Symptoms Different??

[Woody4]

Anyone else experienced changing symptoms over time??

[Woody4]

In the beginning of my journey with RLS it was my legs. Then it started being my legs and an occasional arm. It has now become almost entirely my arms. Anyone else??

[Hidden in reply to Woody4]

This sounds like augmentation. What medication are you taking?

[Woody4 in reply to Hidden]

.5mg pramipexole

[Hidden in reply to Woody4]

That's your problem then. This is quite a high dose for RLS and it's this that's causing your augmentation.

There are four things you can do to treat this and improve your symptoms.

1) Have blood tests for serum iron, transferrin and ferritin. If your ferritin is less than 75 then start on an oral iron supplement.

2) Check that you're not eating/drinking anything or taking any of the many medicines that can make RLS worse.

3) Start reducing the pramipexole and if necssary stop it altogether.

5) Discuss with your doctor medicines to help with withdrawal effects and to replace pramipexole when you've stopped it.

Pramipexole should not be stopped suddenly this is potentially dangerous.

To minimise withdrawal effecst it is best to wean of the drug as slowly as you can bear.

I found that reducing the daily dose in steps of half a 0.125mg tablet every 4 weeks worked very well for me. If withdrawal effects aren't too severe then you can try every 2 weeks.

The standard replacement for a dopamine agonist such as pramipexole (ropinirole or rotigotine) is an alpha 2 delta ligand, i.e. either pregabalin, (lyrica), gabapentin (Neurontin) or in the US gabapentin enacarbil (Horizant). Your primary care doctor should be able to prescribe one of these.

The second line treatment for RLS where dopamine agonists have failed is an opioid.

Here's some links you may find helpful

sleepreviewmag.com/sleep-di...

uptodate.com/contents/treat...

- section on augmentation.

I hope this helps

[Woody4 in reply to Hidden]

Trouble I have is that being a veteran I have to go to the Dr they tell me to. And that neurologist is an old dinosaur that doesn’t listen or care about what I say.

[Hidden in reply to Woody4]

I am sorry that you feel powerless to be able to get the right treatment.

I'm sure that like the UK, there are laws and processes to protect citizens from bad practice.

A doctor, whoever they are, who insists on prescribing you medication that's actually making your condition worse is acting both legally and ethically wrong.

If you make it known to this doctor that the pramipexole is causing you harm and they fail to do anything about it, then they may be guilty of medical negligence.

[Woody4 in reply to Hidden]

I live in a relatively small city where all the Dr’s seem to know each other. I’ve tried talking to my primary GP and she doesn’t want to listen to anything negative about her ‘friend’ and/or do anything to hurt his bottom line. Example, last visit lasted maybe 5 minutes while he scribbled something in my file (prove he had seen me) and totally ignoring what I was trying to tell him, Then as he was walking out the door he said “seems like what we are doing is working. See you in 6 months” Then he charged the VA almost $300.

[Hidden in reply to Woody4]

I'm afraid I can't help you with that. I would be very angry if I were to be in that situation. You have my sympathy.

I hope you find a solution because otherwise I can only see your condition getting worse unless you stop taking the pramipexole.

I coud suggest several things I'd try in your situation, but your health care services are so different to ours.

[Woody4 in reply to Hidden]

I’m willing to try anything especially now with the way it is acting up. I’m going to see if my GP will read a few articles on RLS and maybe even join this site.

[Hidden in reply to Woody4]

That sounds like a good idea. If you could supply your GP with some articles that could be helpful.

[lorrinet in reply to Woody4]

That's what I did over 20 years ago, and the result was that, after reading the information, she sent me to see an RLS consultant, who recommended that she continue to prescribe Dihydrocodeine for me for as long as they work.

It's obvious from my repeat prescriptions that my dose of these drugs is stable so I continue to have them with no trouble after all this time - although I am alarmed at what I read about the apparent war on opioid use in America, and pray that it doesn't happen here.

My GP later told me that the information I had given her on RLS had enabled her to treat another patient, with more knowledge than she previously had.

[Woody4 in reply to lorrinet]

Any suggestions on the material to give my GP..

[lorrinet in reply to Woody4]

I'm so sorry, this was over 20 years ago and I no longer have any of it. I'd down-loaded a great stack of info and she'd read it all, bless her. All I really remember was that she'd previously told me I couldn't have RLS because it doesn't occur in the arms, only the legs. This particular point was strongly stressed in the info, that around 22% of sufferers also get it in the arms. But I think that point is much better known now.

Sorry I can't help, but it will all be available on the net. You could look at RLS at the Johns Hopkins (?) in Baltimore. That's one place I was looking, I think.

[Woody4 in reply to Hidden]

Was embarrassed to tell you after seeing your reply to me taking .5mg pramipexole that 6-8 months before my neurologist had doubled it to 1mg when I had started augmenting.

[Hidden in reply to Woody4]

Your neurologist would appear to be completely ignorant about RLS. If somebody is suffering augmentation due to pramipexole, the treatment is to reduce the dose, not double it.

Dont be embarassed about that.

Surely if you're referred to a neurologist, no matter hbowe it's paid for, you have a trght to see somebody who's actually knowledgeable about the condition you have.

[Woody4 in reply to Hidden]

Unfortunately this neurologist is considered the best for RLS in the area. Joogs gave me the name of a Dr in the Columbus area that knows RLS but he isn’t accepting new patients. I will ask you also about what material would be good to give my GP about RLS??

[Hidden in reply to Woody4]

Oh dear, if that's the best?

There is a lot of good information I could give you which is available in the UK, unfortunately you can't access it in the US.

You may find this article helpful, written by a prof of neurology at the Mayo Clinic

uptodate.com/contents/treat...

This may also be useful. Dr B is an internationally reputed RLS expert based in Berkeley CA

sleepreviewmag.com/sleep-di...

This is also informative

sciencedirect.com/science/a...

[Woody4 in reply to Hidden]

Thanks, I appreciate the help. If some of the info is only available in the UK, then maybe I should come to the UK!!

[Hidden in reply to Woody4]

There's information in the US, it's just I'm familiar with the info in the UK. which is UK restricted. I can give you an URL for it but you would get access denied.

[Hidden in reply to Woody4]

I believe it is the progression of the disease. I have read that people may develop it in the arms and other places years later after experiencing it in the legs. This was my experience. After about 20 years of RLS in the legs, I developed it in the arms. I have also had the weird experience of developing it in the face and back a couple of time. Additionally, when I am having an attach of RLS, I develop it in my genitals and bladder. It is an unpleasant, non-sexual awareness in my genitals coupled with a need to urinate ever couple of minutes.

The sensations in the arms developed before I started any medication.

Just my humble opinion:

Jerold in Citrus Park, FL

[LotteM]

Woody, I've read through your post, Manerva's replies and your replies to him. Given your situation, would you consider contacting rls.org for advice? It may be well worth becoming a member. Rls.org has loads of free information, and even more if you become a member. I sincerely hope they can help you find and get access to a knowledgeable doctor.

[Woody4 in reply to LotteM]

Yes, Yes!! I would love to join any organization that can/could help. Kinda thought that was who this group was/is. As for the knowledgeable Dr. I was given a name of a Dr 150 miles away (would gladly have driven) but he was not taking any new patients.

[Woody4 in reply to Woody4]

Just went to RLS.org. And I see it is definitely different from this site. Thank You

[LotteM in reply to Woody4]

I hope you find some good help through that organisation.

[Woody4 in reply to LotteM]

Just throwing this out there. Read where someone posted that tramadol could/would cause augmentation. Also have read that it helps some people with their RLS. I’ve been taking tramadol for well over 10 years. I was given it originally for back pain, before the RLS really started. Question- Could the tramadol be causing my increase in episodes??

[LotteM in reply to Woody4]

It can. There has been a published report by researchers from JohnsHopkins on (signs of) augmentation. If I remember correctly, these few individuals were on high doses of tramadol, eg. 400 mg daily. And I think the researchers postulated that it might have happened because Tramadol also binds to dopamine receptors. All from the top of my head.

Several posters here on HU also reported signs of augmentation when on tramadol.

But then, it doesn't HAVE to happen. But: forewarned is forearmed.

[Woody4 in reply to LotteM]

I currently take 100 mg of tramadol 3 times a day. The last time is with 1 mg of pramipexole before bedtime. Also it seems that if I take this combo less than 2 hours before I go to bed, my chances of having an episode greatly increases.

[LotteM in reply to Woody4]

Woody, difficult to tell based solely on what you write here. Have you found a quality care centre somewhat nearby for RLS through rls.org? If not, you could consider writing to dr Buchfuhrer ([e-mail]); he usually replies within 24-48h. I suppose you might want to try to reduce and/or come off either tramadol or pramipexole to see if that improves things. But it is difficult to advise which one to try first. Dr. B may be better at that. And you may have to find a replacement medicine. For tramadol that maybe oxycodon (Oxynorm) or the slow release version Oxycontin. It is a different story for pramipexole; I would NOT replace with another dopamine agonist (DA). But then, the tramadol (or oxycodon or other strong painkiller) alone may work well enough. Always trial and error as we are all different.

Good luck. I hope you get it sorted to improve things.

[Woody4 in reply to LotteM]

Well another late night watching movies. No RLS clinics near me. Truthfully it’s hard to find a Dr that knows anything about it. They are just pill pushers. Started backing off of the tramadol. It’s only been a couple days. Symptoms started getting worse before I started. Haven’t emailed Dr Buchfuhrer yet. Definitely need too. Thanks