Getting off mirapex

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

Re: Getting off mirapex

Post by jakesmom »

I can weigh in on the getting off Mirapex. I was taking 1.5 mg per day and had major augmentation. It took me 4 doctors before I found one who would listen. The "specialists" I tried included a neurologist, 2 GP's and a RLS specialist. The neurologist wanted to keep upping my mirapex, said you could go up to 4mg per day for non-Parkinson's patients. The GPs and the RLS specialists told me I was an addict and I needed to go to rehab to detox.
At that time, I wasn't taking any narcotics.

Due to some excellent advice from the wonderful moderators, I was put in contact with DR. B. He sent me articles and advice for my next doctor attempt, he even offered to communicate with them regarding my treatment, I found a small town GP who was willing to take me on as a new patient. I brought emails from Dr.B, his book, his treatment advice, and info from the FDA. I was, and still am, the worst RLS case my GP had ever had. She took everything I brought under advisement and agreed that I was way over medicated on Mirapex.

I say all of this to say 2 things. 1. Before you cold turkey off DA's you must have a doctor you trust and who trusts you to know your disease. 2. The best way, in my opinion, is to go cold turkey off of DAs. I did it over Memorial Day weekend. I am not going to lie, it was hell. I was manic, my dog and I spent most of that weekend walking. My family didn't call me because sleep was hard to come by and they didn't want to disturb me if I managed to sleep. I was one of the lucky ones, the worst of it was over by day 5. My doctor gave me 5 mg of Oxycodone to take twice a day. I, with her knowledge, took all 10mg at bed time.

I have been off DA's for over a year. My doc tried me on Requip once the Mirapex was completely out of my system, just to see what happened and I augmented on the 2nd day.

I no longer take narcotics. I am on a strange combo of muscle relaxers, anti seizure meds, and an anxiety med. Like others on here, my combos work for me, but for others, it would be disastrous.

If you have any questions or if I can ever help anyone with the reality of DA complications or withdrawal, please ask. I took alot of advice from the moderators here and they were with me through some very rough times. I would love to pay it forward.

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

Re: Getting off mirapex

Post by jakesmom »

Please see 2nd attempt below.

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

Re: Getting off mirapex

Post by ViewsAskew »

jakesmom! How nice to see you! I have missed you - well, not the crazy getting through augmentation, but you. Glad to hear your disease is controlled and hope you hang around with us from time to time. It is really nice of you to offer to help others - it's how I ended up staying here and becoming a moderator. Likely similar to you, I felt that if anything I said could help prevent anyone from going what I went through, it was worth it.
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 mirapex

Post by jakesmom »

Hi Views!!!!!!

I have been wondering how you guys have been as well. I'm at about 90% controlled and I am so thankful for that. Next to no daytime symptoms or neuropathy and the pain in my arm and neck is completely gone.

Ended up getting a pacemaker and was very happy that the nurses on my floor understood RLS, because when I needed to pace, they just had me check in at the desk when I would go walk so they wouldn't panic when they came in to check my vitals.

Still have the same doc. Narcotic free. My main source of relief is Flexaril. How about you? Are you still on the crazy roulette wheel of alternating meds??

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

Re: Getting off mirapex

Post by ViewsAskew »

Glad you had a great experience in the hospital. Makes is SO much easier. Also glad you did get the pacemaker.

Interesting that Flexeril works for you. It doesn't for many of us. But, I say - don't look a gift horse in the mouth!

I still am alternating meds. Works relatively well. I did get a couple of infusions - it helped for a short while, but not very long. Unsure if I will get a third.
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.

Polar Bear
Moderator
Posts: 7992
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Getting off mirapex

Post by Polar Bear »

jakesmom - how wonderful to hear that you have found such relief and a doctor who is so helpful.
and of course, excellent Dr B.
Thank you for updating us. Keep well :)
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

Orrel
Posts: 101
Joined: Sun Jun 15, 2014 12:23 am

Re: Getting off mirapex

Post by Orrel »

I have been gradually reducing my pramipexole from .5 mg to zero, using the 2 mg Neupro patch
and lately 225 mg of Lyrica. I was led to believe that as a longer-acting dopamine agonist the
patch would be a good covering agent to avoid the hell of getting off the augmented pramipexole.
Although things are fine during the day, night is a different experience with plenty of WED.
I took my last pramipexole pill six nights ago. It was only .0625 mg. Can anyone tell me if I
am on the right track? Should I just hang in there and tough it out, hoping for a light at the tunnel?
I guess the good news is that I'm off the augmented pramipexole and that I'm not suffering the pain of
the cold turkey approach. What I experience during the night is bad enough.
I am seriously thinking of going to Johns Hopkins or Dr.B. I don't think I will be able to use opioids
as I have cardiac arrhythmias and sleep apnea

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

Re: Getting off mirapex

Post by ViewsAskew »

I wish I knew, Orrel. You are the first who's been down this road as far as I know.

Dr B has said, to other patients who've asked, that cold turkey takes a LONG time to work and for the symptoms to subside. I don't recall him saying anything about doing it this way - likely because he doesn't recommend it. He might not even know because he doesn't do it this way.

If it were me, I'd tough it out for a week or so and that would be it. You've been through SO much already - it seems criminal to make you keep suffering.
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.

Polar Bear
Moderator
Posts: 7992
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Getting off mirapex

Post by Polar Bear »

To have got this far it would be a shame not to give it a bit longer.
That's my sensible head talking. I know that the reality is torture and can throw sensibility out the window.
You're already 6 nights free of pramipexole - well done. You have come through so much.
What about email to Dr B.
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

Aipulu
Posts: 60
Joined: Thu Dec 18, 2008 8:12 am
Location: Maui, Hawaii

Re: Getting off mirapex

Post by Aipulu »

It has been about 4 weeks since I started getting off Mirapex and almost 2 weeks since completly being off Miraprx. The first week I cut the dose from 1 mg to 0.5mg and added 50 mg of Ultram (Tramadol). No problem. The second week I I went to 0.25 mg of Mirapex and 100 mg of Ultram. The third week I went to 0.25 mg Mirapex for a couple of days and then went completely off Mirapex and added 600 mg of Horizant and have needed 250 mg of Ultram. These last two weeks (3 and 4)have been miserable. I get RLS symptoms particularly strong in my wrists and hands every afternoon for which I take 50 mg of Ultram. I don't take the Ultram until I get the symptoms, since I am hoping that these symptoms will go away soon. So I suffer for an hour or more until the Ultram takes effect. If I take the Ultram in the early or mid afternoon, I may get early nighttime symptoms for which I take another 50 mg Ultram. I try to take the Horizant at the suggested time of 5:30 pm but I usually am later, sometimes as late as 7;30 or 8:00. Around 9:00pm I take 100 mg of Ultram, hoping that this will be enough to allow me to sleep. I usually take another 50 mg of Ultram around 11 am since I am still experiencing some mild symptoms in the legs or arms. So I have been stuck on 250 mg of Ultram along with my 600 mg of Horizant for almost 2 weeks with no sign of abatement of symptoms.

Can anyone advise me on what might happen? WIll my afternoon symptoms eventually go away? Or any suggests on how I might do this better? I am frustrated by how long it is taking and not knowing what to expect.

Richard

Polar Bear
Moderator
Posts: 7992
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Getting off mirapex

Post by Polar Bear »

I don't think there is an answer as to how long it takes for symptoms to disappear.
Folks who have come off a DA seem to differ so much which is pretty much par for the course with regard to the treatment also, different sufferers = different results.
However, you have come so far, really exceptionally well.

My understanding of medication treatment is that it is best to 'stay ahead of the symptoms'. If the medication is taken and given time to work before symptoms would be expected, they work much more efficiently than taking a medication after symptoms have started.
If it was me..... I'd be taking my Ultram about 45 minutes before the afternoon symptoms usually start.

Why do you not make sure to take your Horizant at the suggested time of 5.30pm?
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 mirapex

Post by ViewsAskew »

Richard, have you written to Dr Buchfuhrer? somno@verizon.net. He will likely respond with his clinical perspective.

From our experience here, they will stop, but it can take at least a month. And, it's seems harder when you don't have a true opioid - tramadol is helpful, but may not be enough for the symptoms.

I feel for you - it's been years since I was in your shoes, but I still remember how hard it was.
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.

Aipulu
Posts: 60
Joined: Thu Dec 18, 2008 8:12 am
Location: Maui, Hawaii

Re: Getting off mirapex

Post by Aipulu »

Thanks Polar Bear for responding. The afternoon symptoms can come on anytime from 2 pm to 4:30pm. I don't like taking an opioid too early or I may need another before I take my evening dose about 9 pm. I think I will try taking an Ultram today at 3 pm unless the symptoms start earlier. But how do I tell if my transitional symptoms are decreasing? Here is a question. Let's say that I take 50 mg of Ultram at 3 pm, my 600 mg of Horizant at 5:30 pm and a 100 mg dose of Ultram at 9 pm and I have a pretty good day as far as symptoms. How soon and what time of day would you advise me to try the next decrease of the Ultram? And by how much? My pills are 50 mg but I can split them into 25 mg's.

Yesterday I took 300 mg of gabapentin at 1 pm, before an matinee movie. That worked in keeping me symptom free throughout the movie but I got bad symptoms on the long drive home in the late afternoon. So I took a 50 mg pill of Ultram around 4:30pm. Then my Horizant at 5:30pm and 100 mg of Ultram at 9 pm. I was doing very well and finally went to bed at midnight. Then I discovered I had some minor sensations in the hands, just enough to keep me awake. so I had to take another 50 mg of Ultram. Still I felt that perhaps my symptoms were started to abate; that I had reached a turning point. I'll find out tonight if this is true.

Richard

Orrel
Posts: 101
Joined: Sun Jun 15, 2014 12:23 am

Re: Getting off mirapex

Post by Orrel »

Has anyone tried medical marijuana as a "covering agent" for getting off a dopamine agonist?

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

Re: Getting off mirapex

Post by ViewsAskew »

Not I. My guess is that it's not enough...but it's worth a try, I suppose.
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.

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