Even more advise please!

[Scattypatty]

Hi everyone,

I’m trying to get off Ropinirole, I have lowered the dose over the last few days which means I am now on 0.25mg. I also started on 25mg of Pregabalin at the same time I reduced the Ropinirole. My doctor has told me to increase the Pregabalin by 25mg every week till I reach 100mg. I would like to know from anybody that has also changed from Ropinirole to Pregabalin if this is how they have done it. Also I have been in agony since reducing the dosage, about 2 hours sleep a night, terrible pains in my legs, arms, neck and back. The doctor has given me Co Codamol to help with the pain but it really doesn’t help very much. Also has anybody suffered with their bladder when the RLS is really bad, I found that Mine goes into overdrive! Also I can’t stop eating when I’m in all this pain as well.

Does 100mg sound enough of a dose to keep the RLS at bay or should I increase it, and how long should I carry on taking the last bit of Ropinirole before giving it up.

Thanks

[Madlegs1]

You are so lucky to have a knowledgeable doctor.

He seems to be on the ball.

You are suffering withdrawal--- and it is not easy. The opiate should help. You could ask him to up it a bit for a short time.

Trust him.

Good luck.

[Scattypatty in reply to Madlegs1]

Thank you. My Doctor, like a lot of doctors is only knowledgeable because I have given him that knowledge from the information I have gathered from this site. That is why I asked if what he is saying sounds right. I know I’ve still got a long way to go and not looking forward to it at all.

[Joolsg]

The pregabalin takes 3 weeks to be fully effective and your doctor is being very cautious in suggesting you titrate up by 25mg every week. I personally think you could increase by 25mg every 3-4 days.

You will be in withdrawal now and it will kick in big time the moment you drop that last 0.25mg and the co codamol may not be strong enough.

Can your doctor give you codeine 30mg or tramadol 50mg to enable you to drop the Ropinirole? The 10-14 days after the last dose are not pleasant ( that’s an understatement).

I switched to tramadol and Gabapentin after Ropinirole but they didn’t seem to help much ( but I was probably still in withdrawal).

After 2-3 months I switched to OxyContin and pregabalin and found the OxyContin was much better.

Pregabalin alone can be taken up to 300mg for RLS.

Will your GP prescribe tramadol or OxyContin? If you’re in the UK, Targinact is licensed by NICE for RLS so your GP should prescribe it ( as long as your local health trust hasn’t put it on their banned list of meds under the post code lottery).

[Scattypatty in reply to Joolsg]

Thank you for all that information, it was very informative. Apart from Ropinirole I’m a real novice when it comes to drugs so I’ve had to look up everything you have suggested. If the pain gets too much i might well suggest them to the doctor. I’m pleased you have found the right combination for yourself.

[Insomniak]

Good luck Scattypatty - on one of your questions. Yes, I find that I eat too much when the RLS is bad. It gives some sort of momentary pleasure hit to the brain that abates the RLS. I am on 4mg per day of Ropinrole plus 150mg per day of Pregablin. I still have occasional RLS breakthroughs and I use co-codamol and it does work.

[Scattypatty in reply to Insomniak]

You have described the eating exactly! I’m thinking a diet is the order of the day now. You are taking quite a high dose of Ropinirole have you not had any augmentation since taking it. The maximum I took was 2mg a day and suffered a gambling addiction while taking it and augmentation. Just getting down to 0.25mg of Ropinirole has been a nightmare, had a terrible night sleep again last night plus pains all over my body. I was told that I could only start taking the Pregabalin when I reduced my Ropinirole to nearly nothing. Have you always been on 4mg of Ropinirole or have you had it increased over time?

[Insomniak]

I gradually increased the dosage of Ropinrole and also moved to a slow release variant. When I got to 4mg my neurologist said that was the maximum that he was happy to prescribe. He then introduced Pregablin initially at 50mg per day and over the last 3 years I have needed that moved up to 150mg and he says that i have some head room there as i can go to 300mg ultimately. After that the next level of medication will be opiates which he is reluctant to start me on due to their addictive potential. I don't know if the meds are making me more prone to addictive behaviour. I do game on line quite a bit but I have done that all my life. I do feel a lot less inhibited nowadays and I like to adopt contrarian views but I put that down too just getting older. The Doc had my wife in with me and explained that she should alert him if she saw changes in my behaviour (bit tough on her to have to police me). I am 56 and in the fortunate position that I have been able to reduce my working week to 2 or 3 days with the option to work around RLS breakouts which has helped reduce my stress which definitely helps reduce the RLS. I would love to be free of meds so I can only applaud what you are doing and hope that some day i will be able to do the same.

[Lapsedrunner in reply to Insomniak]

Dopamine agonists can cause “impulse control disorder “ eg impulsive decisions to overspend, gamble etc. This has got people into very difficult circumstances and it’s not unusual for Drs to warn partners/family.

[Sara_2611]

Ive never had a bladder problem in connection with RLS

[troopdad]

Hi SP YourDrhas missed a fact that RLS is a chronic disorder.So when you find a happy medium stick with it.I used to take about eight tablets per day My Neuro ad a fit so I cut them out cold turkey'MY RLS kicks in about 6-8 pm so i take one Ropinrole at 300PM so it will be in my system as needed.. I have had RLS for about 81 years with breaks on occasion..Since it is a neuro disorder the less you think about the better.Good Luck and remember the Allmighty loves you.

Troopdad

[troopdad]

Dear SC, if you can still read the above post.the fact is this is true.Nothing has changed 1 per day at 3pm and set for the night.If I miss a dose it is difficult for me. It is control not cure.It is chronic and you can live with the Neuro disease..oood luck.

Troopdad

[troopdad]

Say it again RLS is a disease of the Neurological side of our being Human. CONTROL NOT A CURE ///

Troopdad