Pramipexole and serious side effects

[EeFall]

EeFall, I hear you, but this isn't new information. The medical community has known of these problems for YEARS! And, yet, doctors know little to nothing about it. There MUST be a better way to get doctors information about issues before hundreds or thousands of patients have problems because of the doctors' lack of knowledge.

The ultimate answer is to find a cure for severe RLS/WED - that is not happening now.

The next alternative is to develop a medication that works to control severe RLS/WED without terrible side effects - that is not there yet either or I'd be on it.

The next best answer is to use a DA like Mirapex (pramipexole) that works with varying degrees of side effects (some people never have any problems for years while some have terrible problems even very early on).

You are a doctor with this current technology and I'm a patient with severe RLS/WED and I'm about ready to lose my family, career, and life if something doesn't happen to fix it soon. I have gone through all the other medications and treatments and nothing works except there is this magic pill called pramipexole that might just give me a few more years of life, to continue to work and support my family and enjoy life.

The doctor knows they are working on new medications but he can't see into the future, he only knows that the patient is most likely not going to function normally for much longer. One way or the other through accident, stroke, suicide its going to get him or her. Lets fix him up for today, maybe tomorrow something will come up that will be better, but in the meantime lets keep the patient going.

I would do the same thing my doctors have done for me, give me the Mirapex and hope that it lasts until something else becomes available because without it the patient is the living dead, or maybe just dead.

The FDA isn't going to have a heart for the patient. Back when it was working for me, before augmenting it was fantastic, it saved my life. Without it I wouldn't have gotten to this future and I wouldn't be typing this message now. That is a fact. I don't want a bunch of people getting in trouble for doing the right thing, no one knows the future, but the present is pretty clear. You need to save the patient today. The next thing that will happen is that they will take it off the market without an alternative medication. That will assure that many patients will lose their lives.

[rthom]

From what I understand part of the point was just that it does not work that way for everyone and the Dr's should be prepared to deal with those cases too. It's great that it offered you some benefit for a time but for others it just makes things far worse. It is sad that in this day and age of fast moving information technology, those we rely on most for information seem to be in the dark ages. We pay the Dr's to be consultants--to know more than we do or at least have a well educated opinion. But all to often it's not of much benefit, as they seem to know what they were taught in med-school and not a lot more. I had one Dr tell me he knew what he learned in medschool and he was offended that I offered him literature from the foundation--said to me why should he? It's sad...

[bobkat49]

Wow, I didn't know there was a new recommendation for the maximum daily dose of Mirapex. Can you give me a source for this? I am already at this dose, and my doctor told me I could increase it to double that dose if needed. I need to inform him, but I'll need a medical source. Thanks! (I'm an RN, but am "rusty" on my pharmacological knowledge, since I haven't practiced nursing for over 40 years.)

[ViewsAskew]

Wow, I didn't know there was a new recommendation for the maximum daily dose of Mirapex. Can you give me a source for this? I am already at this dose, and my doctor told me I could increase it to double that dose if needed. I need to inform him, but I'll need a medical source. Thanks! (I'm an RN, but am "rusty" on my pharmacological knowledge, since I haven't practiced nursing for over 40 years.)

My guess is that it's printed in The Clinical Management of Restless Legs Syndrome, Edition 2. I think Beth has this book (I have the first edition).

Dr Buchfuhrer has posted it multiple times on rlshelp.org - a website he maintains and where he answers people's questions. For at least two years he's been suggesting not to go over .25 mg per dose.

[jakesmom]

I agree, the drug itself is a miracle in a bottle, but doctors have to be more responsible in dosing. It was a Godsend to me for almost a decade, but I cannot and will not ever take it again.

[EeFall]

I agree, the drug itself is a miracle in a bottle, but doctors have to be more responsible in dosing. It was a Godsend to me for almost a decade, but I cannot and will not ever take it again.

I agree with that too. There is no way I would EVER take Mirapex (pramipexole) again but then my new doctor told me that no one who ever augments on it should ever take it again. My first doctors were not aware of that idea, or did not agree with it, or just didn't know what else to to do. I don't think it is written in stone somewhere (yet), but I think my new doctor is correct and I wouldn't touch it with a 14 1/2 foot pole now

[ViewsAskew]

I agree, the drug itself is a miracle in a bottle, but doctors have to be more responsible in dosing. It was a Godsend to me for almost a decade, but I cannot and will not ever take it again.

I agree with that too. There is no way I would EVER take Mirapex (pramipexole) again but then my new doctor told me that no one who ever augments on it should ever take it again. My first doctors were not aware of that idea, or did not agree with it, or just didn't know what else to to do. I don't think it is written in stone somewhere (yet), but I think my new doctor is correct and I wouldn't touch it with a 14 1/2 foot pole now

In 2005 or so, the Foundation and Mayo Clinic came out with the Mayo Clinic Algorithm - it said, in black and white, that people who augmented severely or who augmented in two or more DAs were NEVER to use a DA again. In my opinion, absolutely NO doctor treating WED since 2006 should not have known this. It was written in the 2007 Clinical Management of Restless Legs. Buchfuhrer has written is hundreds of times in his patient letters. The Foundation published it. Johns Hopkins, Mayo, Emory, and other hospitals/universities said so.

[EeFall]

In 2005 or so, the Foundation and Mayo Clinic came out with the Mayo Clinic Algorithm - it said, in black and white, that people who augmented severely or who augmented in two or more DAs were NEVER to use a DA again. In my opinion, absolutely NO doctor treating WED since 2006 should not have known this. It was written in the 2007 Clinical Management of Restless Legs. Buchfuhrer has written is hundreds of times in his patient letters. The Foundation published it. Johns Hopkins, Mayo, Emory, and other hospitals/universities said so.

Since doctors and researchers can't even agree exactly what causes RLS/WED, even to this day, I can sympathize with doctors having to make any decisions on medications and dosing. Then you also have this strange augmentation of dopamine agonists and I imagine it leaves doctors scratching their heads for answers. On top of that you have patients that will not respond to any other treatment except DA's, even after having augmented, finding that if enough time goes by that the medication seems to work again. Then on top of that you have doctors who say the only way out of the nightmare is to completely stop all medications (especially the med that one augmented on) to detox and I can see that there would be many doctors who would not want to do this to their patients for fear of the patient dying or sueing...

[badnights]

Wow, I didn't know there was a new recommendation for the maximum daily dose of Mirapex. Can you give me a source for this? I am already at this dose, and my doctor told me I could increase it to double that dose if needed. I need to inform him, but I'll need a medical source. Thanks! (I'm an RN, but am "rusty" on my pharmacological knowledge, since I haven't practiced nursing for over 40 years.)

I haven't dug into the new version of the little blue book (which used to be the little green book) but he says pretty much the same thing in the Neurotherapeutics paper, which will be more immediately accessible to your doctor anyway:

From Buchfuhrer, Mark J., Strategies for the Treatment of Restless Legs Syndrome; Neurotherapeutics (2012) 9:776-790

Both of these drugs should be started at their lowest dose
(ropinirole at 0.25 mg and pramipexole at 0.125 mg) and
increased if necessary every 5 to 7 days by their initial dose
until symptoms are controlled. Although the FDAapproved,
maximum doses for ropinirole and pramipexole
are 4 mg and 0.75 mg, respectively; many physicians exceed
this dose, especially when treating daytime symptoms that
may require 1 or 2 additional doses per day. However, after
10 to 15 years of experience with these drugs, concerns
regarding augmentation of RLS symptoms by these drugs
have made many RLS experts rethink the doses used to treat
RLS, and even whether these drugs should be first-line
drugs of choice for this disease. Due to concerns regarding
augmentation of RLS, In the opinion of this author and
several other RLS experts, the maximum doses of dopamine
agonists should be much lower than the approved FDA
doses (such as 0.25 mg for pramipexole and 1 mg for
ropinirole). However, augmentation may occur even at the
lowest doses of dopamine agonists.

Every doctor with an RLS/WED patient should take the time to read this entire paper. If only!!!

[EeFall]

Dr. B is totally correct about patients augmenting on even the lowest dose. I took .125 mg for several years and then problems started and I believe that is when I augmented although I think the doctor actually increased my dose to .25 mg for several weeks before he realized that I was augmenting. This was back in 2008.

[bobkat49]

Thank you all for your answers to my question! I will share this information with my neurologist. (He is still in the process of diagnosing me. He is strongly suspicious that my exposure to household pesticides has caused the problem; but he also wants to rule out sub-acute thyroiditis, which I had a year ago, as the cause.) And just to clarify, I'm the person who has fasciculations, not true RLS.

[jakesmom]

For me, there isn't just one medication that controls my WED. I take 4 medications of different classes, that, in combination, give me 100% relief about 85% of the time and the rest of the time it's still mild. Individually, 2 of those medications are contraindicated for WED, but for me, it works. I have horrible allergies and when I have to take Benadryl I dip in my extras drawer an take a pramipexole. I don't take one without the either.

My rambling point is: Ultimately I don't think the ultimate fix will be the same for any 2 of us on here. I am just thankful for all the people who showed me there are knowledgable doctors, drugs besides pramipexole, and people who will take the time to listen and point me in the right direction.

[Polar Bear]

Jakesmom - We are just so happy that we can help.

[ViewsAskew]

For me, there isn't just one medication that controls my WED. I take 4 medications of different classes, that, in combination, give me 100% relief about 85% of the time and the rest of the time it's still mild. Individually, 2 of those medications are contraindicated for WED, but for me, it works. I have horrible allergies and when I have to take Benadryl I dip in my extras drawer an take a pramipexole. I don't take one without the either.

My rambling point is: Ultimately I don't think the ultimate fix will be the same for any 2 of us on here. I am just thankful for all the people who showed me there are knowledgable doctors, drugs besides pramipexole, and people who will take the time to listen and point me in the right direction.

Until we know the cause, I believe this will remain true. There are things that are likely to work and are worth trying, but the amounts, what you take with them, and so on, often varies tremendously from person to person.

[ViewsAskew]

Thank you all for your answers to my question! I will share this information with my neurologist. (He is still in the process of diagnosing me. He is strongly suspicious that my exposure to household pesticides has caused the problem; but he also wants to rule out sub-acute thyroiditis, which I had a year ago, as the cause.) And just to clarify, I'm the person who has fasciculations, not true RLS.

Interesting. Let us know what he decides. We do have at least one other person here with facsiculations who treats it as WED. Whether it's a version of WED or something that responds to WED drugs - who knows!