I’ve not been able to post earlier as I was without Internet access for three weeks – what did we do before we had it!!!
I am now down to 0.25mg Ropinirole. I’m glad I didn’t keep reducing when I was coming up to the concert (which went well enough!). But reduced that night and again six days later and will stop after a further five days so the last dose is tomorrow night!.
I saw the neurologist. I was somewhat disappointed. His manner was not exactly warm or caring and, effectively, he implied that I knew all I needed to know and he could tell me nothing more.
The only strange comment (and I’m yet to receive his letter to know if I really did get this right) is that DAs are one thing but dopamine itself might help. Has anyone tried dopamine (Parkinson’s drug)?
However, he suggested that, as tramadol was not having the helpful effect I’d hoped for, I could use Oxycodone. I saw my GP and he prescribed both Shortec 5mg, the immediate release capsule lasting for 4 hours and Longtec, the prolonged release tablet to last 12 hours, commenting that people can react differently to them.
Longtec worked wonderfully the first night but, since then, only tends to last 5-6 hours. After a week I’ve settled down to taking a 5mg Shortec at night, plus 30mg codeine and this seems to be lasting through the night and giving me really good sleep. However the RLS now comes on in the afternoon if I’m not constantly active so yesterday I took a Longtec at 3pm and a Shortec plus 30mg codeine at 9.30pm and that worked really well. I don’t really want to get up early in the morning but, as I’m retired, I don't always have to do so!
My GP is still being fantastic. I still can’t decide whether to try Gabapentin or Pregabalin. I’d originally thought Pregabalin as I don't have pain but just the constant urge to move my legs, arms, body, but wonder if trying Gabapentin first might be better. Any thoughts?
Hope all your preparations for Christmas are going well.
RosieRow
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RosieRow
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The long term oxy should last more than 6 hrs. I take Oxycontin, which gets me 9to 10 hrs. I know that triggers will dramatically shorten that period and I have to top up with paracetamol/acetaminophen.
Triggers for me would be alcohol, sweeteners,sugar and a multitude of other substances.
Opiates are the ultimate med for rls, but they are not a magic potion- otherwise I could be enjoying a pint at Christmas, and the brandy snow. And my precious collection of liqueurs, collected from all over the world 😥 --But I suffer noisily 😂.
Be very careful how you treat the opiods- they are a precious resource and our last line of defence in the rls fight. Husband them carefully.
I don't know if Longtec and Oxycontin are the same formulation- it may be worth trying different ones. And watch the triggers. Seriously!😛
I was hiven Oxynorm in hospital for pain relief. Did not do anything for the pain and I had rls for about 20 hours after brain surgery. It is on my 'never take again' list along with phenergen
I appreciate your input. Alcohol is no problem - I rarely have any alcohol at all and wouldn't have it at the same time as opiates. Sugar and sweetener are a normal part of my diet - no matter how hard I try, I really can't get off them, but I have cut down quite a lot. Maybe I need to try harder, at least for a while to see if it makes any difference.
I take seriously your advice to husband my use of opiates and am trying hard to keep them to an absolute minimum. Shortec and Longtec are both Oxycodone hydrochloride, the first being immediate release capsules and the second prolonged release tablets. I see the GP again on 28th so I may ask him about a different make of the sustained release ones instead of Longtec. But I was warned (and as we all know from bitter experience) we each react differently to different medications and I was told that even with their different forms we react differently!
However, I have just had a letter from the neurologist which is much more positive sounding than his attitude at the time. He has outlined the process we talked about and what he recommends:
Consider Pregabalin at 50mgs per night, increasing to a max of 150 dialy
If that doesn't work try Gabapentin 100mg building up, as necessary to a max of 1,200mgs daily
If both of those fail consider Levodopa in the form of Madopar 62.5mgs at night and increasing as required and tolerated to 250mgs.
He also says he has not arranged to see me again but would be happy to do so if it is needed.
So that's all good news and helpful to the GP and to me.
Glad you are having some success and are approaching the end of the dreaded ropinirole!
Couple of queries from the comments your neurologist made.
1)Dopamine drug - one of these is ropinirole
and is used to treat Parkinson’s, albeit different dosages.
2)and this is quoted from the RLS website -“Levodopa may be recommended if you only have symptoms occasionally. Continuous use of levodopa can make your symptoms worse. It’s therefore only taken once the patient feels the symptoms of RLS coming on” . Not sure why he would recommend this when you have already augmented on one dopamine drug?!!
Anyway I’m still doing well on 150mg of Pregabalin, I don’t have pain either.
Good luck and have a lovely restful (!!!) Christmas 🎄
The consultant said that a genuine dopamine drug is different from the dopamine agonists and you shouldn't augment on it. But the quote you've put is quite interesting - and thanks so much for the warning. I would need to investigate further if this really became the final alternative. I wondered why no-one else was saying they are on Levodopa, and perhaps that is because it isn't of use and could be counter-productive!
Not a problem. I think it was the first line of defence some years ago but went out of fashion because of the quicker rates of augmentation. Not been recommended for some time so not sure where your neurologist is coming from!!
Also I don’t understand his comments about dopamine and dopamine agonists but I’ll leave someone with more knowledge than me to answer that one!
Sorry for quick reply, I’m bouncing around on the bus on the way home from work 😅
I am puzzled too on what that doctor means by dopamine and dopamine agonists. Does it mean eating foods to increase dopamine,? And its not we dont have enough dopamine, we do. Its just it doesnt get transported to where it should go, (simple explanation. )
I've been looking it up and you're both right - 80% of people augment on levodopa - so that is definitely not an option! It does make one worry about how up-to-date consultants are on things like RLS. Thank goodness you questioned what I'd been told. I can pass that on to my GP.
Rosie, 0.25mg is the maximum dose of ropinirole advised by top specialists at the present. So you are still pretty high in dosage.
This is just a warning that the last lap may not be too easy. If it is too tough, go down to 0.125mg.
Without opioids, you may not manage it, so do not consider stopping opioids for several weeks. Most of us are quite venerable in age, so we clear drugs slowly.
Are you sure you don't have your meds confused? I thought the latest max for ropinirole was 1mg, down from the previous max of 4mg. .25mg is the smallest dose they make.
You are certainly fortunate your GP prescribes you the Oxycodone at that dose. Mine will only give me 5/325, 2 a day. I have cut myself down to 1/4 to 1/2 tab a day and suffer. I have hemp CBD oil. Going to try it again. I was not able to tolerate any of the drugs the Neurologist prescribed.They really don't seem to know what they are doing. I have read the latest research and it is saying Adenosine is the culprit behind RLS.
The NEW recommended highest dose for Requip (ropinerole ) as by what the RLS experts say is now only 1mgs. The doses that all doctors have will be still 4mgs as the highest dose. Because of augmentation and how many have/are suffering from it, the RLS experts are the ones who are saying keep the dose as low as possible to try to avoid augmentation. They also recommend once you reach 1mg and it stops working then to wean off it and try a different class of med and not to increase the DA. Most doctors dont know much about augmentation or how to deal with it, they just increase the dose. Also once augmented on one DA then its advised not to try another DA, another thing that most doctor do not know about. Mirapex (pramipexole) are the tablets that Parminter got mixed up, they are recommended by the RLS experts to take no higher than 0.25mgs they can be cut in half making them 0.125mgs.
Hello Elisse - thanks so much for that clear explanation - most of which I knew but certainly not the recommendation about only 1mg of Ropinirole. I stabilised at that level initially but after six months I augmented but didn't know that was what was happening. It was only later that I got onto this forum and started a crash course of discovery about RLS. I wonder what other drug might work for me but hope that Pregabalin might work.
My GP has also been educating himself on augmentation and is quite keen to learn what he can as I am his 'worst case' RLS patient! I am concerned but not surprised that the neurology consultant has recommended Levodopa as the third option if Pregabalin or Gabapentin don't work. I shall explain to my GP when I see him next week that this is not an option as far as I am concerned. I didn't have a good night last night and early this evening I was driven to distraction by the physical state I was in - a whole body urge to move and yet not being able to keep my eyes open, yet, of course, not able to sleep either. I had to go out this evening (I'm a minister and needed to help with the carol service - in the pub - which went really well), so had to take Oxycodone or I wouldn't have made it there. But, having come this far, I will get through it!
I am so grateful for all the people here who help and encourage.
Someone on some site said they lie on their stomach and roll hips from side to side to get maximum relief for minimum effort and I find this works when exhausted.
Given your particular circumstances, and all the bother you have had with prescriptions, I would suggest emailing Dr Buchfuhrer on the rlshelp.org site. You will find a tiny yellow button on the page- just click on that and you'll get into the email. Keep it short and to the point. He usually answers within 48 hrs.
If you use the search button there, you will get directed to anyone else who has had a similar experience. Therr is also a very comprehensive list of all treatments for rls. Well worth printing and giving to your new neurologist. 🤔😆
Hello Madlegs - thanks for the encouragement. I will see how the next few days go - have had two dreadful episodes in the early evenings when I've had to take Oxcodone or else I really cannot function and almost don;t know what I'm doing. I've also had to take another tablet at bedtime and one in the early hours. If this situation doesn't improve by after Christmas Day I will then have time to compose a brief email to Dr Buchfuhrer. I hadn't thought of doing it before, but maybe this would be a good time to do so. But I did only take my last Ropinirole on 19th, so it's still early days.
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Under-informed medical profession..again 
My doctor is STUPID, STUPID, STUPID !!!
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