MIRAPEX AM TRYING TO WEAN MYSELF OFF OF IT

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ctravel12
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MIRAPEX AM TRYING TO WEAN MYSELF OFF OF IT

Postby ctravel12 » Sun Jun 29, 2008 3:02 pm

Well I know most of you know me as I have been around here almost two years, in fact, it will be two years next month. I happened to find this discussion board by per accident but has been a life saver for me.

I was on requip at that time and was augmenting real bad and finally after 10 months of horrid pains I finally went to a neurologist (who by the way has rls) and got me off of requip and am now taking mirapex. I was taking the lowest dose which is .125mg and at the the time was taking 1mg of clonazapem. For a while I was doing fine. In fact, when I first saw my neuroloigst I just kept kept on taking clonazapem and he wanted me to start taking mirapex right away and gave me a sample bottle.

Well I did not want to take this as I read all of the side effects and did not like them. Well he kept on asking and asking and finally I decided I would take it and for the first year it was fine,.

Then in the beginning of this year I was getting the symptoms in my left leg usually around 7pm my time whether I took the meds or not.

I had an appt to see him in April (was going on a trip and did not want to mess it up) and told him what was happening. So he had me up the med but very little. Like I said I was taking .125mg and then he had me take an extra 1/4 of a pill at 12 noon, 1/4 of a pill at 4 pm and the 1/2 of the original .125 at 8 pm and the last 1/2 of the .125mg about an hour before bedtime along with the 1mg of clonazapem.

This did help somewhat; however did have a couple of bouts on our trip but not too bad.

Had another appt with him on the 18th of June and he asked how I was doing. I told him that I was still getting the symptoms every night and would last from 1-3 hrs. He suggested that I increase the symptoms and did not really want to do that so decided against that. He did however decrease my clonazapem fronm 1mg to .75mg and have done fine with that.

Well this past week, my symptoms seemed to get worsed and even got them one day around 2pm but did not last that long. The other night I started to get the symptoms in both legs at the same time and it lasted for 5 hrs.

Well I am trying to wean myself off of Mirapex and see how it goes. Last night I did not take the full .125mg plus the other two times that he had me take. I only took 1/4 of the pill and then 1/2 of the original .125 mg.

I had some symptoms but not too bad. I am going to see how it works.
I am afraid of augmenting on this med like I did requip.

If anyone has anything to add, I am open for suggestions.

Thanks for listenting to me.
Charlene
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Postby ViewsAskew » Sun Jun 29, 2008 11:53 pm

Oh, so sorry to hear this Charlene.

I have heard of the following ways to deal with this. Maybe you and your doc can agree on one.

1. Immediately switch to Requip (stop Mirapex completely). Even though you augmented on it, some people are very successful doing this. It's even mentioned in the newest book by Hening, et.al as a method for controlling this problem. Stay on Requip only for 3 weeks or so, then try Mirapex again and see what happens.

2. Immediately switch to an opioid - only for two to three weeks. Stop the Mirapex and "cover" with the opioid. This will help in two ways: it will cover the potentially increased symptoms while your body freaks out from not having the Mirapex any longer and it will allow you to be free of any dopamine agonist for awhile. After a few weeks, resume the Mirapex and see what happens.

The Hening, et.al book "Clinical Management of Restless Legs Syndrom" outlines both of these options.

When I augmented I was able, by myself, to reduce the Mirapex from the high of .75 mg to .125 mg. I eliminated many of the symptoms for awhile, but they all eventually came back. I was never able to stop the Mirapex completely on my own - the intensity of the RLS was intolerable.

I hope you find a solution....and soon.
Ann - Take what you need, leave the rest

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Postby ctravel12 » Mon Jun 30, 2008 2:19 am

Ann thanks for your suggestions. I do not have any requip on hand right now and to be honest it scares the daylights out of me as I really did horrible with requip.

I only took a small amount of the mirapex last night along with .75mg of clonazapem and was able to sleep not too bad. When I woke up this morning I felt like someone had walked all over my legs and then the pain went away. Then I felt real tired this afternoon and was not sure if I could lay down but was able to but had the same feeling in my legs when I woke up.

I took just 1/4 of the pill of Mirapex and it stopped the pain but now they just seem to ache sitting, standing and even walking around.

I will try another night and see and if it gets worse will get ahold of my dr. One thing I know for sure is he will suggest to increase the meds and that I will not do. I think that is where the problem started. However it was not a large increase so do not know what is the problem.

I know right now we are having very hot weather (115 + temps) and that may be the problem. I feel this is a "Catch 22"

Thank you again. I really do appreciate your help.
Charlene

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Postby ViewsAskew » Mon Jun 30, 2008 7:47 am

Boy, I sure relate to the Catch-22.

For a long time I've thought I was developing some tolerance to methadone. I want to stop it for a few weeks and then start it again to see if I can lower my dose.

But, to do that, I'd have to use a different class of drug. The benzos don't touch the RLS. The anti-seizures don't either. That leaves me with dopamine agonists. Since I augmented in less than two weeks on Mirapex and one day on Sinemet and Requip, I don't see how I could possible use this class to do it.

I could do it, but my symptoms would be worse by the time I stopped it a few weeks later. Since they'd be worse, I'd need more of the opioid to control it.

Huh. Seems like I'd end up at the starting point.

Per the Requip, it might help to decide by thinking about it this way. How long did it take you to have a bad time with it? If it was days, it wouldn't work. If it was weeks, it might work. If it was months, it probably would work. Since your receptors have probably reset themselves long ago, whatever the Requip did is undone, so to say. So, if the problems took a long time to start and you only have to try it for a few weeks, you'd more likely be fine. But, believe me, I totally understand reluctance to find out! It took me 2 1/2 years before I'd try Mirapex again. Then when I did, it was only a tiny amount.
Ann - Take what you need, leave the rest



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cornelia

Postby cornelia » Mon Jun 30, 2008 10:35 am

'ending up at the starting point'.... that's what Bob Waterman I think wrote in an editorial, that after 10 years have used all the different meds he was back to where he started. It's scary.

Corrie

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Postby ctravel12 » Mon Jun 30, 2008 1:02 pm

When I was given the prescription for the requip it was 2mg and within a week I started to augment. That is why it is scaring me.

I took the same dosage last night that I took the night before and went right to sleep; however within an hour I woke up and could not keep my legs still. the pain was bad so I got up and took another 1/2 of the mirapex and finally went back to sleep.

When my dr kept on insisting on me taking the mirapex he was saying that I would sleep better and I did now and then but now my body is used to Mirapex and do not like that feeling. I was not doing bad just being on clonazapem. I did have some symptoms but not like I have been having.

I should of never started this mirapex and also I have put on some weight (I am not over weight) but cannot seem to take it off no matter what I do. I exercise five (5) days a week and do watch my portion control. Why does this med do this. I just do not want it to get it worse that is one of the reasons, besides having the symptoms every night too, that I want to get off of this stupid pill.

I looked up some of the opioids and some of them have codeine and I am extremely allergic as it makes me violently ill. I know once a dr gave me vicoden(sp) and the pharmacist said it had a small amount of codeine and within two days I about lost it.

I sure do not like this trial error crap.

Thank you again for your comments. I appreciate it more than you realize. I know this morning when I got up my legs did not ache so go figure.
Charlene

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Postby ViewsAskew » Mon Jun 30, 2008 6:42 pm

I'm not a pharmacist, but I do remember reading that not all opioids are made the same. I seem to remember that there are three distinct analogs - or types. Only one type has codeine. You'd just need to know which ones do NOT have it.

I projectile vomit when I take Vicodin...yet I have no problems with methadone. So, I guess that the above must be true!

It really does suck, Charlene. I can remember feeling exactly as you are - I wished I'd NEVER started on this route. But, we did. We can't change it. And, I did have many nights of sleep that I wasn't having prior to being on the DAs. So, with a shrug of my shoulders, I had to decide it was not helping me to do the coulda, woulda, shoulda, lol. My only concession to reviewing the past is to hang out here and see if I can prevent others from going through the misery I did by at least identifying augmentation a little more quickly. I still wonder once in a while if I'd have refractory RLS if my doctor had not increased the Mirapex time after time and if someone would have helped me to get off the dratted drug more quickly. Preventing it from happening to someone else doesn't cure me, but at least I know that one more person has been spared.
Ann - Take what you need, leave the rest



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Postby jan3213 » Tue Jul 01, 2008 12:33 am

Charlene, you have my deepest sympathy and empathy!!! I, like you and Ann , wish I had NEVER started on Mirapex, but--at the time--I would have taken poison if I thought it would help. I've been on the stupid stuff so long now, I don't think I can get off of it. And, I have put on the weight!!

Ann, you remember when I tried to cut back on Mirapex, don't you? You tried your best to help me, but I couldn't stand it. I thought I was literally going to go crazy. My RLS was so bad, if I had been on a tall building, I might have jumped off.

I don't know what the answer is--not for me, anyway. It's easy to feel hopeless, I guess. I wish you the very best, Charlene. I wish I could do something for you. Here's a (((((((((((((((((((hug)))))))))))))))))))).

Love
Jan
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Postby ctravel12 » Tue Jul 01, 2008 12:43 am

Jan you are so sweet and really appreciate what you just said. It is such a scary thing and like I told Ann it is like a "Catch 22". I am just taking .125mg of the Mirapex not the extra that the dr had me taking.

Still having the symptoms every night and in two weeks we are going to go to Colorado (driving) and hope that it goes well.

I will take all the hugs that I can. Thank you so much.

I will keep everyone posted and thanks again to both you and Ann.
Charlene

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Postby ctravel12 » Tue Jul 01, 2008 1:16 pm

ViewsAskew wrote:
It really does suck, Charlene. I can remember feeling exactly as you are - I wished I'd NEVER started on this route. But, we did. We can't change it. And, I did have many nights of sleep that I wasn't having prior to being on the DAs. So, with a shrug of my shoulders, I had to decide it was not helping me to do the coulda, woulda, shoulda, lol. My only concession to reviewing the past is to hang out here and see if I can prevent others from going through the misery I did by at least identifying augmentation a little more quickly. I still wonder once in a while if I'd have refractory RLS if my doctor had not increased the Mirapex time after time and if someone would have helped me to get off the dratted drug more quickly. Preventing it from happening to someone else doesn't cure me, but at least I know that one more person has been spared.


Ann thank you for saying this. I needed to hear that. I only took my normal dosage of mirapex .125mg last night (1/2 pill at 5pm and the other 1/2 pill about 1 hr before bedtime) and it seemed to be ok. I am not saying it won't happen again but you have given me alot to think about.
Charlene

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Postby Polar Bear » Tue Jul 01, 2008 8:55 pm

Charlene, good luck, I would not be so brave as to try and reduce without the help of an 'alternative'.
Best wishes my friend.
Betty
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Postby ctravel12 » Tue Jul 01, 2008 10:10 pm

Hi PB thanks but I am not totally off of Mirapex. I am not just taking the extra doses that the dr told me to take. I do not know if it is just my imagination, but so far I am doing fine as I am only taking .125mg which I had originally took in the beginning.

I am taking 1/2 of the pill around 5 pm the other half about an hour before bedtime with .75mg clonazapem. So we will see. I would like to get off of it period but would not do it without taken another alternative. Thanks for being concerned about my welfare.

I do not know what I would do without this group and would not want to find out. You people are so wonderful and love you all.
Charlene

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Pain meds for rls.

Postby mackjergens » Wed Jul 02, 2008 6:44 am

Have you ever tried Ultram(tramadol) it does not have codiene in it. It has worked very well for me. Its also not really considered a hard pain med, and I think Drs are more willing to prescribe it. Certainly worth a try. I also take hydrocodone and it has no codiene. It is a class "C"(controlled) drug. I rotate between the two, hopefully so I will not have to increase the amount of pills or have to increase the mgs. This has worked for me for almost 3 yrs.. actually I dropped from 90 hydrocodone to 31 a month, by also using the tramadol.

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Postby ctravel12 » Wed Jul 02, 2008 1:28 pm

Hi Mack thanks for the suggestions. It was a bad night for me last night so will call my dr and see what he says.

Thanks again and appreciate everyones input.
Charlene

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Postby Polar Bear » Wed Jul 02, 2008 3:49 pm

Good luck with your doc, Charlene. I am lucky I have no real pain, just crawlies and a sometimes dragging feeling.

Apart from my requip, Ambien gets me to sleep and I get about 5 - 6 hours total on a good night. 1 Ambien, 2 to 3 hours sleep, another Ambien, another 2 to 3 hours sleep. Fortunately it works quickly, tho doesn't last very long.

Oh... the blissful thought of 8 hours sleep in one beautiful long stretch... :roll:
Betty
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