Madopar - does anyone take it?

[Jeverleybane]

I was on Pergolide for 18 years. Wonderful. Cured my restless legs until they took it off the market. Now my neurosurgeon has given me Madopar which doesn’t touch the problem. Help!

[Stumpy45]

Hello. Yes I take the Madopar, (Co-Beneldopa),12.5mg tab 3 x daily in conjunction with 1mg Requip (Ropinirole) 3 x daily. But as I take other medication for pain, not sure of the contribution to relief they give. Other than. When first prescribed just this regime with 3 Co-codamol worked quite well for around 6 to 8 months. I had a chat with my Neurologist and we upped the dose to 2 x 12.5mg but just twice daily. Successful again for some considerable time, but at the moment my RLS is progressing to just about whole body status, where not a great deal helps during those attacks, they are quite infrequent, thank goodness. But back to your question.

What I have noticed though. If I ever run short of Requip, doh!! and I try doubling up on the Madopar to compensate, it does not help in quelling RLS. So, on it’s own, for me not my choice of front line drug.

It’s main purpose I believe is in helping treatment of Parkinson’s disease.

[LotteM in reply to Stumpy45]

Stumpy, have you considered that you may experience augmentation? The number and combination of medicines you take and their amounts are worrisome in that respect. Please do some reading to inform yourself (start on the rls-uk.org website, following by search HU using the search bar) and come back if you have questions. I hope I am wrong, but I fear I am not.

If you identify with the signs of augmentation, please load yourself with relevant info and discuss with your doctor.

[Hidden]

I have no experience of Pergolide or Madopar, but what I've read does suggest that Madopar is not going to be very effective for RLS.

Firstly, a matter of semantics. There is no "cure" for RLS. The pergolide only controlled your symptoms. Although you might think this a trivial comment, in some cases it can cause significant misunderstanding. It is known that quite often folks newly diagnosed with diabetes start on medication which lowers their blood suger. They then think they are "cured" and stop taking their medication.

This demonstrates that if you have an incurable "condition" such as Diabetes or RLS, it is important to carry on taking medication. In your case this was pergolide.

So, secondly, if the medication is no longer available, then I'd say it's important to carry on taking another medication with the same action.

Pergolide, I'm unfamiliar with, but I read it is a dopamine agonist. Madopar isn't.

Madopar' s action is to increase dopamine levels in the brain to treat Parkinson's disease. Parkinson's disease is caused by a lack of dopamine in the substantia-nigra, a specific part of the brain.

However, RLS is NOT caused by a lack of dopamine. RLS is associated with a failure of dopamine receptors. Simply put, the dopamine is there, but it isn't working.

Hence in RLS, a medication used to increase dopamine levels will not work particularly well because it doesn't affect dopamine receptors.

Medications which help the receptors work better include dopamine agonists. E.g. Pergolide.

It seems logical then to conclude that you need another dopamine agonist e.g. Pramipexole.

Another matter of semantics, possibly, but you say "neurosurgeon" , implying someone who treats neurological conditions surgically. Alternatively, "neurologists" use medical treatment. If this is not just a misunderstanding about correct terminology, it might be you are seeing the wrong specialist .

You will read posts on here that witness how ignorant doctors are generally about RLS. This might include specialusts, particularly when they are surgeons with a good anatomical knowledge, not physicians with a good biochemical knowledge.

To cut a long story short, you may be seeing the wrong specialist. You need to see someone with expertise in treating RLS. Then, hopefully they will not prescribe something inappropriate i.e. that's not going to work!

Unfortunately, a further complication, you will read on here is that there are other medications used for RLS and also there tend to be problems with them all.

Pramipexole can cause problems in the longer term, but is often the first line treatment for RLS.

A good source of information about managing RLS is

rlshelp.org

this site has a good international reputation and I think you'll find that medications that are recommended for RLS do not include Madopar, Sinemet, Levodopa etc which only increase dopamine levels.

You can even email them and you will get an answer.

(Click on the yellow button)

[Jeverleybane in reply to Hidden]

Dear Manerva

Thank you so very much for taking time to reply to me. I really appreciate your feedback. Actually I did see a neurologist not a neurosurgeon at St George’s Tooting. He was a consultant. At the appointment he also had another newly appointed consultant with him and another visiting neurologist. They both agreed with his diagnosis. I am now convinced he knew little about rls and I am determined to come off Madopar. I went to my health shop (luckily we have a brilliant one just close by) and I have bought Uncle Bed’s muscle rub 30mg pure CBD which I rubbed on my legs last night and which really helped the itching, also Fokate 400mg, Magnesium 300mg, vitamin C 1000mg, and calcium. I only took one Madopar CR (Levodopa 100mg/Benserazide 25mg) last night instead of two and no melatonin sleeping pill and I had a great night’s sleep. I’m seeing my doctor on Monday.

I have to add that I also have sleep apnea which doesn’t help and I wear a CPAP mask at night which pushes air into my lungs (I look a cross between Hannibal Lechter and Dumbo! Not great for the sex life and I got married last year for the last time - I’m 67).

This neurologist has written to my doctor to say if the Madopar does not work I should discontinue it and try a low dose of Pregabalin - 24mg to start increasing if tolerated. If not tolerated then Codeine Phosphate 30 to 60mg.

Not sure about these last two but I’m determined to get off the dopamine agonists.

[Hidden in reply to Jeverleybane]

Unfortunate that although you saw the right specialist, they were apparently ignorant about RLS. It also appears that they were ignorant about the NICE (National Institute for Care and Health Excellence) guidelines for treating RLS which don't recommend Dopamine for RLS. Perhaps they've read them since.

Pregabalin IS an alternative first line treatment for RLS and it does work for some people. So It will be worth trying that.

Codeine phosphate is an opiate and opiates can be used for RLS when other things fail. (Second line treatment).

Another alternative, which again is first line treatment, (the things you try first) is a dopamine agonist, pramipexole, ropinirole or rotigotine. Since the Pergolide, (a dopamine agonist), worked for you up until it was taken off the market it would have seemed more logical to prescribe one of these, but there may have been reasons for this.

These are the NICE guidelines

cks.nice.org.uk/restless-le...

I got married 3 years ago, for the last time. If this one fails I won't have the energy to try again. 68 at the end of this month.

Luckily no CPAP mask to get in the way.

[rls_optimist]

Madopar contains levodopa, which is most definitely NOT a good drug to be taking for RLS. All the RLS experts recommend staying away from it. That's because it has the highest rate of augmentation of any medication for RLS, by far. (Some estimate that as many as 80% of people will develop augmentation on levodopa.) Many doctors, such as yours, do not know this. So you need to arm yourself with your own research. If you're unfamiliar with augmentation, here is a link to a good article on it, and how to deal with it:

sleepreviewmag.com/2015/02/...