Transitioning off pramapezole

[robertff3401]

I am 90 years old and have been on pramipexole for over 30 years. Although I was aware that the pramipexole was becoming less effective (I had gone from 0.25 mg/day to 1.0 mg/day over those 30 years), I had done almost no research on RLS and was unaware of augmentation. Then I discovered this website and whole new world of awareness about RLS opened up to me. I decided to transition off pramipexole and met with my PCP to develop a plan. I wanted to use pregablin, but my PCP would not approve that because of a side effect which, according to him, made losing my balance and falling more likely. Instead he wanted me to use Sinemet (carbidopa-levodopa, 25-100 mg) and suggested an 8-week schedule for gradually replacing the pramipeole with Sinemet. That went very smoothly, and I finished the routine just 3 days ago. The first two days on Sinemet only, I took one 25-100mg tablet at 3 pm and a second at 6 pm. I was able to go to sleep but was awakened at 2 am with one twitching leg. The second night I increased the dosage about 50 mg. and I was able to sleep through the night. The third night (tonight) nothing seemed to work. After one tablet at 3 and one at 6 pm, I had no relief from my RLS. I've soaked my legs in a hot bath twice and still the RLS persists. It's now 3:45 am and I've had no sleep tonight. Is it "normal" to have such inconsistencies in the performance of the drug transitioned to until it has been used longer? I still think pregablin would have been a better choice since I've since read that Sinemet also is subject to augmentation. I would appreciate any comment.

[SueJohnson]

Have you had your bone density checked? If you have osteopenia or osteoporosis then falling would not be good since you could break a hip. There is a good chance pregabalin might not work after being on pramipexole for so long. Have you had your ferritin checked? The other choice is a low dose opioid.

[robertff3401 in reply to SueJohnson]

I am in the osteopenia classification. I can understand my doctor's concern about my falling; I too would not like that. But, I don't want to spend most of my nights roaming around my house because I can't sleep. I can only hope that Sinemet will eventually work out OK. However, I think I've replaced one dopamine agonist (pramipexole) with another (carbidopa-levodopa).

I had not had my ferritin checked until last week. The result was 66 so I'm low in that regard, and I've started taking an iron-vitamin C combo. If I get the ferritin up over l00 maybe that will help. Thanks so much for your response Sue. I've read many of your comments on this website and always appreciate your grasp of the various aspects of RLS. I wouldn't want to go the low-dose opioid route, but if it's necessary, I will.

[Joolsg]

Oh Robert,I am sorry your doctor put you on Sinemet.

He is clearly not up to date on RLS treatment because sinemet should only ever be used for intermittent RLS and even then, only on an occasional basis as it has the highest rate of Augmentation.

You were on an extremely high dose of Pramipexole, so any reduction would have to be done extremely slowly, over a minimum of 6 months usually, with the help of an opioid to settle withdrawal symptoms on each dose reduction.

Pregabalin and gabapentin do cause dizziness and loss of balance which is why the Mayo algorithm suggests a lower starting dose to monitor effects.

As Sue advises, a low dose opioid would have been a better consideration.

Which state are you in? If you live near a Centre Of Excellence for RLS, you should get a referral to someone who knows about RLS and they will help you.

The US RLS foundation costs $35 to join and has lists of help groups in US states.

In the meantime, see your doctor again and show him the Mayo Clinic Algorithm on RLS and this article by Dr. Winkelman at Massachussetts General explaining why Pramipexole, Ropinirole. Sinemet and the Neupro patch are dangerous and should no longer be prescribed.

You could also email a top US expert, Dr Buchfuhrer, and he replies quickly and free of charge with brief advice.

His email is:

[e-mail]

mayoclinicproceedings.org/a...

sleepreviewmag.com/sleep-tr...

I wish you all the best. Do let us know how you get on.

[robertff3401 in reply to Joolsg]

Thanks so much for all the information and the reference for Dr Buchfuhrer. I think I will write him as ask his opinion about my next step. One correction. I was on pramipexole for those 30 years not pregabalin. Again, thanks for your help.

[Joolsg in reply to robertff3401]

Apologies. I thought I'd edited that. I'll correct it.Dr Buchfuhrer is an absolute saint. He has freely given advice to so many people on this forum. He co wrote the Mayo algorithm and is a top RLS expert. He's in California.

[robertff3401 in reply to Joolsg]

I didn't answer your question about where I live. I live in Texas and I do have access to several neurologists associated with the UT Southwestern Medical School in Dallas who are very up to date on RLS. I only wish I had consulted one of them before I began my transition off pramipexole. I am a new member of the RLS foundation. I called them yesterday, but they had only one neurologist in the Dallas-Ft. Worth area. I have that name.

[Joolsg in reply to robertff3401]

Dr William Ondo is a world expert on RLS and he's based in Houston. If you can drive the 4 hours to Houston, he may be worth seeing. Or he may do zoom appointments and prescribe accordingly.

William G. Ondo, MD

[phone]

g.co/kgs/MHuH4n

[SueJohnson in reply to Joolsg]

It now costs $40 for US and for international people to join.

[Joolsg in reply to SueJohnson]

Many thanks for the update Sue.

[Doings]

i was in same boat with Pramipexole for 26 years. Eventually weaned off successfully and began Pregabalin which really is a godsend. The best advice i got was from this Forum advising to begin the Pregabalin a couple weeks in from last Pramipexole pill. I take the 2x50mg pills together in mid to late evening to kick-in at night. No point taking one in morning and one in evening when you need all the help directly at might not during day.

Im a lousey sleeper anyway but Pregabalin really helps. Id rsther risk loosing balance occasionally than having rls and no sleep. Mind you I hadn’t heard it was a side effect but id put up with it. .

[robertff3401 in reply to Doings]

Thanks for your comment Doings. I too would rather chance losing my balance than not getting any sleep. But it is what it is! I'm now completely off pramipexole, but I replaced it with another drug in the same category: Sinemet (carbidopa-levodopa). Unfortunately, I discovered that it has one of the highest rates for augmentation. So, I've replaced a bad choice (pramipexole) with another (Sinemet). I suspect that I'll be replacing Sinemet soon. One very positive things that has come from reading advice on this website is that I had my ferritin checked. It was low (66) and I began taking iron/vitamin C tablets just over a week ago. Already my RLS has SIGNIFICANTLY improved. The last 3 nights, I have had NO restless legs at all. That wasn't true before taking the iron even though I had alteady transitioned off pramipexole. I'll continue to check my ferritin level to keep it 100 or above. By the way, I have also slept much better the past 3 nights.