Pramipexole Problems

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EeFall
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Re: Pramipexole Problems

Postby EeFall » Thu Feb 21, 2013 5:48 am

ViewsAskew wrote:
EeFall wrote:As someone with severe RLS and augmenting on Mirapex right now I could care less about the other problems with it. I have not slept for days and would pay almost any price to be able to take it again. It has literally saved my life many times over the dozen years. Yeah I have gained 70 pounds since then but I am still alive. It is a miricle drug to me. Just like the other drugs that work and get complaints like my methadone it gets more difficult to obtain prescriptions because of bad press. This Mirapex has given me years of peace.


I guess my opinion is very different because I augmented within a week of taking it and the last ten years have been like being on a merry-go-round operated by the devil. I wish I'd never taken it and hope I never have to take it ever again.


I'm on the merry-go-round myself it is just that I have used up everything that would work, only pramipexole was I able to go back to. Requip did to me what mirapex did to you. It is crazy how these meds are so different for each individual. I am looking into getting maryjane medical approval, about the only thing left that may allow me to sleep if this doesn't work.

Chipmunk
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Re: Pramipexole Problems

Postby Chipmunk » Thu Feb 21, 2013 3:12 pm

Can you alternate the DA with another med, like Ann (viewsaskew) does? I think of that only because you said that you were able to stop it and start taking it again, which indicates to me that perhaps an intermittent dose would prevent your body from escalating the WED.
Tracy

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jakesmom
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Re: Pramipexole Problems

Postby jakesmom » Fri Feb 22, 2013 12:41 am

I am so frustrated I could cry. With my copy of A Clinical Study of RLS by my side, I wrote down all the signs of augmentation I could justify, wrote down the supporting information about augmentation and the side effects I had from Mirapex, sleep deprivation, cardiac issues, symptoms starting earlier and going to my arms. Notes in hand, I call the neuro, I explain to her nurse how I am afraid to drive more than 15 miles at a time for fear of falling asleep, how it is affecting my job, how the patch caused insomnia, everything.
With high hopes I awaited a call back from the nurse. She calls me back, starts talking about changing my dose of Requip and adding tramadol. I tell her I'm not on Requip, she insists I told her I was. She tells me the doctor has gone for the day and she will have to talk to her tomorrow about Mirapex. She also said she can't call in the tramadol because you can't mix it with Mirapex.
Moral of my frustrating story: the neuro plans to up my Mirapex dose and add a new drug for pain. Why is she not listening???

Polar Bear
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Re: Pramipexole Problems

Postby Polar Bear » Fri Feb 22, 2013 2:47 am

Nurse says that you can't mix tramadol with mirapex.
I am on Requip which is the same class of drug as mirapex and I take tramadol with it.

I wonder why up the mirapex if he is going to add a new drug for pain.
The same dose mirapex or a little less might work well if it is supplemented with a pain med.

However, I googled and got this on Drugs.com regarding the interaction between tramadol and mirapex (pramipexole)
Using tramadol together with pramipexole may increase side effects such as dizziness, drowsiness, and difficulty concentrating. Some people may also experience some impairment in thinking and judgment. You should avoid or limit the use of alcohol while being treated with these medications. Avoid driving or operating hazardous machinery until you know how the medications affect you. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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debbluebird
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Re: Pramipexole Problems

Postby debbluebird » Fri Feb 22, 2013 6:17 am

You are right PB. I also looked up Requip and Tramadol and it says the exact same thing. I understand you frustration Jakesmom, I have experienced the same thing. I ended up changing doctors. It doesn't make any sense increasing the mirapex. I also went through that too with a doctor. I didn't know at the time about augmentin. I went through hell. I don't recomend it. My WED/PLMD symptoms got worse and the doctor just couldn't understand it. Duh They just kept adding drugs until I was in such a mess. I finally found a doctor who put me on methadone and then I started weaning myself off the other drugs. I think I was on five or six at the time. I was so messed up I don't really remember. The new doctor couldn't believe how drugged up I was.

jakesmom
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Re: Pramipexole Problems

Postby jakesmom » Fri Feb 22, 2013 11:13 am

Thanks all,

You would think when I told her my quality of life and my job were being seriously impacted she would get it.
If she increases my dose and adds a painkiller, I will be taking upwards of 15 pills a day. I know they interact. I had to take an OTC sleep aid last night in conjunction with Klonopin, Ambien, Carb Levo, and hydroxyzene just to get some rest. Slept all night but for one trip to the girls room, but now I feel drugged and my legs are screaming at me to get up and walk the dog.
It's just too much. I'm glad she is going to jack with my meds over the weekend so I can see how the changes are going to affect me.

Again, thank you all for the concern and the research.

ViewsAskew
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Re: Pramipexole Problems

Postby ViewsAskew » Sat Feb 23, 2013 1:24 am

jakesmom, have you written to Dr Buchfuhrer? somno@verizon.net, I'm pretty sure.

Explain it, ask his opinion, show it to the doctor. if needed, ask if Dr B will explain it to the doctor if the doctor will call him - he often will if he's got time.
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.

jakesmom
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Re: Pramipexole Problems

Postby jakesmom » Sat Feb 23, 2013 6:07 am

Thanks ViewsAskew,

I haven't written him, but I will.
I talked to my neuro's nurse. She is upping my pramipexole dose to 1.5mg in the morning and 1.5mg at bedtime and gave me tramadol 50mg for breakthrough pain. She took me off all sleeping aids and said hopefully this will help. Theory being maybe one of those are causing my problem. She said the tramadol is not a long term solution and I couldn't have refills.
I asked the nurse point blank if I was ever going to be taken off DA's. She said yes, I would have to. She told me to make an appt, next available being in May, but call her back if the new dose of pramipexole wasn't working. She told me to write down all my questions, symptoms, problems and concerns and bring them with me because the doc and I needed to discuss a new course of action.
The nurse called in the scripts and I noticed the pramipexole was a totally different color. I wonder if getting the same med from a different company will affect how well it works?
At any rate, the nurse was really nice, told me to give the new dose a week and see if it helped. She said my sudden change in symptoms and severity was not something they were taking lightly.
When I go back for a follow up, I am going back, book and notes in hand. From what I have read, and someone please correct me if I am wrong, but if i am augmenting isn't adding more and more pramipexole fairly pointless?
No sleep meds. Wow. Over 2 years on Ambien and off cold turkey. What a fun weekend this is gonna be.

debbluebird
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Re: Pramipexole Problems

Postby debbluebird » Sat Feb 23, 2013 6:13 am

Oh wow. Yes, increasing your dose doesn't help if you are augmenting. I went through that and it wasn't fun. Plus going off ambien on top of that. I'm so sorry you are going through this.

jakesmom
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Re: Pramipexole Problems

Postby jakesmom » Sat Feb 23, 2013 6:43 am

Thank you. I am thankful she made this change on a weekend, but I hear Ambien withdrawl can be nasty.

ViewsAskew
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Re: Pramipexole Problems

Postby ViewsAskew » Sat Feb 23, 2013 7:19 am

jakesmom wrote:Thanks ViewsAskew,

I haven't written him, but I will.
I talked to my neuro's nurse. She is upping my pramipexole dose to 1.5mg in the morning and 1.5mg at bedtime and gave me tramadol 50mg for breakthrough pain. She took me off all sleeping aids and said hopefully this will help. Theory being maybe one of those are causing my problem. She said the tramadol is not a long term solution and I couldn't have refills.
I asked the nurse point blank if I was ever going to be taken off DA's. She said yes, I would have to. She told me to make an appt, next available being in May, but call her back if the new dose of pramipexole wasn't working. She told me to write down all my questions, symptoms, problems and concerns and bring them with me because the doc and I needed to discuss a new course of action.
The nurse called in the scripts and I noticed the pramipexole was a totally different color. I wonder if getting the same med from a different company will affect how well it works?
At any rate, the nurse was really nice, told me to give the new dose a week and see if it helped. She said my sudden change in symptoms and severity was not something they were taking lightly.
When I go back for a follow up, I am going back, book and notes in hand. From what I have read, and someone please correct me if I am wrong, but if i am augmenting isn't adding more and more pramipexole fairly pointless?
No sleep meds. Wow. Over 2 years on Ambien and off cold turkey. What a fun weekend this is gonna be.


Wow, waiting until May isn't what I was hoping you were going to say!

Per increasing the dose - initially this work pretty well, but I understand it to be less effective when you are "more" augmented. It may help, but it's just going to require more again in the near future even if it does. So,initially, I only needed .125 mg of Mirapex each night. I augmented in a week. So, I initially just took it earlier. Then it started earlier. Now I took two .125 doses split between early evening and bedtime. Then it happened earlier. So, the first dose was earlier. Then it was more severe. So, the dose was increased at night. Then it was earlier still. So, three doses. Then worse - so each dose was increased. Over 12 -14 months, my nightly dose went from .125 to .75 and one dose became 3, etc.

But, at the end of this mess, it got so that the increase didn't help so much.

If you get a chance, tell us what dose you started on, how many times a day, etc. then tell us how many increases, what doses, when and why the increase.
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.

jakesmom
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Re: Pramipexole Problems

Postby jakesmom » Sat Feb 23, 2013 9:47 am

I started with the starter pack about 10 years ago. If I recall it goes up to .5 mg. For about 5 years that dose worked for me. Taken once at bedtime. I learned quickly that I had to have food in my stomach when I took it or it would cause my blood pressure to drop (68/42) was my lowest ever, causing me to literally pass out. I was increased to 1 mg of pramipexole. about 4 years ago. During this 10 year span I have slowly gained 80 lbs. The 1mg dose taken at bedtime worked for about a year. During this time I continued to have passing out episodes and have a heart monitor implanted in my chest to track my heart rate because the need for a pacemaker was possible. About 3 years ago, I began to need my dose earlier and earlier. My GP recommended taking it mid afternoon before the symptoms started so they wouldn't be so severe. It was a good plan but if I forgot any my legs started before I took the dose, it was sheer hell and nothing controlled it. About 2 years ago was the point at which I started taking 1mg in the mid morning and another 1mg at night if needed. I was also put on Carb Levo, klonopin, Ambien and tizanidine (as needed). That worked until about 6 months ago. I started having constant pain in my upper right forearm. I was given naproxyn, which didn't work. This led to my latest return trip to the neuro and the 10mg of Ambien was replaced with 3mg of Lunesta and the Neupro patch replaced the pramipexole . The patch dose that controlled my symptoms made me nauseous and gave me insomnia, so I went back to pramipexole and here we are. If I list everything I take and doses, would you mind to give me an opinion if you think it's a lot?

ViewsAskew
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Re: Pramipexole Problems

Postby ViewsAskew » Sat Feb 23, 2013 7:04 pm

I am not a doctor - so take this with that in mind.

First, they now know that there can be heart problems associated with pramipexole/Mirapex. Given your history, that seems a big red flag. I posted a link awhile back - not sure where it is. Did a quick search on google and came up with a lot of links including this one: http://www.fda.gov/Drugs/DrugSafety/ucm319779.htm

Second, the disease could be progressing, but the earlier in the day stuff along with worse at night is classic augmentation. If it were me I'd be questioning if you need all of this - it really may all be related to augmentation. It might not - but the only way to know is to stop all dopaminergics - no patch, Requip, Mirapex or carbidopa/levadopa (Sinemet). Then see what happens.
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.

jakesmom
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Re: Pramipexole Problems

Postby jakesmom » Sat Feb 23, 2013 10:33 pm

If I stop all meds, other than agony, what does that reveal? From my reading, if my symptoms get better it means I am augmenting and if they don't improve, it's means the severity of my WED is advancing, correct? How long does it take to know? I can't imagine cold turkey is pleasant.

I truly believe my long term run with pramipexole is causing my cardiac symptoms. And , I am amazed that my neuro isn't listening when I try to say that!!!

Can the same drug made by a different company affect the way it works? Reason I ask is the new pramipexole is pink and my old one was white. I looked it up using a pill identifier and its the same drug, different manufacturer. 1mg of the pink pill knocks me on my rear end. White one doesn't help, pink one is potent.

ViewsAskew
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Re: Pramipexole Problems

Postby ViewsAskew » Sat Feb 23, 2013 10:46 pm

jakesmom wrote:If I stop all meds, other than agony, what does that reveal? From my reading, if my symptoms get better it means I am augmenting and if they don't improve, it's means the severity of my WED is advancing, correct? How long does it take to know? I can't imagine cold turkey is pleasant.


It reveals just what you said - how severe is it. You can't know as long as you take this drug. You may be medicating the augmentation, not the disease. Or, maybe this is the disease. It takes from a week to a couple months to know. That's why the more knowledgeable doctors use an opioid. You need something during that time to cover symptoms.

jakesmom wrote:I truly believe my long term run with pramipexole is causing my cardiac symptoms. And , I am amazed that my neuro isn't listening when I try to say that!!!

Can the same drug made by a different company affect the way it works? Reason I ask is the new pramipexole is pink and my old one was white. I looked it up using a pill identifier and its the same drug, different manufacturer. 1mg of the pink pill knocks me on my rear end. White one doesn't help, pink one is potent.


Yes, I am surprised, too. To me, that's a BIG flag that you need a new doctor.

While generics are supposed to be the same, they are allowed to have enough differences that, for some drugs, the differences can be huge.
Ann - Take what you need, leave the rest



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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.


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