cHANGE IN MEDICATIONS

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
badnights
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Post by badnights »

Good luck Jane, come back and tell us how it went, and we can help some more.

Don't confront him, just tell him you've heard that stopping those drugs can cause a week or two of terrible symptoms, and can he provide you with a way to contact him and a backup plan for how to deal it if it happens to you. If he can't give you those two things, tell him you don't feel safe stopping the drugs without them.

Then ask him if he would like to have a paper you found in your researches, written by doctors, and show him the Mayo protocol. He will have very little time with you, so highlight some relevant parts about augmentation, tolerance and rebound, and refractory RLS.

Remember he has a lot of knowledge, so even though he may know nothing about RLS yet, he is still worthy of respect. However, the fact that he wants to get you off those high doses suggests that he might know something about RLS, so maybe he's just not communicating it well. Keep an open mind but be politely firm not to let him cut you off without a way to contact him if things go bad.

badnights
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Post by badnights »

this is the way I might highlight the Mayo algorithm if I were you but I'm not :) :
--page 918, comment # 3, info on augmentation and rebound.
--p 919 comment #7, info on augmentation
--p919 comment 8 you should highlight the first two lines
--p 920 Refractory RLS
- highlight the definition of it including bulleted points
- highlight the bullets under Medication
- under comment 11, highlight first two sentences about dopamine agonists and augmentation.

(Note this algorithm is slightly out of date: pergolide, also mentioned under comment 11, is no longer used because of health risks.)

Unfortunately it does not mention the intensification of RLS when withdrawing from DAs after augmentation! So, since you don't have the book itself, print this:

"Severe augmentation invariably causes such distress that people are desperate for relief. Increasing medications further provides little relief and may ultimately intensify symptoms. Stopping the drug will eventually relieve the augmentation, but this may take some time - leaving the patient in great distress. The time it takes for the effects of augmentation to wear off can be quite variable, lasting several days to weeks. Opiods can be used short term to control the intense RLS symptoms in these cases. There are other options for therapy once the effects of augmentation have resolved. Another dopamine agonist may not reproduce augmentation ....."
From: Buchfuhrer, Hening, and Kushida, 2007. Restless Legs Syndrome. American Academy of Neurology Press, Quality of Life Guides, Demos Medical Publishing, New York, p. 106.
(Buchfuhrer and Hening are co-authors of the Mayo algorithm)

I was super-scared to tell my doctor anything I knew about RLS that I suspected he didn't know but he responded very well!

Polar Bear
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Post by Polar Bear »

Just for a little information - I quoted a little piece from Dr Bs. book regarding augmentation/withdrawal/opiates under the other thread 'Dealing with RLS'. Post is 17 February at 9.07am.

Best wishes for your doc appointment today.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

jane
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Location: Topeka, KS

Docrors Appointment

Post by jane »

All of you are wonderful, with your information, suggestions and support. I wish that I had used your sage advice earlier!

Thanks a bunch - Jane

badnights
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Post by badnights »

come on back and use us some more! :D

jane
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Location: Topeka, KS

Discussion Board

Post by jane »

I will come back and use the expertise from experience found within this Group!
There is a good chance that I will ask for a consultation with my primary physician, who knows my long term history in general and especially the past use of Opiads for the Chronic headaches!

Where have I been all these years when all of you were out there?I have always been a slow learner and learn ideally experientally.

Love to all who have helped - Jane

cornelia

Post by cornelia »

Jane, www.rls.org has a special leaflet on augmentation that you can download and take to your dr. You can find it under 'medical and scientific info' and then under 'publications'.

Corrie

jane
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Location: Topeka, KS

Doctor's vist

Post by jane »

As promised, this is the report of my Doctor's visit. I was pleasantly pleased with how it went. I had misunderstood something important when his nurse called yesterday, i.e., he is adding Ultram to the meds. I am to take a 50 MG of Ultram 3 times a day. Lower the Sinemet from 1 at lunch and two at dinner, to 1 at noon and 1 at bedtime (25mg-200mg). The Mirapex from 1.5 mg,one-half at lunch and the other half at dinner, plus 1 -0.5 mg at bedtime to solely: 1-0.5 mg at bedtime only.

He seemed very sympathetic and was trying to lower my overly high RLS meds to more reasonable lower amounts and covering the loss with the Ultram. It is worth a try. He was impressed with my checking things out and took the Mayo's study.

Thanks again to All - Jane

SquirmingSusan
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Post by SquirmingSusan »

Excellent!
Susan

Neco
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Post by Neco »

Glad to see you are getting some Ultram at least.. I don't know why someone would put you on both Sinemet and Mirapex at the same time though.. If one of those results in augmentation it would be extremely difficult to tell which one is causing it..

For what its worth though, I hope the Ultram provides an improvement.. You may want to discuss getting off the Sinemet completely though.. Augmentation rates of 70% and higher are not good odds for patients IMHO.

Polar Bear
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Post by Polar Bear »

Jane, I am so happy that you found us before your doc visit and that we were able to help.

Your doc sounds fine and willing to work with you.

Well done.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Post by ViewsAskew »

Also glad to see a positive outcome. It sounds like he's willing to work with you....that's the biggest hurdle in my eyes.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

jane
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Location: Topeka, KS

RE: Neurologist

Post by jane »

It is good to see all the positive responses regarding my visit with the Neurologist.

Zach. not sure which of my Neurologists over the years put me on both Mirapex and Sinemet, but I have had several or more continue the mix. At the end of your comment you used something like IMHO, or whatever it was, but I am not familliar with what it stands for? Not sure that I comprehend what problems you think that there is with the Sinemet?

I took my first Ultram at dinner a little while ago, I am eager to see whether it does the job.

Jane

badnights
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Post by badnights »

Sinemet causes augmentation in 30 to 80 % of RLS patients who take it, (the number differs depending on which study you look at). Augmentation, as you probably learned from your crash course yesterday and today, is a paradoxical worsening of symptoms: they arrive earlier in the day, they arrive sooner after lying down to sleep, they are stronger, or they spread to other body parts. Sinemet is the worst for causing augmentation, but the newer Parkinson's drugs (the dopamine agonists Mirapex and Requip) also cause augmentation in a large number of patients, and the longer you're on them the more likely you will augment. I augmented within a week on Requip :(

So that's why Sinemet is "bad". On the other hand, it works with some patients. Dr. B recommends using it for intermittent RLS, not for daily.

I'm so glad your new neuro is knowledgeable about RLS! And open to listening to what you've found out on your own. Don't be bummed out if the Ultram doesn't work right away- you might have to experiement with your doc to get the right dose, to come off the other meds completely, try something else, etc,. but DON'T FORGET there's an answer out there, it's just different for every RLSer. Happy dreams tonight!

jane
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Location: Topeka, KS

Augmentation?

Post by jane »

I can be pretty thick at times and am a slow learner. I still struggle with getting through my head use of thzt word in this contact. When I go to definitions it mentions things like breast augmentation. Maybe someone can draw a word picture that clears it up for me.

AS to Ultram doing the job, there really is no room for a lack of effectiveness. This is a point that I was working at getting across to Dr. Zhao. I was telling him that in the early years (likely 25 or more ago).any a night I paced in circles in our living and dinning rooms for 3 to 4 hours. It was horrible but I was physically able to do it. Right now my lower back is so bad that I am unable to even stand for a minute without pain. I just went through shots of steriods and other experiments and nothing worked. I may end up having to have surgery. so I am unable to walk RLS off or to exercise. Should RLS come on, I'm just in for a miserable period. Eperimenting is playing craps for me.

May everyone have a good nights sleep and rest. Jane

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