Advice needed re medication for RLS?
Posted , 6 users are following.
READ DISTURBING REPORTS ABOUT PRAMIPEXOLE MEDICATION.
ANYONE ELSE TAKING THIS DRUG??
0 likes, 13 replies
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Notes on Advice needed re medication for RLS?
trevor09910 ellie88719
Posted
Hello Ellie,
I use it and it seems to work but I was warned by a concerned doctor that prolonged use could lead to the symptoms it suppresses becoming a permanent problem. In other words the twitches and spasms it suppresses could become permanent -24 hours a day- and irreversible as a result of the drug. That frightened me but I don't know what else to use. She said it needs a high dosage for around five years but it could lead to that problem.
What have you read or heard about it?
ellie88719 trevor09910
Posted
HI Trevor, thanks for that information. I don't know anything about this drug except I've read somewhere it's prescribed sometimes for RLS. I was prescribed Pramipexole about ten years ago and it worked very well for a couple of years then I started to feel the RLS symptoms gradually come back. My doctor increased the dosage and i was taking 0 .18mg x 3 nightly. About a month ago same symptoms happening again, so I would say there was approximately just over three year intervals between each increase. I then happened to read an article about 'augmentation' which is what you describe, i.e., the symptoms returning with a vengeance when the drug gets up to a certain level, depending on the patient I presume. I was quite disappointed because they have worked so well for me but after doing a bit more research there are horror stories of people having to gradually stop taking it causing them horrible withdrawal symptoms!!
I am now off them completely which I did over six weeks and what saved me was taking two Tramadol painkillers at night (these were prescribed for my Osteoarthritis). I asked for advice because I would rather take medication that specifically targets RLS rather than be using my strong painkillers. There is another drug called GABAPENTIN but they tend to cause sleepiness even during the say after taking them which is no use for most people.
Hope thats helped a bit - shame doctors don't explain the future problems associated with what they are prescribing..
Good Luck,
Kind regards, ELLIE
trevor09910 ellie88719
Posted
Thanks Ellie. Pramipexole has worked well for me for several years but its potential long-term permanent possible side effects niggle away at the back of my mind. In the last two weeks it appears to be less effective so it is time for me to find something else. I live in Australia and the crop of doctors coming through the system know which drugs are available and have little hesitation in prescribing them without mentioning side effects. It is almost as if they don't know, so we have to make our own judgements and decisions.
Something I have noticed for a very long time is a link between the symptoms and hydration. If I am well hydrated, I have fewer symptoms and I can't find any empirical evidence to support this, so it is only my own observations, but it seems to be. I don't like water (unless it is with a decent whiskey) so I tend to be under hydrated and the symptoms exacerbate. There may be something in this.
Thanks for your help. This forum is important and useful
Cheers
Trevor
jagtar48560 ellie88719
Posted
Ropinirole, I think, is the best medicine so far for the RLS. If you can get slow release Ropinirole, you might have to see the neurologist to prescribe , is better. I use it.
ellie88719
Posted
Thanks jagtar, i will ask my doctor about Ropinirole .
MezaJarJarBinks ellie88719
Posted
I have posted this many times before, but I want to help anyone suffering from this.
First, join the RLS.org foundation. There to will have access to all the information you can need about RLS and PLMD.
You can view past videos of Webinars by researchers and doctors. They also give you access to info directed at physicians. They publish a "Nightwalkers" newsletter every 3 months.
In a nutshell, the only meds available for RLS that does not cause "augmentation" are opiates. I have been taking that for 20 years with no augmentation. However, you might be able to resolve your issues with I/V iron infusions or pills.
The really tough part is finding a doctor whom cares enough to stay current on the latest research.
Start by joining or calling the RLS.ORG foundation.
ellie88719 MezaJarJarBinks
Posted
Thank you, i will join the RLS Foundation.
You mention opiates; I was prescribed Tramadol for Osteoarthriris which i rarely take, just try and get on with the pain which is better if i can rest. Took 2 of them last night and no restless legs!! I'll try them again tonight and, fingers crossed, they work again.
valda23668 ellie88719
Posted
I have been taking a pramipexole tablet (Sifrol) 0.25 mg nightly for 5 years. It is good if I take it on time that is 7 pm or an hour earlier in winter when it gets darker earlier. Some nights I do still have trouble sleeping although the legs seem to be ok so that may just be something I would experience even if I did not have RLS. I first started getting RLS when I had a hip replacement 5 years ago. My father did have RLS although they didnt know what it was and he walked the cold tiles nightly. My brother has had it since he was 35. He was a long distance bicycle rider for many years whether this caused pressure on any nerve endings ? which activated the RLS .
trevor09910 valda23668
Posted
Thanks Valda,
I wasn't aware that timing is important and I generally take it around 10 pm. Is that too late? (which is about half an hour before I go to bed). Sometimes no problem all night. Other times I can be woken almost precisely ninety minutes after I go to sleep. It is uncanny. And then the 'fun' starts.
ellie88719 valda23668
Posted
My late father also suffered from RLS too, he was a keen walker even in to his eighties. I believe research has shown that it is hereditary although that doesn't help much!! My daughter doesn't have RLS normally but did when she was pregnant!!! Guess what, the doctors hadn't got a clue why!!!
valda23668 trevor09910
Posted
Trevor I find that the timing is so important. For me it takes at least 2 maybe 3 hrs to kick in. If I do not take it at 7 and forget and then the legs start about 8.30 I know I am in for trouble.
valda23668 ellie88719
Posted
Ellie I have a friend who has RLS since her pregnancy 40 years ago and have heard of other women with RLS with pregnancy and it goes. My specialist was surprised my RLS had not gone with the hip replacement. Once again I think the pregnancy and RLS connection is a pressing on some nerve just the same as my brother with long term RLS has from his career in long distance bike riding.
trevor09910 valda23668
Posted
Thank you Valda. Good advice and I will certainly try it.