Noobie

[Rachelp1]

Hello, my name is Rachel, I’ve been lurking here for a red months and thought I say hello and ask for some advice please. I have been on Ropinirole for a while now but my RLS has started to get worse, which from reading here is a common issue. Recently have have been taking Magnesium supplements with some degree of success. I have an approx with Neurologist soon, I was going to ask for test for magnesium and iron, are there any other tests anyone can suggest I request?

I understand that the neurologist may know very little about RLS, it seems from here that best advise is that I come off Ropinirole, any advice on what I should ask to go into instead please?

Just wanted to say that I am very grateful that you are all here. I’ve had a few years from some posts, but it’s very comforting to know you are here.

Thanks

[Joolsg]

Hi Rachel and welcome.

Most people join this site after they have experienced worsening of RLS on Ropinirole or Pramipexole.

The pinned post on the right of this page explains what augmentation is and if you are experiencing it then, yes, the only thing to do is reduce the ropinirole very, very slowly.

Neurologists are not familiar with RLS or augmentation or how to withdraw safely from dopamine agonists unless they are experts on RLS ( & there aren't many). That is why this site is so helpful. Many people on here have educated themselves on RLS and have become patient experts and I value their advice more than any neurologist I have seen in England.Don't let the neurologist put you on another dopamine agonist as augmentation happens very quickly if you've already augmented on ropinirole.

Pregabalin or gabapentin are good alternative medications and you can start taking them at the same time as you are reducing the ropinirole.

Ask for full blood count tests and ensure serum ferritin is above 100 and serum iron above 60. 50% of RLS sufferers will have a brilliant response by raising these levels.

Let us know how the appointment goes and what the neurologist has to say.

good luck.

[NeedRLSrelief]

Definitely make sure you have magnesium and iron in your body. Those seem to be common deficiencies in RLS sufferers. I think I was iron-deficient for many years, which may have helped bring on this RLS. I'm new to this forum also, so I'm looking forward to reading up on what others have said and done with this irritating syndrome. Good luck and God bless.

[Parminter]

Hello Lurking Noobie!

Most of us have been in the same position, including fearing that any doctor we see will not know much - a well-founded fear, as the real experts admit.

Perhaps you should print out the best information you can find on augmentation and take it along with you. You need not produce it if it becomes apparent that your neurologist knows his stuff, but be prepared to stand your ground, politely, if he does not.

With this condition you have to become your own best advocate. And, as more than 60% of RLS is familial, we must live with it for life.

bmj.com/content/356/bmj.j104

This abstract makes the dangers of dopamine agonists clear. DAs were the drugs of choice until the dangers of augmentation became undeniable. Unfortunately most doctors have not caught up with this, and I'm sure the drug reps don't want to tell them. (I have become an extreme cynic after decades of RLS).

If you can afford it, join the Restless Legs Foundation at rls.org and spend time reading the information at rlshelp.org - you will learn more than enough to make your own case.

[AGDE]

I totally agree with the above replies Rachel, let us know how you get on. Good luck

[Shaft1952]

Hi Rachelp1 I was on ropinerole for a while as well but then it stopped working plus I ended up with augmentation. I was lucky to be reffered to a neurologist who has an interest in RLS, I have been on other medications, I am presently on pramipexole & pregablin 3 times a day plus codiene, I take magnesium at night. I have had a few iron infusions now. A lot of people will say iron levels are within normal limits, but for RLS normal isn't right for us. As consultant about his knowledge of RLS he may get annoyed but they can't specialise in all fields. Point out there us a medical section on RLS website. Good luck with your future treatment Irene 1952

[Madolegs]

Hi Rachel my names fred sorry i can't give you any advice at all that is why i joined to get info i am 70 now and had it all my life and its been really frustrating not being able to talk to anyone who has it or get any info so this forum is a real eye opener for me

[restless_in_usa]

Hi Rachelp1, also have been on Ropinirole for many years, just about 6 wks ago seemed to lose its effectiveness, making for miserable sleepless nights. Was so excited to learn that Yale now has a "Center for RLS", I live only 30 min away & got an appointment and doc has put me on tramadol, weaning off ropinirole. Was not impressed with his grasp of RLS but tramadol seems to be working better than ropinirole was. I really feel like a huge problem w this condition is the wimpy name, doesn't it just sound like something moderately annoying, not torturous, which it is? I forget what precipitated the doc saying, "Well of course I don't have RLS myself, so..." I don't think he had ANY idea. This was the most depressing thing to me... Even the most compassionate docs really have no idea..