English newby with question :)

[Clareuk]

Hiya,
I've been diagnosed with RLS for around a year and i have just found out my Grandma had it as well but she also had parkinsons early so i was wondering if anyone new of any link between the two? i know that they do treat RLS with parkinson medication as this is what i have been on to stop the symptoms. Any help or advice given i will be thankful for as there isnt much help/support in the UK for it.
Thanks Clare
x

[Polar Bear]

Hi Clare, I am also living in the UK.

My understanding is that there is no connection between Parkinsons Disease and RLS/WED. And although we use a parkinson's drug for medication, we use it in a much lower dosage.

Which medication are you taking and are you getting sufficient relief from your symptoms.
As you are likely to be taking either requip or mirapex please ensure that your blood ferritin level is as high as possible. Doctors will accept a level of around 20 as being normal but us sufferers need to be up nearer 100. This makes augmentation while taking the requip or mirapex a little less likely.

The link in my signature to the RLS Medical Bulletin provides some very useful information.

[sue-e]

Hi,

I'm an English newby too, I've just joined this morning.

I agree, I don't know of any connection between RLS and Parkinson's Disease. I too use drugs which I think my GP said are for Parkinson's. I'm on Ropinirole and Gabapentin. They certainly work for me. I was taking Ropinirole and had to work on the dosage and it worked on its own for a while and then my legs were really bad again so I was put on Gabapentin.

I take 2 Ropinirole at night and 900mgs of Gabapentin and have slept really well - which I wasn't doing before.

Sue

[Polar Bear]

Sue, when you say you take 2 ropinerole each night, do you mean 2mg total.

I also take ropinerole. As my symptoms are 24/7 I take 4mg over a 24 hour day, supplemented with 200mg Tramadol.

[sue-e]

Hi Polar Bear,

Sorry, I didn't explain myself properly.

I take 1mg at 1pm then again at 5pm and at bedtime I take 2mg and can take more during the day/evening if I feel I need them.

I also take 900mgs of Gabapentin which help me sleep. I can only take them at night as I'm a childminder and can't risk falling asleep when the little ones are here

Sue

[Polar Bear]

Hi Sue, so you are taking a total of 4mg ropinerole daily. I think this is considered around the max daily for ropinerole for rls/wed. As I am also taking 4mg total daily that is why I use the tramadol to supplement. Trying to keep the dose of ropinerole from going up. Just as you are taking the gabapentin to supplement. At times there is still breakthrough and fortunately I have codeine 30/500 for a painful neck/shoulder and I save this for the evening and it helps with any breakthrough wed. Not exactly what the doc gave it to me for........ but it helps.

[sue-e]

Hi Polar Bear,

What a day! It's my day off work and I have to fit in all my other appointments on a Friday.

I can take up to 10 Ropinirole a day if necessary. I try not to. I was told if I take too many I will feel/be sick.

The Gabapentin really help me sleep. I didn't sleep well for such a long time. I also have Fibromyalgia so get pain all over the place lol.

Sue

[Polar Bear]

I also have fibromyalgia, weeded the garden yesterday and so I'm just about wiped out today. That's how it goes.

I am rather concerned that you can take up to 10 ropinerole tablets per day. Are these 1mg tablets ??
Someone please correct me here if I am wrong.... but I don't think I have ever heard of a permitted dosage of up to 10mg ropinerole daily for RLS/WED.

Have you ever looked at the letters page on Dr Buchfurer's Southern California site. There are hundreds of letters with his responses and there is a lot of information to be gained. Also he will respond to email questions about RLS/WED. Dr B is a renowned expert in the field of WED and author/co-author of several books on the subject. Many of us have one or more of his books, I certainly would not be without mine.

My understanding of ropinerole is that once a daily dosage reaches a certain point (perhaps 5mg ???) that with regard to WED any dosage above this level serves no purpose and I believe that I gained this information from either Dr B's site, or his book. Unfortunately I have lent the book to someone and can't check this.

I hope someone will speedily either correct me/ or confirm my thoughts on the permitted dosage of up to 10mg ropinerole per day.

[sue-e]

My Ropinirole tablets are 0.5 mg. I take 2 3 times a day at the moment because I have the Gabapentin at bedtime. I was taking more before the Gabapentin.

My fibromyalgia isn't too bad thankfully, I still work 4 days a week but it's a hard job and it does make me very tired. I'm certainly not ill enough to get DLA so I have to work as my husband has early onset alzheimer's disease.

I hadn't heard of Dr. Buchfurer. I will google him. Thank you.

[Polar Bear]

Whew.... I am glad to hear that your tablets are .5mg.
Forgive my concern, but I had thought that they might have been 1mg pills.

http://www.rlshelp.org/
This is the address of the Southern California site. If you scroll down you can click onto the page numbers, which are in blue, in order to read patient letters and responses. There is also lots of other very reliable information on the site.

The email contact for Dr Buchfuhrer is
somno@verizon.net

If you were to email him with a question it is most likely that your question and his response will eventually appear on the patient letters section.

[sue-e]

Thank you for your concern Polar Bear, it's very nice of you. It was my fault, I wasn't clear.

Thank you for the links too, I'll have a look at those today. I could be sitting here a while lol.

I haven't even had a chance to have a good look around here so I must do that.

Sue

[sue-e]

Must apologize, I didn't say hello and tell you a little bit about myself.

I'm Sue, I'm 60 in August I'm originally from West Yorkshire, moved to London in 1981 and am now living in Cambridgeshire.

I'm married, Steve has been in a home for the last 7 years because he has Alzheimer's Disease. I have 2 grown up sons. I enjoy doing family history and card making. I work as a Registered Childminder.

Sue

[Polar Bear]

Sue, Very sad that your husband has early onset alzheimers. My mother had it and I know how hard it is to watch the one you love just disappear in spirit.

Here's hoping you find the Board and the links informative.

[sue-e]

Thank you Polar Bear,

It is very hard to see a man who worked hard and had so much going for him as he is now.

He was diagnosed when he was 52 but obviously was ill quite a long time before the diagnosis,

Sue

[badnights]

Sue, and Clare also if you are taking one of the Parkinson's drugs, this information may be useful for you:
I echo Polar Bear's concern about the ropinirole dose, Sue. It can be a nasty drug for those of us with WED/RLS, especially if our ferritin is low. As far as I know from my reading, the maximum recommended dose for WED/RLS is 4 mg. Your current regimen seems to be working for you, but you should be aware of the potential dangers so that if they happen, you and your physician will recognize them and be able to correct the problem.

Augmentation is a worsening of the WED/RLS symptoms, caused by the Parkinson's drugs. It does not happen in everyone, it happens more often in people whose blood ferritin levels are low, and is more likely to happen the longer you've been taking the drug and the higher the dose. When it happens, the drug still works for a while after it's taken, but it wears off faster, and/or symptoms start sooner the next day, are more intense, spread to other body parts (eg. arms), or start sooner after sitting or lying down. For me, it got to the point that symptoms began in arms and legs in the early morning, I had to get out of bed when they became unbearable, I had to stand up to work, and I was literally running on the spot by evening, incapable of accomplishing anything until the next dose kicked in. Then I had a few hours of relief.

So augmentation is not something trivial. Sometimes it's hard to tell if you're augmenting or if your WED/RLS is simply progressing. The dose of a Parkinson's drug can be raised once or an additional dose can be added earlier in the day, to counteract the earlier onset of symptoms, but if teh augmentation continues to worsen, there is general consensus that adding further doses of the drug will just exacerbate the problem. The only solution then is to get off the drug, and onto something else, at least until it clears out of your system. Some people can then begin again at a lower dose, supplementing it with a different class of drug in order to keep the dose low, so as not to trigger the augmentation again.

I have described augmentation probably in more detail than you want ! but it's an important thing to be aware of in case it happens to you. It's a good thing you're supplementing with gabapentin and were able to lower your ropinirole dose that way. If your doctor needs to know more about augmentation, bring him/her the document you can download from Polar Bear's signature. You can also refer him to an article in the journal Sleep Medicine by Allen and others, vol 12 (2011), p. 431–439 ("Restless legs syndrome (RLS) augmentation associated with dopamine agonist and levodopa usage in a community sample").

Another thing to do is to get your serum ferritin levels checked. Ferritin is a protein that transports iron, though it's not usually measured in a standard iron workup. But it's important for WED/RLS people. A subset of us tend to have low levels, which reflect low levels of iron in the brain, and some of us can raise those levels by taking oral iron supplements, and thereby see a significant improvement in our symptoms. It's recommended that WED/RLS patients have blood ferritin levels of 100 ng/mL or more (people without this disease are fine at only 20 ng/mL). Maybe ask your doctor about getting it checked. You can refer him/her to another article, Sleep Medicine vol 10 (2009), p. 611–615 ("The severity range of restless legs syndrome (RLS) and augmentation in a prospective patient cohort: Association with ferritin levels")

I hope this information is useful and I didn't bore you to death