I’m hoping that after the excellent advice I’ve already received from this Forum you will be able to help again.
I previously asked for advice on coming off Ropinirole as I suffered a gambling addiction through it plus I was augmenting. Obviously all the advice was to get off Ropinirole as soon as possible which is what I tried to do. I was taking 2mg tablets a night and after a lot of effort and severe suffering I got down to half a tablet. Apart from being prescribed Co Codomol by my doctor to help me through this difficult time I was basically told to just get in with it. Now this is where I have been really bad. I felt really worn down talking about RLS over the years and not really getting anywhere with it that I had given up on trying and just accepting my lot.
When I got to the stage of taking just half a tablet of Ropinirole I was in so much agony with my legs, arms and shoulders that I couldn’t get off them completely, in fact I did the opposite and took another 0.25mg of Ropinirole. Once I started taking the extra 0.25 of the tablet I was at last getting some much needed sleep and the pain in my arms and shoulders started to subside. I have carried on like this every since, about 3 months. Now my dilemma is should I carry on like this as although not brilliant I can cope with my RLS as most nights I’m getting a reasonable sleep and am coping during the day. The gambling is still there but I have taken steps to make it nearly impossible for me to do this.
So would your advice be to carry on as I am or should I pester the hell out of my doctor and come off Ropinirole altogether. Just the thought of it turns my legs to jelly as it was hell on earth. Part of me is saying don’t rock the boat as I am coping, and who’s to say that by going through all that agony again any new medication would be better than what I have now.
It’s a real shame that we have to resort to asking complete strangers (very informed strangers I might add!) to help us rather than getting the help and advice from our own doctors!!
Thank you
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Scattypatty
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One possible strategy might be to continue your present regime for as long as it works. But as soon as it stops working out and you feel the need to increase the effective dose --- That is the time to engage reverse gear.
You need at that point to continue your tapering down journey, however traumatic it may be.
Opiates might be necessary to successfully get through this difficult time.
Thanks for the reply. Yes, that’s what I thought to do, just needed confirmation really.
Hi
I agree with Madlegs, that if the Ropinirole is currently working and without augmentation then there's no real reason not to continue.
Also, as he says, if there's any sign that it's starting to stop working THEN you need to get off it.
You don't have to just stop taking the Ropinirole though because even if you manage to withdraw from it you will still have RLS, so you will need something to replace it.
This is usually a alpha2 delta ligand, e.g. Gabapentin.
Unfortunately as I may have replied to you before, because you have Impulse Control Disorder, you are at risk of Dopamine Agonist Withdrawal Syndrome (DAWS). DAWS makes it very difficult to get off a DA, for some people, impossible.
If you do need to get off the Ropinirole, you need to get information about DAWS and take it to your doctor, better still a neurologist. I imagine it will be impossible for you to get off Ropinirole with co codamol, it is just completely inadequate.
It seems your doctor has underestimated the seriousness of your situation.
You were very helpful before and very knowledgeable so I really take on board what you say. If it starts getting bad again I will have to get off the tablets but hopefully I will be better prepared for it then, I certainly don’t relish going through it again though.
Many of us have been like you, year after you, biting the bullet and shutting up.
That's a bad idea with a condition that slowly gets worse on its own without getting a big extra push from a horrible drug.
Get help by engaging your doctor well-armed with information. It is difficult/impossible to do this alone, and it is not necessary to do it alone.
ncbi.nlm.nih.gov/pmc/articl...
This is an article on tapering. As you see, the patients are not expected to do this unaided.
I got off the horror-drug with an opioid, and it was not difficult - much easier than I thought. There is absolutely no way I could have done it alone.
The best solution is to taper off the dopamine agonist while slowly going on to gabapentin/similar, with the help of oxycodone or methadone to reduce/eliminate the withdrawal symptoms.
And we're not strangers, you know. We share a misery that few understand, recognize, or give a damn about.
I have just written a long reply to you, went and checked something else out and now it’s gone! How annoying, but I’m not going to type it all out again.
Basically I said that you had hit the nail on the head when you said that ‘I’m clearly not coping at all’. I can see that now and you have jolted me into thinking that I really should carry on fighting for the right treatment. So thank you for that and the attachments, I couldn’t open the first one but I’m sure I can look it up. Once I’m a bit more knowledgeable on RLS I will contact my doctor.
Were you on dopamine agonists or other meds before starting the LDN? I have heard of others who have had success with it. What dose did you start on and what dose do you take now?
I agree with all the advice you have received. I went through a similar experience when getting off Ropinirole. I was initially on 4mg but was augmenting ( even though I didn't really know what that was at the time). I reduced from 4mg to 2.5mg over about 5/6 months and it did actually improve some of the agitation symptoms. I stayed on 2.5mg for about another year but then realised augmentation was back big time. I discovered this site and with the help of the knowledgeable people on here ( big shout out to Pippins and Elisse).
I managed to get off it completely, despite the complete ignorance and lack of help from my GP. I was lucky that my MS neurologist ( who I contacted via my MS nurse) wrote to my GP instructing her to give me tramadol to help me through withdrawal. It was incredibly traumatic ( not going to lie)- but you know that, as you have experienced how difficult it is.
However, now that I've come through the other side, I would urge you to consider it again. The daytime RLS has gone and pregabalin and oxycontin control the night time RLS 90-95% of the time.
There are other drugs that will help you, if and when you consider trying again to get off ropinirole.
It is sadly impossible to get methadone for RLS in the UK. I hope this situation changes.
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