do think you will need to take Tramadol with it or another opiate. From what I have read on here it rarely works on its own and It seems it is better to have lower doses of 2 or more drugs than a higher dose of 1.
Thank you Mantel, that was such an informative and helpful post. I'm beginning to think twice before I agree to Lyrica. Coincidentally I had the first day since I stopped Ropinerole 8 days ago in which I had almost no RLS or withdrawal symptoms. I felt a little heaviness in one lower leg for about 20 minutes while watching tv so just got up took my Gabapentin, tramadol and iron w/oj walked around for 20 minutes and it was gone. Weird though this heavy sensation I've been getting the last 3 days in place of that tingling pulsating feeling was more like tha circulation being cut off in my lower leg from the ankle up. Fell like what I imagine peripheral neuropathy must feel like. Maybe that's what have had triggering my RLS, hmm.
Anyway, thank you so much for taking the time to write that thoughtful post.
Bganim why do you take all three things at one time? Isn't it hard to tell which works and which is not necessary? Never heard of gabapentin or tramadol. Or did your doctor recommend you do that? My brother in law has mild peripheral neuropathy and he used a supplement called Metanx though kind of expensive. He read the ingredients and now just buys the ingredients separately and supposedly saves money. I think the three main ingredients are folate, b12 and b6. Even buying the best and most expensive form of these ingredients he claims is still cheaper and just as effective. Congrats on stopping the drug and the RLS. I too use iron and lucky for me it's enough. I'm hoping to be like Dicarlson who was able to stop the iron after a while without a return of the RLS.
I've been on Gabapentin and tramadol for many years for nerve and arthritis damage and pain from a botched foot operation. The Clonidine was to help me through this withdrawal discomfort while I am going cold turkey off Ropinerole.
I have restless body (not just legs). My PCP had me on Mirapex until I eventually maxed out on dosage. He decided to change me to Lyrica, and after about 2 weeks, I began to notice odd things. I couldn't remember small words, and would spend the majority of my conversations describing what I was trying to say because I couldn't remember the word. In fact, there were lots of basic things I couldnt remember...like, if I had showered that day, if I had dropped my kids off at school, whether or not I was supposed to go to work, etc. I noticed that I would literally walk into walls and misjudged doorways constantly. It was like my body was unable to walk a straight line or turn correctly. My husband began to notice shortly after the symptoms started, and he ended up taking me off Lyrica before I could get in to see my PCP. It. Was. Horrible!!! I was put back on the max dose of Mirapex with 400mg Gabapentin, and that has worked really well until recently. I now have good nights and bad nights, and am currently looking for something to switch to. I have read a lot of good things about the Neupro patch on here, and am considering that as a suggestion at my next appointment.
Hi Kazamie, sounds like you have augmentation on mirapex. All over body RLS is common during augmentation. Have a look at the video on the main page of RLS UK website.
Switching to Neuro ( another dopamine agonists) would be better after a few months off mirapex or you are more likely to have same problems.
I am on pregabilin 50 mg morning and 50 mg in the evening .This was prescribed before I developed RLS as I have an inoperable problem in my 3/4 vertebrae-am slowly losing the feeling in mainly my left hand and getting worse in the right. I am now on 1mg ropinerole for the RLS . These seem to work most days but sometimes I do have trouble getting to sleep and the only thing to do is get up and walk around until I am really tired then I can usually nod off.
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