Pregabalin doesn't seem to be working yet.

[Coopersmum]

Well I am now off Ropinerole since the 13th is August, thankfully. I did it in half the recommended time as I had just had an iron infusion, which was helping with the augmentation. It was quite scary for the last three weeks especially. Very little sleep and a lot of pain in my legs. I am currently taking 175 mg of Pregabalin, having started at 75 mg three weeks before my last reduction of Ropinerole and increasing the Pregabalin steadily by 0.25 mg. I am still having only 3 to 4 hours sleep. My legs are restless, jumpy and painful. I feel really drowsy and ' drugged up' unable to concentrate and physically exhausted during the day. I still dread might time especially the three hours usually between 9pm and midnight as there is literally nothing I can do to feel comfortable enough to sleep, even though I am exhausted.Can anyone who has been on the same journey please tell me it will improve as I am due back to work the week after next and I have no idea how I will manage this.

[SueJohnson]

Yes it will improve. You have only been off ropinirole for 11 days. It will take several weeks before the withdrawal effects settle and the pregabalin starts to really work. Especially since you came off it so quickly. Speeding things up as you did can make it take longer to settle.

[Coopersmum in reply to SueJohnson]

Thank you for getting back to me Sue. Thank heaven's for that, I am at the point where I thought what has the point of all that suffering coming off Ropinerole when I don't feel any better. Should I increase the Pregabalin to the maximum level, 450 mg according to the Neurologist or increase more slowly, if things will improve when the withdrawal symptoms stop ? I would appreciate your advice on this

[SueJohnson in reply to Coopersmum]

I would wait at this point because you may not need 450 mg as few people do and you want to be on the lowest dose that controls your symptoms. You might increase to 200 but I would stop there for now.

[Joolsg]

You've only been off Ropinirole for 11 days. Ropinirole has been damaging your brain for years. The dopamine receptors can take months to settle.Getting off Ropinirole is more difficult than getting off heroin or crack cocaine.

If you look at RLS-UK website, it tells you what to expect. The first 2 weeks after you stop Ropinirole, you will get little to no sleep. Then, each day you will start to get 30 mins extra rest.

The pregabalin takes 3 weeks to be fully effective.

If it still doesn't cover the RLS after another 2 months, you can then consider switching to a long half life opioid.

But allow the dopamine receptors time to heal.

If it doesn't help after about 2 to 3 months, you can ask for a low dose, long half life opioid ( methadone or Buprenorphine).

[Coopersmum in reply to Joolsg]

Thank you for the information and advice. I appreciate your continued support.

[HipHop1972]

Hello Coopersmum, first very well done for coming of Ropinirole it’s not an easy journey and took me 13 months as was on 6mg / day. As Sue and Joolsg say you need to give it time. I went on to Pregabalin but it didn’t suit me, luckily found a Specialist who was willing to prescribe Buprenorphine parches, have to collect from hospital pharmacy as my GP refuses to prescribe them. Been taking for 2 months now and working well so if things don’t improve as Sue and Joolsg say see if you can be prescribed Buprenorphine. I think it’s more usually taken in tablet form and not 7 day patches. I have found that occasionally a patch doesn’t work, so suspect it’s a dud one. Anyway good luck and hope you improve before going back to work

HipHop1972 👍

[Coopersmum in reply to HipHop1972]

Thanks so much for the advice I will certainly make a note of it.

[Doversoul]

I have been on Pregabalin for several years. For me, it isn't a cure. I can now take a train journey, visit a theatre, friends, etc and my legs are on most occasions and are RLS free. So that is a huge plus for me.

I have sleep problems still and most nights, I suffer RLS as soon as I am in bed. But I do eventually get to sleep and I put this down to Trazadone working inconjunction with the pregabalin.

My daily dose of Pregabalin is up to 300mg taken before bed at night. It's a odd thing that I find 3x100mg tabs work better than 2 x150mg tabs. sometimes I lower the daily dose to 250mg and very occasionally I need 350mg.

[Coopersmum in reply to Doversoul]

Hi Doversoul, thank you for telling me your experience with Pregabalin as it's a new drug to me. I was hoping it would help with my sleep as I have been suffering with chronic fatigue mainly, I think due to lack of sleep and poor quality of sleep. So far I feel that the iron infusion was the best thing for me as it has really helped me through the withdrawal from Ropinerole. I have been on Pregabalin for several weeks now, increasing Again, tb gradually every week. So far my RLS is still painful, my legs feel bruised to touch and my sleep is still really poor. From the replies I have had to my post this is still due to withdrawal. I am hoping to feel the positive effects of Pregabalin in the weeks to come. Again, thank you for taking the time to reply I really appreciate it.