PMLS sufferer: 3rd week on 1mg Neupro... - Restless Legs Syn...

Restless Legs Syndrome

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PMLS sufferer

Gannet profile image
8 Replies

3rd week on 1mg Neupro patch and no noticable difference except for increased tiredness during the day and ocassional h/ache.

My wife tells me that the leg and arm movements do appear to have reduced since I started the patch but quality of sleep seems to be as bad as ever.

My doc says it's ok to have a few beers or a glass of wine when on Neupro. Anyone got any comments ?

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Gannet profile image
Gannet
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8 Replies
exhaustedfox profile image
exhaustedfox

It doesn't seem to matter what I consume. I am still knackered!

Tiredparent profile image
TiredparentRestless Leg Syndrome

Are you on any other medication or just that? Presumably your doctor has put you on 1mg with the plan of building up the dose? If not, perhaps you need a higher dose.

I can't remember how long it took for the patches to work for me but they have certainly made a huge difference. I'm on 3mg.

Best of luck!

cefndaniel profile image
cefndaniel

Alchohol makes my RLS worse.

Just one glass of wine makes my RLS worse. I have not touched alcohol for several years because of it, although a glass of beer seems OK once in awhile. Never wine or other types of alcohol.

well i can drink wine, and it doesnt bother my RLS, i drink white wine only, red gives me headache, just shows how we are all so different

CathyS profile image
CathyS

I don't know the difference between PLMS and RLS, but would think that if after 3 weeks you're not noticing a significant difference it's time to up the dosage. When I started on it I found close to 100% improvement with the second patch. I didn't realize how long it takes to have an effect (about 6 hrs. for me) and so I otherwise medicated the first time. If I put it on early enough, I am good for the whole night, using the 3mg patch. 1mg might not be enough for you - it isn't for me (I tried going to a lower dosage but that didn't work). Don't drink much, but have never noticed an effect from it when I do - but like niah said - we're all different! I think the patch is a miracle life-saver & hope you find a dosage that works for you. GOOD LUCK!

Gannet profile image
Gannet in reply toCathyS

Thanks Cathy. PLMS ( periodic limb movement during sleep) . I have no problem falling asleep or staying asleep. I don' realise it but the leg and arm movements are almost continuous while I am "asleep" . The result, according to my consultant and confirmed by the Polysomnography study is that the RLS movements result in me only getting approx 25% quality sleep. So 6 hrs "asleep" in reality only gives me 1.5hrs proper restorative sleep. Luckily PLMS sufferers do not show any symptons during the day.

I was on Mirapexin for a few months but felt that the side effects were not worth the limited benefit I gained.

I'm somewhat reluctant to go for an increase in the patch.

My wife tells me that the movements during the night do appear to be less but I can't say that this has resulted in me feeling any more energethic during the day. In fact, the opp. is probably the case.

Did you ever have the Poly study done? It really does give you a full A to Z analysis of everything that's going and I think every RLS sufferer should try to have it done.

All the best

Angierob profile image
Angierob

Hi Gannet!

I have PLMS too and was on the brink of despair until Dr put me on Ropinirole (Requip). I started on .25mg about 2.5 years ago and now have to take 3.5mg for it to work. I have discovered that this may be due to "augmentation", ie, the drug making the symptoms more intense, so I need to look into that. I've also been advised to get my ferritin levels checked - this I think is the level of iron in your brain. For us RLS/PLMS sufferers, it should be 100 or over. Finally, I find that anything with sugar or salt in it, or alcohol, will make the symptoms much worse, so I don't have anything containing that after 7pm. Hope that helps.

Angie

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