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Posted: Tue Feb 16, 2010 10:35 pm
by jane
i am Jane and have had RLD much of the time since I was diagnosed with Diabetes 34 years ago. I am 80 years old and heve extremely severe lower back pain. which makes pacing or any appreciable walking a serious problem. I notified my Neurologist that I am starting to get some immineness to either Mirapex or Cabidopa-Levo. He wants to dratically reduce both meds and it frightens me to death. I see him late tommorrow morning.

Would anyone like to know more about me, amount of medication or anything else?

Thanks - Jane

Posted: Tue Feb 16, 2010 10:53 pm
by badnights
I would like to hear about you. Are you on both Mirapex and Leva-dopa at the same time? That's unusual.

Don't be frightened of reducing them, especially if you are experiencing augmentation! However, he should plan to give you something for the withdrawal. What does he plan to put you on instead, and do you know if he plans anything for the withdrawal?


Posted: Tue Feb 16, 2010 10:56 pm
by badnights
I meant to say, don't be afraid of stopping them - as long as he covers your withdrawal and replaces them with something else. Reducing them is another story, I hope he meant to stop and replace them, not reduce them?


Posted: Tue Feb 16, 2010 11:05 pm
by jane
Yes, I am on high doses of both medications, having been trying to treat 25 or more years of RLS. The Doctors nurse did not mention his giving me something to suplant the current meds. I was on Requip years ago. I am unable walk on off RLS due to to severe lower back pain does keeps me from any appreciable walking. My back hurts by just standing a little while. I cannot afford to have RLS come on! The amount of medication it takes to keep my RLS in check has had to incfrease over the years.


Posted: Tue Feb 16, 2010 11:09 pm
by jane
To Beth:

No, his nurse did not say that he would give me something else.


Posted: Tue Feb 16, 2010 11:30 pm
by badnights
Stick around this board for a while, Jane, there are lots of people who know an awful lot about RLS and they will respond to you as well.

Meantime, how much of each medication are you taking right now, and at what times of day?

Posted: Tue Feb 16, 2010 11:46 pm
by Polar Bear
Hello Jane
I suggest you print out a copy of the Mayo Clinic Algorithm. It is easy to read and an excellent document to take with you to your doctor regarding the treatment of rls and all about the different medications available.
This link should take you to the home page of the Southern California rls site and if you scroll down, there should be a link to the Algorithm somewhere.

Posted: Wed Feb 17, 2010 12:03 am
by ViewsAskew
Hi Jane,

I'm so sorry to hear that you're in this pickle with the RLS and the medications. As you well know, treating RLS can be very difficult.

I guess the first thing I'd ask is to tell us all of the medications you've tried over the last 25 years and how they worked (or didn't work). I know that's a lot to ask, but it can help us figure out how to best help you.

Second, I'd ask how much you think your doctor knows about RLS. Do you get the idea he's well informed?

As Beth said, we've got some great folks here. Most of us aren't doctors (though we have a few pharmacists around) but many of us have learned as much about RLS as most specialists who treat RLS. We can't tell you what to do, but we can hopefully help you figure out how to get the best treatment you can.

RLS medicatons

Posted: Wed Feb 17, 2010 12:19 am
by jane

I take a half of a 1.5 mg Mirapex at lunch and the other half at dinner, then I was taking .5 at bedtime. Then 1- 25-100 Carbidopa-Levo with lunch and then two of them at dinner. This worked for years until last Friday when I woke up at 3 AM with full blown RLS, which I was unable to walk it off. The I woke up at 1 AM the next morning with RLS. In desperation I have taken .25 of Mirapex and one Carb. Then called my Doctors office on Monfay and got no response and then called again today. With my 80 years and all the years of Diabetes, over the last 6 months to a year I have had all kinds of problems. I am a Transexual woman in a 54 year marriage and was a educator to medical & mental health professionals. University classes and others for 15 or more years along with my spouse. I had prostrate surgery years ago and am having trouble from scar tissue. I had Macular Degeneration in my right eye about 6 to 9 moths ago and had four shots in that eyeball over four months with another new one scheduled for next Friday. I was active working with tools at Church, for needy members and at home. I cannot do that now with my back poroblem - which I sorely miss! The local Pain Mangement Dept at one of our hospitals gave me about 3 or 4 steriod shots, which didn't help. Then the Doctor checked to see if deadening the nerves would work and that also was a no go. I am experiencing very early systems of Tardise Dhyscanesia (sp). Now you know an awful lot about me! I also spent 5 years as a Catholic Benedictine Brother doing mainly plumbing and Electrial work on the campus. This was about 6o yearsd ago or so. I have a Masters in Finance and my spouse is a retired RN who woked as a Psych nurse. We got those degees in our mid fifties.
I don't know how to neogiate this discussion board?


Posted: Wed Feb 17, 2010 12:36 am
by ViewsAskew
Hi Jane,

Negotiating this board takes a bit of practice if you're not familiar with it. I don't know any quick way to learn it except practice. I applaud you for trying.

It sounds like you're been using the same therapy for the RLS for quite awhile.

Are you familiar with a term called augmentation? Given what you are taking, it is a possibility for what is going on. On the other hand, it just could be that the RLS is simply getting worse.

Posted: Wed Feb 17, 2010 1:40 am
by badnights

You created this thread under the "registation" heading but I see one of our moderators moved it to the "pharmaceutical therapy" heading.

There is another resource you might want to download, which is the RLS Foundation's pamphlet summarizing RLS and its treatment. It is similar to the Mayo algorithm but goes into more detail. The Mayo one is better to give to a busy doctor but you should read both yourself.

So you take:
lunch 0.75 Mirapex and one 25-100 Caridopa-LevoDopa
dinner 0.75 Mirapex and two 25-100 Caridopa-LevoDopa
bed 0.5 Mirapex

That's indeed a high dose. Did you increase it gradually over the years because it was becoming less effective? The Mirapex is usually maxed out at 3 doses of 1.5 mg a day, and I haven't heard of taking them together on a daily basis but I'm not an expert.

Since Mirapex worked for you for so long, you may be able to use the other RLS-approved dopamine agonist, ropinirole (Requip) without developing augmentation or other problems, at least not for a while. I mean, from what I know it would be worth a try, maybe the next thing to try.

However, it is more common than not to get extremely strong, persistant symptoms for a week or so after discontinuing a dopamine agonist (like Mirapex). An experienced doctor will give you codeine or oxycodone or SOMETHING to get you through this, until you're back at a base level of symptom severity. It's important to get to the base level before you start another drug, especially if the other drug is ropinirole (Requip), becaue if you start when your symptoms are still elevated from the withdrawal, you will end up taking a higher dose than you need, which will increase the liklihood that you will develop problems on the new drug.

I am trying to find the place in the Mayo algorithm where it says to buffer the patient against the increased RLS symptoms during withdrawal, and I can't see anything about it there, or in the RLS Foundation pamphlet, or in Hening, Buchfuhrer, and Lee's book (Clinical Management of Restless Legs Syndrome). !!

I can only find a reference to it in Buchfuhrer, Hening, and Kushida's book "Restless Legs Syndrome". On p 106 he says "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 teh 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 ....."

So, don't be afraid but be armed with some knowledge, and the Mayo algorithm to give your doc. If he asks you to stop your meds without replacing them with anything, tell him you have heard there is a discontinuation period during which symptoms get severe, and what does he suggest in case that happens to you?

And if he wants to give you another dopamine agonist (Requip) without getting your symptoms back to a base level first , tell him you've heard that there's a withdrawal period and if you take Requip during the withdrawal you may end up taking it at too high a dose which will increase your chance of augmentation.

Be sure you know what augmentation is by reading the Mayo thing first - he may not know and may ask you what you mean.

Is this too much info at once? Let us know if you have trouble finding/downloading the Mayo algorithm or the RLS Foundation's pamphlet.

Posted: Wed Feb 17, 2010 3:08 am
by Polar Bear

Try this link: ... ml#Scene_1

It should take you straight to the Mayo Clinic Algorithm ready to print. There are about 7 pages total.

Dealing with medication change

Posted: Wed Feb 17, 2010 3:21 am
by jane
One of the problems I am dealing with is that I have such a short time between tonight and 11:45 AM tomorrow to find the information to have for the max 15 minutes my Neurologist is going to give me. Also dealing with early phase of Tardise Dys. I question that he knows much about RLS and in any depth. He will probably react negatively if I confront him. I had a great D.O. Neurologist that I fully trusted and who was extremely feeling for his patients. He knew about RLS, but retired about 4 years ago or so. My current Neurologist is not long from China. Sadly I don't trust any of the local neurologists (four in town - the State Capital of KS - Topeka). I need to buy time, possibly ask for a second opinion, but don't know who I could see locally. I will try to find what you reccomend that I download.
Thanks so very much - Jane

Re: Management article

Posted: Wed Feb 17, 2010 3:41 am
by jane
I dowloaded that link, that is a God-Send, Thanks a bunch. Yes, I did increase the dosage over time!


Posted: Wed Feb 17, 2010 3:49 am
by Polar Bear
Just glad the link worked.
Lots of good info on it, some of which could be highlighted for ease of reference.
Good luck with your doc appointment.