RLS in my shoulders

[PNC]

My RLS problems are primarily in my shoulders and arms. My legs will occasionally be a problem, but my biggest problem occurs with my shoulders. I have been taking Mirpex for about a year now and it seems to help. I have to take it at least 2-3 hours before bed. If I take it right before I lay down, it doesn't seem to help.

Does anyone have their RLS in their shoulders and is this as common as it is in the legs?

Thanks-
PNC

[jumpyowl]

Does anyone have their RLS in their shoulders and is this as common as it is in the legs?

I think the legs are the most common locale-s for RLS. Even the moniker suggests that.

It is rather significant that Mirapex does help. And it is interesting (unusual) that you have to take it 3-4 hours early to be effective.

Now these are the out-of-the-main-stream bits of information I am also looking for on General Topics/ORP thread!

Have you had a sleep study, i.e. polysomnogram taken of you?
If you do tell them to wire up your shoulders not only your legs.

[Gizmo]

Well this is my first time ever on here and not really sure how to even log on but hey - doesn't matter.

It is good to hear that there is others that get RLS in places other than Legs.

I have had it for years in both legs and also my left arm. I am in New Zealand and have a specialist here who after Brain MRI scans and all sorts of other test put me on Madopar. This has been working really well up until a few months ago. I would take Madopar 1 hour before bed otherwise it didn't work either.

Now I have been to the specialist today and he told me about this site and he has change my medication to something called pergolide 0.25 so going to start that one tomorrow and see how it goes.

Well I hope to try and get on here on a regular basis. Will be great to have some others to take to that suffer from the same condition.

Bye for now

Dale

[jumpyowl]

Welcome, Gizmo from New Zealand.

So you are switching from Madopar (which is Levodopa and benserazide combination. In other words it is a combination of an dopamine agonist precursor and a decarboxylase inhibitor). As far as I know it is not widely used in this country but in Russia e.g. it is quite popular. (It is probably close to Sinemet).

Now pergolide (Permax) is much better know here:

[About PERMAX (pergolide)

This medication is a dopamine agonist (acts like dopamine on the dopamine D1 and D2 receptors). Permax may work better than Sinemet for daytime RLS symptoms and for more severe RLS. Permax comes in 0.05 mg, 0.25 mg, and 1.0 mg.

Go slow with Permax to avoid side effects which include nasal stuffiness, hypotension (low blood pressure), nausea, headache, and lightheadedness. The problem with hypotension can be very bothersome if the dose is increased too quickly. Dyskinesia (involuntary movements) as with Sinemet, seem to occur mostly in Parkinson's disease patients, but not in RLS patients.

A minority of RLS patients on Permax may get tolerant of the drug and need higher doses. This tolerance problem is not generally as bad a with other drugs, such as the sedatives or narcotics, as most will still be controlled by the higher dose. There is little or no cross tolerance with the other dopamine agents (Mirapex or Requip), so a change can be made to another drug once tolerance to Permax becomes a problem.

Augmentation has been reported in some studies with Permax in about 10-22% of patients. The problem is not similar to the augmentation seen with Sinemet as giving more of the medication earlier in the day to treat the RLS symptoms work well, rather than worsening the problem as with Sinemet.

A new study published in the Mayo Clinic Proceedings (Mayo Clin Proc, 2002;77:1280-1286) has just revealed 3 cases of valvular heart disease from Permax. This is similar to what was seen in the past with the diet drug Phen Fen (from the fenfluramine part). Permax is an ergot-derived drug which is a class of drug that has been known to cause valvular heart disease. Although it is to early to know whether there is a significant concern for all patients taking this drug, patients on this drug should see their doctor and an echocardiogram (the best test to see if any valvular heart damage is occurring) should be considered.

In addition, there are several case reports of Pulmonary Fibrosis (scarring of the lungs) caused by Permax. The latest article is in Clinical Neuropharmacology, Vol 25, No. 5, pages 290-293. This problem with Pulmonary Fibrosis should also be considered when using Permax for long periods of time. (from Southern California web site)

It is an ergot derivative, so I would prefer Mirapex or Requip for less complications. However, neither may yet be available in New Zealand.

Let us know how it works out for you. Also please visit in the same forum the topic ORP, our research project. You may want to contribute.