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[goonerguy]

Have had RLS for approx 25 years with varying degrees of discomfort. Experienced rebound and possibly augmentation with sinemet, Took pramipexole for about ten years and switched to ropinirole three years ago when pramipexole was no longer effective. Am now definitely experiencing augmentation with ropinirole and am in the process of weaning myself off it. I hope that when ropinerole is no longer in my system that at least I can go back to "normal" RLS. This augmented version is really no fun: sleeping two hours a night max, symptoms starting in late morning and increasing throughout day, peaking at bedtime. Strong burning sensation in legs, arms and back with very strong myoclonus beginning around 9 PM. So that's where I'm at. Trying to decide what to do next. Dopamine agonists definitely out. Horizant apparently not in play because I have lung disease. My doc not amenable to opiodes under any circumstance and I have to say I would be extremely reluctant to go that route. I take clonazapam (0.5 mg) for nocturnal mypclonus since 12 years or so. Increasing clonazapam dose might be an option. The other thing I'm considering is medical marijuana. Glad to meet you all.

[Ranjits]

I was on premipoxle for 9 year I am coming off nearly there much better ism on Rotingine patches starting with one mg now can sleep better with my clean eating habits inflammation in the stomach make it worse no caffeine.

[Alfluff]

Hi, I have been taking Pramipexole for 14 years, now add no relief. My GP had prescribed Gabapentine, 4 days in and starting to work, last night slept through for the first time in days. Hope it continues. I will keep you posted.

Regards Alan

[Joolsg]

Where are you? I think the USA? There are several specialists in the USA & several Centres of Excellence. If you live nearby that would be your best option.

They can prescribe opioids at low dose.

[goonerguy in reply to Joolsg]

Hi. I'm in Tucson, Arizona. My best bet would be Mayo Clinic in Scottsdale but unfortunately they do not accept Medicare. I have been to two neurologists here in Tucson but was not impressed. We moved here from Denver in 2013 and I had a very good neurologist there at U of Colorado Health Center. May end up needing to take a road trip. I am continuing to look here in Tucson for a knowledgeable practitioner. It's kind of amazing how uninformed so many health care professionals are in matters like this. Right now my greatest hope is that when this ropinirole is out of my system I will at least find some relief during the day. As it is I'm pretty miserable 24 hours of the day. Thanks for the advice. Best to you.

[Joolsg in reply to goonerguy]

I’m so sorry you’re restricted by the health system over there. We don’t have that system here in England. We can ask for a referral to any neurologist and our taxes pay for free NHS consultations & ALL meds are covered by a maximum £105 per annum. However, we only have a handful of neurologists who know anything about RLS.

Dr Buchfuhrer in California is superb & answers all questions promptly & free of charge. You can email him at

[e-mail]

He’s based in Redwood California.

[Hidden in reply to goonerguy]

It may be some consolation, as you say augmentation is worse than "normal" RLS, so by stopping the dopamine agonist you may experience some improvement.

Neurontin, horizant or lyrica aren't necessarily automatically excluded if you have lung disease. It depends what the exact disease is and if it has affected the respiratory centres in your brain. Normally these 3 only cause respiratory distress if you have pre-existing central respiratory depression. It might be worth then discussing that with your PCP.

If you do have some central resiratory depression as a result of your lung disease then unfortunately opioids, which are also resiratory depressants, could also be a problem.

Other things you can do is be checked for iron deficiency, i.e. serum iron, transferrin, ferritin and hemoglobin. If your ferritin is below 75 ng/mL then you may benefit from iron therapy.

If you are onany other medications, then it could be that they are making your RLS worse.

[Henshaw241241]

Hi I have had RLS for years trying different tablets then I went back to the doctors then they put me on pregabalin 75 mg 1 tablet at 6 pm and 1 at 9 pm the best thing what ever happened lovely night's sleep no walking around outside and climbing walls I was on pramipexole I had a job to get off them I went into Augmentation. It took a long time to come off them you have to cut them down very slow please don't go on them I will tell anyone take care Tonyhenshaw241241

[Marmaset]

Hi Goonerguy. My experience with Pramipexole over the past 9 years has been positive. Last year I did start to experience augmentation but that was due to my being on a lower dose than I could be taking. My Dr prescribed a higher dose of Pramipexole, and it worked. I would add that I also take Gabapentin and, most nights, Co-codemol, and my RLS is under control, though I do now experience problems with pins & needles and tight skin in my feet , and I am waiting to get that sorted once Covid has stabilsed. Because I was experiencing violent movements and couldn't sleep (this was diagnosed by a Sleep Clinic), my Neurologist suggested switching to Rotigotine patches, but my Dr was concerned about the side effects of these patches. My Neurologist did advise me that I might experience augmentation from Pramipexol again, and that that would be the time to switch to other medications but, again, augmentation can be experienced with any meds for RLS, and it is a case of switching back to previous meds - he explained that, when needed, switching back and forth with meds was the best answer. I hope you find this information useful, and I do hope you get the correct medication that will give you relief. Most GP's know very little about RLS, so I would suggest you get as much information about this dreadful condition as you can, so that you can be firm with your Dr when it comes to finding relief. Good Luck.

[Marmaset]

Hi again Goonerguy. I forgot to mention in my previous reply, that you should ask your Dr for a blood test to check your ferritin levels, as low levels of ferritin will affect RLS. For people with RLS, their ferritin levels need to be above 75, any lower and you would definitely benefit from a course of iron tablets. I have needed to have iron tablets on two occasions due to low ferritin levels, and on each occasion the increased ferritin levels helped tremendously.