Well, I've done the first eight days and it's been better than I had imagined. Last Monday night I reduced from 1.5mg Ropinirole to 1.25. I increased the codeine to approx 37mg - cutting a 15mg in half to go alongside a 30mg. Symptoms were worse in the evenings, but only occasionally what I would call over bothersome. usually a walk around and my usual running 200 steps on the spot would ease it. I found I was getting less sleep than usual, but sufficient to feel I'd had enough to keep going really well.
Last night I went down to 1mg plus about 40mg codeine and that, too, was OK though I'm yet to go through a day following that reduction and I don;t have anything to 'keep be going' this evening apart from essential computer work to prepare something for next Sunday, so wonder how that might turn out to be. Last night I got to sleep well before 11.30pm, awake at 2.40, 3.40 and 4.40 but each time got back to sleep again, even the last time, which is amazing as that would normally be when the leg movements would 'kick in'. Instead I slept/dozed well until 7.30am!
It seems a strange thing to say but, apart from the evenings, symptoms seem to be better!!!
At the moment I envisage carrying on like this until/if I feel the need to increase the codeine but I'm hoping I'm still way off needing to try the Tramadol so that I will have it for the tougher time at the end. However, I do wonder how that might be as I have a tendency to either over-react to medication of all kinds, going hyper on them (including paracetamol), or them having no effect after the first time. But, let's cross that bridge when/if I come to it. One day at a time!
So, bright news for me - and I hope others of you, especially if on the withdrawal route, find the courage and determination to continue. And for me, the sky is blue, the sun is shining and the trees are still a wonderful autumnal gold though more of the leaves have fallen (I'm in SW England) - wonderful!
RosieRow
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RosieRow
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First of all, I have a neurology appointment on 6th December. If everything goes according to the plan, I will be halfway through week 5 of my withdrawal process, and on just 0.25 Ropinirole ready to finish on 10th December. At least, that's the theory. What happens in practice we will have to wait and see.
But that means they will hopefully be able to guide me and my GP with what to do next - IF they are a good unit for RLS - and I've not been there before.
My understanding gained from this forum is that I could do any of the following:
1. Start Pregabalin at an appropriate moment once the effects of Ropinirole are out of my system. I would hope that might work for me but I have never used it before.
2. Stay on the codeine for a while IF I have managed the withdrawal with just that.
3. However, I rather suspect symptoms will get worse as I wean off the DA so I may well be on 50mg Tramadol by then, always assuming it works for me, or a combination of Tramadol and Codeine. So I could stay on whatever is holding the symptoms at bay for as long as is though sensible. Some others have done that for up to two years and still been able to change off it easily. But, I never know how I will react to any medications and Tramadol is an unknown for me!
All I know is that I am determined to get off Ropinirole and hopefully be able to cope with anything but a DA. The thought of getting up to a maximum dose of a DA and then needing to withdraw is a very scarey prospect so anything is better than that route.
I hope this gives you some ideas to work on. But do look at other posts - so many people's stories have helped me to come up with what I hope is the right course of action for me.
I went through withdrawal from Pramipexole four weeks ago and it was hell for about 10 days. This was after gradually reducing the dose over four weeks. I went on to Gabapentin one pill of 300 mugs but this wasn't enough so I got the doctor to double this to two pills of 300 each, one am and one pm. I am so much better and usually have no RLS during the day. I have a routine in the evening, especially if I feel an attack coming on. I go for a walk of about one mile, have a shower with hot, cold, hot, cold water on my legs. I then massage them and rub in some special RLS cream or magnesium spray. My nights have been much better with 6/7 hours sleep. OK this is broken and I wake up every two hours or so but after a ten minute walk around home I go back to sleep. Whether this is because I cool down or exercise, I have no idea but it makes the nights tolerable. I hope to extend the sleeping hours eventually. The only extra pills I take are two paracetamol on going to bed. Hope this helps.
I'm glad you got through it - and so shall I! Thanks for all the tips. Magnesium oil doesn;t work for me - or it didn't seem to, but I may try it again.
I too find the hot and cold water quite helpful - particularly the cold - so it might be worth trying. I forget if you have had your serum ferritin checked. It is helpful to have it over 100. It won’t do much for you during withdrawal but afterwards it might help with symptoms. My legs improved a lot with iron.
Thank you - maybe I should try the cold! Yes, I had my serum ferritin checked and was bowled over when I heard it was 189 since I've spent most of my life being on the slightly anaemic side! So I will ask neurology for a re-test as I understand that sometimes it can spike because of things like inflammation - and see if there any other levels that might be adrift - I presume they can test for magnesium or B12, or whatever!
Thank you RosieRow for your detailed answer. This is a good guideline when I talk to my doctor if and when to stop Neupro. It shows a way to get to another and hopefully better route.
Such wonderful news...can i ask if your gp prescribed the codeine and Tramadol for you ? I have had an awful time with my gp so im hoping that alot of them are compassionate to our needs as RLS suffers in the UK
Yes, my GP has taken everything I've said, admitted that I know more about the condition that he does and that I'm his 'worst case'! He willingly prescribed both codeine and Tramadol for me the first time I asked. I was expecting him to say he wouldn't give me Tramadol but, though he wrote asking for advice on medication from the neurology department at the hospital, they don't do that any more, so he's accepted my research. When I augmented the third time I started the withdrawal and he's fully supporting me.
I was on codeine before he switched me to Ropinirole (because he said it would help with sleep) and I willingly took it. I have to say, it works well for me on all counts - until, of course, I augment. I decided to do the withdrawal now rather than take yet more Ropinirole and face an even worse withdrawal later. I had a bad evening yesterday with rotten RLS from 6.30pm and not such a good night but this evening has been much better so I'm hopeful of a better night's sleep very soon!
I think I am very fortunate with my GP - he listens - and he's done some homework, showing me a paper he's read about augmentation (which he's hiding from the nurses in case they think it's about breast augmentation). So he even has a wonderful sense of humour and a great bedside manner when you're really poorly. I couldn't ask for a better GP, so I'm very blessed. Changing GP in the UK isn't easy so I feel for you and everyone who doesn't have the support and understanding of their Dr.
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