Withdrawal from Roprinirole almost complete with promising results.

[cicek]

I am now down to half a .25mg dose and have been at this stage for about 2 weeks. Will stop altogether this week. I have upped my dose of Pregabalin to 2 x 50mg daily. Before Christmas I had three RLS free days. Unfortunately this did not last but symptoms are now not happening (generally) until around 10.00 p.m. and by midnight when I go to bed have disappeared. On occasional nights I awake thrashing my legs really badly but seem to be able to go back to sleep. All of this seems to be moving in the right direction and I know I will have to gradually increase the Pregabalin. I will do this very slowly as I have done everything else. As far as my Ferritin level (32 down from 200) is concerned, my Haematologist has advised I do NOT take iron due to my Polycythemia as it could cause problems. Between a rock and hard place with that one! Thank you to everyone on here who has encouraged me. I know I am not out of the woods yet but everything is much better than it was. When I increased my Pregabalin is it usual to double one dose i.e. 100mg at 5.00 p.m. and 50mg at 11.00 p.m. or should I spread it out over three doses. GP had no idea about this. Happy New Year to you all. I hope you have all managed to get some peace.

[Munroist]

Hi, I found the effects of pregabalin were not particularly dependent on the time you take it and actually built up over several days. I chose 8 am and 8 pm as that would mean the dose was fairly high when I went to bed, and also I would start the day knowing that again it would be high in the first few hours but it didn’t really seem to dip noticeably between the doses. I think either two or three doses will work just as well, if you have a particularly bad time then it might be worth taking a double dose an hour or so before that

[cicek in reply to Munroist]

Thank you I'll bear that in mind. I consider myself very lucky at the moment as I am getting lots of relief. Considering how bad I was it's like a miracle for me.

[Pam34]

Hi

I’ve been on Pregabalin for several years now after a horrendous withdrawal from ropinirole. I take 150mg at about 8pm and this dose has remained constant. I occasionally take an extra 50mg later at night if I have breakthrough RLS. But this is rare.

I don’t feel the need for it during the day. Since my body recovered from the ropinirole withdrawal my RLS has reverted back to evening and night time only.

Hope that helps

Pam

[cicek in reply to Pam34]

Thanks for your reply. I'm pleased to hear you are getting relief and that it has been long lasting. I was almost ready for giving up just before Christmas but then seemed to turn a corner. I am only taking 100 mg in total of Pregabalin but will increase it if I find things get more difficult. At the moment I can't believe how lucky I am with such mild symptoms. Like you, I only get symptoms in the evening now and they are not too bad at all, whereas it got to be for most of the day before.

[Elaniemarie in reply to Pam34]

Hi Pam34, I am in the process of getting of Ropinerol myself, I am wondering how long you were on Ropinerol for. I used to take 6mg (3 x 2mg per day) then got down to 2mg x 2 per day; now in the process of cutting down the night dose. Last night was awful, pacing until the small hours, during which I took 2mg Ropinerol and 60mg Dihydrocodeine, then Ibuprofen, followed by a banana and pink gin!

[Pam34 in reply to Elaniemarie]

I was only on it about 6 months before augmentation set in. My GP initially increased it from 1mg to 2mg. When that stopped working he wanted to increase it to 3mg but by this point I had done my own research, discovered this site, and realised that increasing the dose was the worst thing I could do. Although it was impossible to make my GP realise this and I ended up putting a letter of complaint in to the practice (no reply of course….)

I decided to wean myself off with the support of some people on this site - mainly Jools and Pipps. I was also fortunate enough to have a few Tramadol left from previous surgery and found this helped with the withdrawal. Another GP within the practice was willing to prescribe me more Tramadol short term until I was finally free of ropinirole. I can honestly say it was the hardest thing I’ve ever done and I was on a much much lower dose than you. I couldn’t have got through it without Tramadol. It went some way to ease the symptoms and allowed me short stretches of sleep - often standing up and leaning against something. I’m not sure at what rate you are decreasing your dose. It needs to be very slow - 1/4 mg at a time for at least a couple of weeks before another reduction. Don’t be tempted to rush it. Believe me, once you are free of it it will feel like the best thing you have ever done. And don’t ever be tempted with any other dopamine drug.

Good luck and if gin helps….

Pam

[Elaniemarie in reply to Pam34]

Hi Pam34, sorry, just spotted your message. I agree with all you say about DAs, and unless the GP has a family member with it, or suffers themselves, it is an uphill battle for understanding our problems. My legs are 'ginormous' and the rest of me following suit. I did not do well after the gin and have not had it since; going to avoid it except with occasional meal. Decaffeinated coffee seems to help, and started on 'Solgar' Gentle Ferritin. My Ferritin is 111, so probably needs boosting; slowly increasing that. I am struggling but determined 💪. Thanks for replying. Hope you are successful!

[Pam34]

Exactly. I got no relief at all from ropinirole. It seemed like a miracle when my daytime RLS disappeared. Just play about with your dose in the evening and find out what works best for you. Expect a rocky bit when you drop the last ropinirole that may last a few weeks but you may be lucky and sail through it 🤞🏻.Well done you for making it this far. It is no easy feat is it?!!

[cicek in reply to Pam34]

I did get relief from Roprinirole for many many years but once it stopped, it stopped big time (augmentation I understand). You are right, it has not been easy and thanks for your support along with all the others on this site. I decided to stop the Roprinirole (half .25mg) two days ago. It was an exceptionally low dose so I made my decision and now all the meds I had left have gone to the pharmacy to be destroyed!!! I'll keep you informed as to how I progress. I guess, like you say, I will have to play around with the Pregabalin for a while but I'm not going to rock the boat until/unless I need to. Happy New Year to you.

[SueJohnson]

You can take the pregabalin all in one dose 1-2 hours before you go to bed. Unlike gabapentin at higher doses there is no need to split the doses as there is not the absorption problem.

[cicek in reply to SueJohnson]

Thank you Sue. I feel in such a happy place at the moment as I was suffering every day for months and it just seemed to go away with less and less Roprinirole. I've been on the Pregabalin for about 6 weeks now gradually moving from 50mg to 100mg. It's good to know I can take it all at the same time. I am going to stay as I am at the moment, one dose around 5.00 p.m. and another about 11.00 p.m. as it seems to be working and I am sleeping very well. All too good to be true? I hope not. I would just like all sufferers to be as lucky as I am at the moment. Happy New Year.