I am into the sixth week of augmentation with pramipexole and finding the going tough
Lack of sleep etc I have been using zopiclone 7.5mg but no longer effective.
I have been prescribed Gabapentin by my gp but no instructions how to use apart from one per day 100mg I'm reluctant to use but now getting desperate I do not want to get hooked on any more medication if I can help it any advice would be welcome lack of sleep is effecting my judgement
Do you mean that you are weaning from pramipexole?
I did the same and now am sleeping well with 200mg gabapentin in the evening..started with 100mg . It takes a few weeks to get going. Also make sure you work on getting ferritin levels over 100.
Good luck!
See the replies to your post 6 days ago.
Start the Gabapentin at night. Take 100mg for 2/3 nights then 200mg for 2/3 nights.
It takes 3 weeks to become effective and will not make any difference to your RLS while you are withdrawing from pramipexole.
When will you be taking your last dose of pramipexole?
As I advised before, you will probably need tramadol or OxyContin to help during the withdrawal. The RLS will start to settle 10/14 days after last dose of pramipexole and hopefully the Gabapentin will then help.
You can take up to 900mg Gabapentin for RLS.
Sorry to hear you're struggling.
I find it a bit scary, I suffer augmentation and have done for some years I'd say, but didn't really know it existed. I was aware that the Pramipexole was minimally effective, but knew I couldn't increase the dose. Luckily! As being unaware that increasing the dose would make it worse. Scary because when I accidentally miss a dose it's a nightmare.
Well, a nightmare whilst awake that is.
So the thought that the way to deal with it is to stop the Pramipexole is worrying, because I recall what it was like before I first started on it.
It's quite a dilemma. I can only hope that what folks say on this forum about things improving once you've stopped the dopamine agonist is true.
I don't believe however that things can improve to being better than how it was before I started taking Pramipexole, and certainly not without taking something else to replace it.
Gabapentin seems a feasible alternative. Not entirely acceptable, it isn't completely acceptable to have to take any medication at all.
I think the key words are "patience" and "hope".
Patience in that it takes time to wean off Pramipexole and it takes time for Gabapentin to start to work. There's lots of information to suggest that Gabapentin does work. So maybe there's hope.
I started on Gabapentin coincidentally, for nerve pain. Only found out after that it was also used for RLS. When I read the list of side effects I was horrified. However, after taking it for 8 months now, can't really notice any.
I am v e r y s l o w l y weaning off pramipexole.
You can take Gabapentin at the same time as a dopamine agonist (DA). I even recall reading it recommended somewhere, (lower dose of both = less side effects).
Some people say that Gabapentin can't work whilst taking a DA. I haven't come across any evidence of that. I can't see logically why one medication that acts in one way can prevent another working that acts in another way. Failing any evidence to the contrary, I can't see why you can't slowly increase the dose of one whilst lowering the dose of the other.
Certainly 100mg is a very low dose. There are schedules for the rate at which you can increase it. Perhaps you could ask your doctor, (can't understand why they didn't tell you), after all, you will need more prescribing.
Apparently opiates can be effective in treating RLS in some cases. Might be useful whilst weaning off the DA. I've chosen not to do that unless as a last resort, partly because my GP refuses to prescribe any. I certainly wouldn't consider taking any without prescription.
Overall, I'd say, wean off the DA slowly, have patience. Increase the Gabapentin and if things get unbearable see about a prescription opiate.
Incidentally, if you stopped taking the zopiclone suddenly, you would have withdrawal symptoms.
Hope this helps
Hello Hoochybaby
I started Gabapentin about 1 year ago at 3 times 300mg a day, ( I had been on Ropinerole for some time before without success) Gabapentin worked instantly. I soon went down to twice a day 300mg. and now on once a day at 9pm 300mg. No symptoms. I hope this information helps you.
I was on 7mg ropinorole and have started my defend went down to 4mg 3days ago some what manageable but around 7pm the rls kicks in a little and around 9pm I take a 3mg ropinorole and at bedtime 150 mg lyrica and I sleep well til about 4 or 5am then get up just become alert not due to the rls so even I will have the chronic rls withdrawal once I get totally of the ropinorole the Gabapentin wont help in the treansision
You can take 900 mg Gabapentin but needs to be increased slowly
Hi Hoochybaby
I guess you must do what you feel is best for you. I have osteoarthritis which if my fingers get painful I put some volterol on in the morning & some at night. .I have the medium version of it on prescription from my gp my mum wont let me buy the max strength for fears I may get hooked . A lot of these medications mentiond on here Ive never heard of . Good luck
I had augmentation from a DA dopamine agonist, had the horrible effects and did not have any methadone or tramadol or anything else. It was difficult but not impossible. I started on gabapentin start dose 300mg an hour before bed. The lower dose you can feel relief on the better. The dosing for gabapentin is different for different ailments so be careful.
Hi. I totally sympathize with you. I’m so sorry it’s been rough. Question—How do you know that it is your six week of going through augmentation? It’s not something that you know when exactly starts happening. That being said I was on Mirapex and just stopped taking it because it wasn’t helping anymore even after going up on dosage a few times. My doctor was not knowledgeable enough to tell me I needed to wean off of it number one and number two she knew nothing about augmentation, which is why when it wasn’t working well she would keep upping the milligram. It wasn’t until I did a whole bunch of research that I found out about augmentation and realized that that’s probably what I was starting to go through as my legs were worse than ever. After going to a neurologist and also finding out that I have peripheral neuropathy in my legs and discussing the RLS he felt it best to send me to a pain management doctor. The pain management doctor didn’t know much about RLS but he put me on oxycodone with Tylenol 10/325 ( Percocet ) one at night, and gabapentin 600 mg one tablet three times a day. The Gabapentin gave me more of a high then the oxycodone. I have been on those two medications since August 2018. Neither medication gives me a high anymore. Which is fine by me. But I don’t find that they help much anymore, But the Percocet definitely helps more than the gabapentin. I could write a book with my story. But I’ll just stick to the point of you asking for any advice on the gabapentin. First and most important you need to ask your doctor if that’s even going to help you because that’s a very low-dose at once a day. He or she may not be very knowledgeable in RLS so you may want to gather some research to present. The gabapentin causes me to sleep and sleep and my coordination is off my memory and thought process and concentration, they are all out of whack. And when I say the gabapentin makes me sleep and sleep that’s only if it works enough to help my legs. It’s just a vicious circle and I can’t make sense out it really. But, if you are as miserable as I was and going out of your mind as I was and still am, at least three or five times a week, You should take it and not worry about it. You need to get relief and you need to try things in order to do that. That’s just my personal thoughts on that. I pray and wish you the best in finding relief with this horrible disease. I’m still searching for that myself and it’s not going good. I keep an index card by my bed with my mantra written on it, “ I will not give up I will get better “
Many thanks for your reply. I have been keeping a daily chart of my pramipexole dosage and reactions to the weaning off process and to be quite honest a
I can't make head or tails of my progress it doesn't seem to follow any logic. Originally I was taking a 0.52mg morning and night and the neurologist I saw seemed to think this was perfectly reasonable! But eventually it caught up with me and didn't have the desired effect any more( I was coping very well with this dosage) and augmentation kicked in.
I have now v gradually reduced the morning dosage to nil or 0.18mg and keeping the 0.52mg at night but last night I didn't sleep at all! But the night before I did sleep illogical!
My next step I believe will be to see my gp ( only one in the practice that seems to know anything about rls) and try and get some more clarification on useing gabepentin as my step forward because at the moment I don't seem to be getting anywhere we are classed as the hidden sick because no one sees our illness unless we talk about it and even then because you look well it's disregarded. I than everyone who took the time to respond to my query and its appreciated
Hi many thanks for your reply. I forgot to say that I went to my gp when a started to augmentation a few months ago I explained that the prolonged release Pramipexole was no longer being effective I had had months of relief with this drug but gradually increased the dosage on the advice of a neurologist so that I was taking 0.52mg morning and night. The gp suggested that I withdraw v slowly which I have done so that at present I am only on .18mg morning and still on .52mg night which is not now being effective. I am now seriously thinking about Gabapentin because of the lack of sleep is causing concern and affecting my judgment. Thank you for your advice I
I suffer from RLS but began taking gabapentin 6 years ago for chronic lower back pain and am taking 600mg 3 times a day and i was told i could increase alot more if necessary . This amount did not make any difference to my RLS when i augmented on Ropinerole but i must be one of the unlucky ones because so many have benefitted from it on here. Good luck
I use this, it's been my saviour.. I take 300mg as and when I need too.. Sometimes 900mg if its really bad.. I've never felt addicted to it cause I don't use all the time, only when desperate
I wish I had some good advice to pass on, but unfortunately my primary doctor has no interest in RLS I can tell. I am getting a new primary in May so I ho[e he is more informed. I'm takeing all the info from the internet with me so he can see how RLS affects all of us and what the FDA and the RLS foundation are doing to help us.
If I gather anything new I certainly will pass it on. Here's to a good nights sleep
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