Question about stopping pramipexole

[Sumoucat]

I was so hoping that at this point (day 6 with no pramipexole) I would be able to say, "I did it!" but such is not the case. I started the process few weeks back, starting on gabapentin (300 mg) while staying on pramipexole (.5 mg). After a week, went on half a dose of pram. and up to 600 mg gabapentin. Things were okay, not as bad as I'd expected. Then, after another week, down to 1/4 of the pram. After a week of that down to nothing and staying at 600 mg gabapentin.

I'd been getting an hour of sleep at a time, things a little better in the morning, could sit putting pressure on my feet/toes, and kratom has helped some. Yesterday and today, though, things are much worse. I've had to walk and walk, with no relief from walking. Kratom has barely helped. My legs just laugh at Tramadol.

So, what I'm asking is, is this normal? I'd expected the worst part to be at the beginning of no pramipexole, not five days into it. I think I'll try 900 mg of gabapentin tonight.

At least I can hope that the worst won't last more than a few more days.

Thank you.

Sue

[LotteM]

Hi Sue, are you doing this on your own? I admire you for taking this upon you. I do think you may have gone a bit too quickly. 0.5mg prami is not a low dose and especially the last reductions are the hardest. Did you respond relatively well to the reduction to 0.25mg and then 0.125mg? You may have to slow down the process to the acceptance rate of your body. I mean, wait until your symptoms have become more or less bearable again after a reduction before you start on the next reduction. Do you have 0.125mg pills? If so, you may want to return to that dose, or even take only half of a 0.125mg pill and see if you can bear with the symptoms. Usually, the final reduction is the hardest and symptoms increase and are often close to unbearable for at least two weeks, but this nasty phase may last much longer. If you want tramadol or kratom to have effect, you need to take it before the symptoms start - if that is possible.

Also, don't go too quickly on increasing the gabapentin. It takes time to become effective. And, above all, its effectiveness is currently clouded by the withdrawal effects from the pramipexole.

But hey, you've done great so far, thus hang in there. Take it slow, but also be prepared for some really bad weeks. I do hope you will start to feel better soon with much much reduced symptoms.

[Sumoucat in reply to LotteM]

Thank you for replying so quickly, Lotte. Yes, I'm doing this on my own. The physician's assistant I saw had never heard of augmentation, said the only way she knows how to treat RLS is through ropinerole or pramipexole. Oh well.) I had no idea, though, that I've been doing this quickly. That explains it! Now that I've gotten this far and I know why I'm feeling like I do, I can face the rest of it. And I'll hold off on upping the gabapentin.

[Hidden]

Well done, you've done really well and you should try and stick it out.

I have to agree with Lotte though, you went a bit fast. I weaned off 0.75 mg, nut I did it slowly, it took me about 11 months. The last 0.5 mg about 6 months. I was cutting 0.125 tabs in quarters! I'd also stay on each reduced dose about 4 weeks.

It is well worth the struggle. I'm now just on 600mg Gabapentin, sleeping and, at the moment no RLS symptoms.

[Sumoucat in reply to Hidden]

Thank you for your reply, Manerva. I had read your post about coming off pramipexole, but didn't realize it had taken that long. I'm hoping that I, too, can get on a dose of 600 mg gabapentin with no RLS symptoms. I've had this disease since little kid time, when I called it "dancing feet." You're an inspiration to me.

[Hidden]

I have had RLS for 50 years. Initially a couple times a year and then more and more often. Everything I try works for a while then doesn’t. I’m on 1600 mg Gabapentin at the moment. It wasn’t helping much until I started taking two capsules at 5 PM and two at bed time. I have been doing that for about three months. I still twitch for a while in bed but it’s manageable so far.