getting off miraprex

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.
mapleleaf
Posts: 27
Joined: Thu Oct 11, 2012 5:22 pm

getting off miraprex

Post by mapleleaf »

I want to stop taking my miraprex, I have been on 2mg daily...1mg at noon and 1mg at bedtime...... I am decreasing by .25 weekly and am on 1.50 daily now.....what I am experiencing is my wed is worse...I also take Percocet every 6-8 hours which helps greatly with the leg movements...but since decreasing the miraprex I have to take 1 and a 1/2 tabs. of perc. I want to stop the miraprex because of weight gain and the research about it is not good for my heart ....my question is will the augmentation stop ...and is requip any better than meraprex? I also want to know if anyone has gone to the John Hopkins Centre for RLS in Baltimore or the Mayo Clinic in Rochester? I am from Canada and wondering if a trip to one of these centers is worth it? I am desperate for help.......

ViewsAskew
Moderator
Posts: 16237
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: getting off miraprex

Post by ViewsAskew »

mapleleaf wrote:I want to stop taking my miraprex, I have been on 2mg daily...1mg at noon and 1mg at bedtime...... I am decreasing by .25 weekly and am on 1.50 daily now.....what I am experiencing is my wed is worse...I also take Percocet every 6-8 hours which helps greatly with the leg movements...but since decreasing the miraprex I have to take 1 and a 1/2 tabs. of perc. I want to stop the miraprex because of weight gain and the research about it is not good for my heart ....my question is will the augmentation stop ...and is requip any better than meraprex? I also want to know if anyone has gone to the John Hopkins Centre for RLS in Baltimore or the Mayo Clinic in Rochester? I am from Canada and wondering if a trip to one of these centers is worth it? I am desperate for help.......


Welcome Mapleleaf,

Recent research shows that we shouldn't be taking more than .25 mg of Mirapex (pramipexole) at a time! Many of us were on these high dosages - and many of us augmented, unfortunately.

Here's what I know.

1. Decreasing it slowly is often very difficult. Dr Buchfuhrer doesn't recommend it. If you have some time, read his answers to patients at rlshelp.org. If you search on augmentation (the site is a bit tricky to use), you will see what he recommends. He usually tells people not to try to cut it slowly. When you stop it, even after you reduced it, it's still going to be difficult, so it's better just to plain stop it. The augmentation will not stop until 1 to 4 weeks after you completely stop the pramipexole.

2. The only way to stop any dopamine agonist, such as pramipexole, without horrible increase in symptoms, is to take a moderate or strong opioid when you stop the dopamine drug. You have to have enough of the opioid to cover the symptoms. Dr B suggests methadone, but it's not easy to get in many places.

3. Usually, you take the opioid for 2 to 4 weeks after stopping the dopamine drug. Then you assess with your doctor what to do next.

4. This is where having a knowledgeable doctor is pretty important, but not required. If you can find a doctor who will read how to do it, you can use a primary care doc or other doc. But, often, it's hard without someone like the docs at the best places. In Canada, Dr Montplaisir (east) is likely a good choice, but likely hard to get to see. There are some other good Canadian doctors, but not necessarily by you! In the US, the doctors worth seeing are the docs at Johns Hopkins, Dr Buchfuhrer in Southern California, Dr Becker in Texas, Dr Rye in Georgia, Dr Silber at Mayo - and many others. If Johns Hopkins is close to you and you cannot get a Canadian doc to help, I'd say it's worth it. Several people here have gone there. I fly to California - but that's because I already knew Dr B from work I do here and I have a cousin I can stay with when I go out there.

5. Requip, or ropinerole, or any other dopaminergic drug is not better for someone who's augmented. Once augmented, you can try to wait a few months and try again, but you WILL augment again. The only way to avoid that is to take it for short periods, take a break, then take it again, take a break, and so on. But, most of us try other drugs first.

There is a very good overview of how to treat WED/RLS in Polar Bear's signature. And, the link in my signature takes you to a series of posts that have some good links in it.

Ask questions, let us know how else we can help. And, hang in there. Augmentation is a pain to go through - we know your pain.
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.

mapleleaf
Posts: 27
Joined: Thu Oct 11, 2012 5:22 pm

Re: getting off miraprex

Post by mapleleaf »

thanks Ann, I will take some time to read your information .....it helps to know that someone out there understands and relates....thanks so much ....

badnights
Moderator
Posts: 5852
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: getting off miraprex

Post by badnights »

you can also find some information in the links after my name, below this post. The first one is the WED Foundation's general-information brochure on augmentation, and the second leads to a post where you can download some papers about augmentation and about the link between low ferritin and severity of WED symptoms (and risk of augmentation). People with ferritin levels under 100 should never take drugs like Mirapex/pramipexole or Requip/ropinirole, because they are far more likely to augment (that's when the symptoms get worse, not better, because of the drug you're taking to make them better).

Some of these you might want to take to your doctor - particularly the paper by Dr Buchfuhrer, and the book excerpt. If you do, read through them first and highlight the parts that are relevant to you - your doctor won't read it all, so draw his/her attention to the important points.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

jakesmom
Posts: 353
Joined: Sat Feb 09, 2013 11:01 am

Re: getting off miraprex

Post by jakesmom »

mapleleaf,

I can relate to being on that dose of Mirapex and the havoc it can wreak on your body and mind. My story is on this site, but since my last posting I have gotten a pacemaker and had to get a pain management doctor because my beloved GP can only write opiates for 3 months, which she did to get me off Mirapex, and couldn't give me a script for anymore.

I take a low dose of hydromorphone in combination with other meds that singularly should make my WED worse, but in combination, for the most part (90% of the time) I have 100% relief.

The guys on here are correct, you take WAY too much Mirapex. I can't ever take it again; my augmentation was bad and getting off it was no picnic, but I would do it all again because it was literally taking my life away.

I wish you all the best and if you have questions, please don't hesitate to ask them.

QyX
Posts: 707
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: getting off miraprex

Post by QyX »

I was tapering of Mirapex for like 3-4 times after I finally understood that I should avoid this drug or only take it 1-2 times per week.

The withdraws from Mirapex were shaking me around, totally killing any routine, causing mood swings and severe sleeping problems.

I really needed to feel severe augmentation for some time. I tried to kill the augmentation with opioids but it only made things worse. I tried to repair the damage with Clonazepam but this caused more trouble then ever.

I was taking up to 0,7 mg of Pramipexole. It was working so nice at the beginning and at some point you need more and more and before you really understand what is happening you can have a lots of problems.

With Morphine at night, Lamotrigin and Wellbutrin my situation has improved a lot.

I consider dopamine agonists much more dangerous then any opioid when it comes to treating WED/RLS.

veldon7

Re: getting off miraprex

Post by veldon7 »

I have tried a couple times to stop Mirapex after being on it for 8-10 yrs. I couldn't do it before with Percocet. I am going to a pain Dr. now and I have Oxy 10, I am going to try to stop the Mirapex .5, the week of Christmas since I am off work. I dread it, but hopefully with the Oxy and Gabapentin I can do it. :|

Polar Bear
Moderator
Posts: 7989
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: getting off miraprex

Post by Polar Bear »

I wish you so much good luck and a great deal of determination.
I have tried a couple of times and couldn't make it. However, at the time I was trying on my own with only codeine for help.
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
Moderator
Posts: 16237
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: getting off miraprex

Post by ViewsAskew »

veldon7 wrote:I have tried a couple times to stop Mirapex after being on it for 8-10 yrs. I couldn't do it before with Percocet. I am going to a pain Dr. now and I have Oxy 10, I am going to try to stop the Mirapex .5, the week of Christmas since I am off work. I dread it, but hopefully with the Oxy and Gabapentin I can do it. :|


If you have enough Oxy, it should be fine. I didn't use Oxy, so don't know how much is often used for this purpose.
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
Posts: 353
Joined: Sat Feb 09, 2013 11:01 am

Re: getting off miraprex

Post by jakesmom »

I did it with 10 mg of oxy at bed time. I was prescribed 5 mg twice a day, but since I couldn't take it at work, I took both doses at bed time. I wish you all the best, even with 10 mg of oxy I was manic, I walked my dog alot, I paced, I ate like a fiend, couldn't focus and just felt miserable. It was the worst week of my life, then I got used to the pain, by weeks 2-3 the pain started to let up.

I hope your withdrawls are mild and pass quickly. It's horrible, but it's worth it if you are augmenting badly; just don't give up, it will get better.

God Bless you and watch over you.

sniel2000@yahoo.com
Posts: 10
Joined: Tue May 08, 2012 10:58 pm

Re: getting off miraprex

Post by sniel2000@yahoo.com »

I'll try again. The medicines are worse than the problem and they increase the symptoms while you are thinking that the RLS is just getting worse. I was ready to jump off a bridge. I decided to just stop.

I went off Ropinerole in Feb. of this year. It has been pure hell....BUT I am better now. Be ready to not sleep at all. In my case, the RLS went into remission but it could not be enjoyed as I got major, major fatigue. I could not stay awake....could fall asleep standing up, couldn't drive very far. Had headaches for months. Lost 10 lbs. It is Dec. now and my rls returned a few months ago...but not nearly as bad as when I was on meds. Sometimes I'm just restless without restless legs.....I sleep now and then but mostly wake up many times during the night. But it is doable. I am retired now and often get up, make decaf, have toast and then I can return to bed for a few hours of good sleep. It makes all the difference. I have been taking one or 1 1/2 Vicoden to get me through the nights...it works fairly well. I decided to go off that now and have had two nights of restlessness....but I am determined to get totally clean and deal with the RLS until the time when there are better answers. Don't drink wine or eat sugar after 3 PM.

Sandy

badnights
Moderator
Posts: 5852
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: getting off miraprex

Post by badnights »

I decided to go off that now and have had two nights of restlessness....but I am determined
It can be a tough go without meds. Every one of us has to look at our lives and balance the negative effects of the meds (including augmentation) against the negative effects of the disease. What a choice.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

veldon7

Re: getting off miraprex

Post by veldon7 »

Thanks everyone, I just get so sleepy that I can't keep walking all night, and end up taking .25 of Mirapex. I can't take too much Oxy, the 10 mg doesn't help much even with Gabapentin! I'll keep trying. God Bless everyone!

hercman4239
Posts: 48
Joined: Wed Oct 16, 2013 11:19 pm

Re: getting off miraprex

Post by hercman4239 »

Well Guys here I am again. If you remember I was on Mirapex and went thru Augmentation and back on Mirapex only with smaller dose(1 mg/day) Well it was partytime for a while(no RLS symptoms). Well partytime is over and I'm not sure what to do. My Dr is very helpful and will work with me but not sure if he can do much.
Right now I take 1/2 mg Mirapex twice a day. I also take (3) 300mg Gabapentin /day.

While I was going thru Augmentation my Dr gave me a small prescription for clonazepam .5mg but never tried them and a few Neupro patches samples but never did try them because I wanted to get back on Mirapex.
I need to get off here my legs are churning
hercman

ViewsAskew
Moderator
Posts: 16237
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: getting off miraprex

Post by ViewsAskew »

hercman, unfortunately once you augment, you can never take that same drug regularly again. You might be able to try a different dopamine agonist, but chances are you'd augment on that. It sounds like you like pramipexole because when it works, it's good for you. The problem is that it's never going to work for very long before you're right back in the same position.
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.

Post Reply