Anyone else been prescribed Co-beneldopa for RSL?

[Speedracer]

Hi all, I hope you are all as well as can be. As per the thread title has anyone else been prescribed Co-beneldopa for RLS, as I have just been. I have been trying to get by without extra meds, as I take enough for my fibromyalgia & other things, but it was proving to be a fight I couldn't win so after checking with my doctor she actually prescribed Ropinirol, but my chemist said they had tried to get this drug for me but it was discontinued.

As luck would have it my own doctor had left early so after a quick consul with another doctor at the practise he prescribed me the Co-beneldopa and asked me to give it a go.

Has anyone else here used it and what are your experiences with it if you don't mind sharing?

Many thanks,

Brook.

[Hidden]

Ask the chemist for your prescription back and go to a different chemist, not heard amyone say roponerol has been discontinued x

[Speedracer in reply to Hidden]

Thanks for your reply P1ps, I can't do that as it was all changed on the day, & it is difficult to get out at the best of times for me.

[Pete-1]

Co-beneldopa is just the generic form of Madopar. Madopar contains Levodopa and Benserside which keeps the Levodopa in the blood stream until it reaches the brain. If Levodopa is taken on its own much of it gets absorbed into other body tissue so very much bigger doses are needed to get the levodopa where it is needed, that is, the brain. Large doses are rather likely to make the patient sick so being able to take a smaller dose helps prevent that. Sinemet is the same except that the Benseraside inhibiter is swapped for something different that does exactly the same job, i.e. Carbidopa.

I take Madopar for Parkinson's disease (PD) but I don't think it helps controll RLS. I have RLS too. I also take Pramipexole (Mirapex, Mirapexin or Sifrol) for my PD and if I stop taking the Pramipexole I find I get quite severe RLS with twinges in all four limbs simultaneously every 15 or so seconds.

So only the Pramipexole (a Dopamine agonist) seems to keep a lid on the RLS. Perhaps if I stopped taking the Madopar my RLS would re-emerge too, who knows?

[Pete-1 in reply to Pete-1]

I see in wikipedia that Ropinirol's patent expired in 2008. So the pharmacist who told you that it `wasn't being made any more is not entirely truthful. Only the expensive version has been stopped. A cheaper generic form whatever its called will be available instead. A trip to your GP to ask for a generic version should solve the problem. I believe that the pharmacist is obliged to supply exactly as the GP has prescribed and so can't supply the generic form without a prescription for it.

[Pete-1 in reply to Pete-1]

If you end up with a prescription for Pramipexole (Mirapex etc) then be aware that stopping taking this drug is difficult and unpleasant. Search in HealthUnlocked for DAWS (Dopamine Agonist Withdrawal Syndrome). A search of the whole web may yield more - perhaps.

However unpleasant it is it is still better than getting no sleep.

[Hidden in reply to Pete-1]

Yes Iv been there done that COLD turkey horrible ident it Side affects Doctors don't say much about that do they Anyway there ain't no pill to cure RLS There is no cure RLS is still a mystery your only used as a gummy pig to see it works for you Then you turn into a zombie

[Speedracer in reply to Hidden]

Zombie is a very good description of me at the moment Erona.

[Pete-1 in reply to Hidden]

Going Cold Turkey caries the risk of NMS (Neuroleptic Malignant Syndrome). As this is potentially fatal it is recommended that you wean yourself of this and other PD drugs very slowly, Take weeks rather than days.

[Hidden]

I would steer away from beneldopa as it contains levodopa which soon causes augmentation. Get your ferratin iron checked it needs to be right at the top of the range not just normal x

[Speedracer in reply to Hidden]

I had to look that up P1ps as I hadn't heard of it. Sounds nasty but I haven't felt like that so far, but I will keep an eye on it.

It is worth saying that both the doctors who prescribed the drugs were not my regular gp as she was on holiday, but I will be getting an appointment to see her to discuss it all when she returns to the surgery.

Many thanks all.

[Hidden in reply to Speedracer]

Yes augmentation can happen with all the dopamine agonist type drugs but levodopa seems to be worse.It wouldnt happen straight away could be months or years.How did you go on with it is it working?

[Speedracer in reply to Hidden]

No I don't think it is. I have only had one really bad night with RLS but in the week or so I have been taking it I am finding it even harder than normal to get any sleep. I am awake for so many hours that I don't so much fall asleep as pass out! Even then it is only for a few minutes, and if I do manage an hour or so sleep in the day it is almost guaranteed I will be awake all night.

[Pete-1 in reply to Hidden]

I don't remember any cases of augmentation with Levodopa based drugs only the agonist ones. But then again I don't recall Levodopa based drugs being given for RLS only PD

After a number of years of Levodopa it is commonly reported that (PD) patients get dyskinesias and or hallucinations. and to a degree the Levodopa becomes less efficacious but it certainly does not make PD worse. Not as a whole anyway.

[Cajunfilly]

I am on Ropinirole, generic for Requip. It works on my RLS. It also helps me sleep. however, since it takes 2 hours to kick in and lasts only about 4 hours, I have to take one tablet at 8:30 pm and then another when I go to bed around 10:30 pm. I still wake up frequently at night. I have another problem that Ropinirole also relieves that I haven't heard about from others. In the afternoon, while seated, the muscles in my leg/legs start to tighten or knot up and begin to jerk. Sometimes my whole body jerks. I have to stand which completely alleviates the problem. I thought it was RLS, but doctor said that RLS only happens during the night and this was something else... It is not sciatic because I do not have shooting pains down my legs. The muscle in my butt around the nerves are tight and tender so when that is relieved so is everything else. Is it tendonitis in my butt or what? Whatever it is, it is miserable too especially when traveling when I can't stand up.

[beady3 in reply to Cajunfilly]

I am on Ropinarole 5mg a day,I have 1at one 2at five and 2at nine o clock they make me sleepy,the doc. Who told you rls only happens at night is bonkers I have mine any time of day and the pain is so bad sometimes it brings me to tears The only relief I get is to walk about when I get it ,then your back is ready to break. The story just goes on. Beady 3

[connie50 in reply to Cajunfilly]

have you tried taking tramadol this seems to work for me

[Speedracer in reply to connie50]

I already take Tramadol for my Fibromyalgia Connie, 200mg 2 or 3 times a day depending if I need the extra one!

[Hidden]

Anyone who has meds that are not working as well. needs to wonder if they are having augmentation if taking any dopamine agonists. Especially if you have been having to up the dose to get relief. The higher the dose the worse the RLS symptoms will get. The highest dosage for Requip (Ropinerole ) is now recommended as only 1mg. No point in keep suffering taking the same med if its not giving you relief.

[connie50]

hi Brook you say that your chemist says that repinarole as been discontinued what a load of tripe this is one of the best meds you can take for RL if taken in moderation its like any other dopamine drug, but what your chemist is saying is that repinarole is no longer available is a load of rubbish. Have you tried another chemist?

[Speedracer in reply to connie50]

I suspected as much to be honest, & no I haven't tried another chemist. I am going to see out the co-beneldopa & then see my own doctor when she is back from her time off & take it from there.

[connie50]

what your chemist is telling you about repinarole is a load of rubbish

[Speedracer]

Hi all, just thought I would bring this thread up to date. I finally managed to see my own doctor and outlined what had happened so far. When I got to the bit about Ropinirole being discontinued at my chemist she rang them and found that they were incorrect of course, so I was put on it at the start of this week, after finishing off the previous prescription. What I would say about the Co-beneldopa is that during the month I didn't have any violent episodes of RSL, so insofar as that goes the sort of worked, but getting any sleep at all was nigh on impossible, just 20 minutes here and there.

Too early to say if the Ropinirole will work but I will update the thread with an answer is anyone is interested?

[Hidden in reply to Speedracer]

Hi there Speedracer, we certainly are interested! Thanks for updating us, glad you have now seen your own doctor and got the chemist sorted out! If the Ropimerole is going tonwork it will usually work from the start so dont suffer on with it if it is not doing its job.Maybe try mirapex next? The lack of sleep is dreadful I really empathise with you on that.I hope you find something to help you soon, do let us know how you go on.best wishes ..kim

[Hidden in reply to Speedracer]

Just a tip-sometimes replies etc can go unnoticed in older threads so just a suggestion you put up a new post when you let us know how you doing with ropinerole