As some of you know, I've had a difficult time with Mirapex. I have a hypothesis that my current state of RLS was caused by the Mirapex in the first place and that if I get off of it, my RLS will be reduced back to the level it was at (plus whatever natural progression that may have occurred during the two years I was on the drug). What is most strange to me is that I can't seem to get off of it. Either the drugs I try when I reduce it do not work (Requip, hydrocodone, Klonipin, Neurontin and any combo of those along with some benzos thrown in for good measure) effectively to stop the RLS or I can't get docs to give me stronger drugs at a high enough dosage that would be more effective in stopping it.
Recently my doc gave me some Darvon. But only one 65 mg tablet a day. Not nearly enough to substitute for the Mirapex. So, I tried an experiment. I reduced the Mirapex for 2 days, then on the third day I stopped it completely and upped the Darvon based on the RLS.help dosing guidelines. I knew I would only have enough Darvon for a week, but was sure this was long enough to test my premise.
But, it didn't. I was in RLS hell. Not only did the Darvon not eliminate the symptoms, but they were worse than usual. So, I went to my old primary care doc - drove 60 miles to see him. I explained it all to him and told him I wanted enough opioids for two weeks to we able to stop the Mirapex and see what happened. He agreed and I left with a script for Ultram.
So, last night was night 3 without the Mirapex. I took the first Ultram in the early evening and so far so good. By 10 PM I took another, knowing that I wanted to go to bed soon. So far so good. As soon as I started to drift off, my right legs started unbelievable jerks. This is RLS and PLMD conbined into living hell. I had to start walking and my legs would buckle as I was walking when I'd get these incredibly strong RLS/PLMD things.
At 11 PM, I took 300 mg of Neurontin, hoping for some help. By 1 AM, I was still in hell. I took the two remaining Ultrams. Nothing. At 2 AM I made a decision to take .125 of Mirapex, 1/3 of the dose I had been taking. I did this because I have to work this week and have a client expecting a deliverable. If I don't sleep all week, I won't be able to get it done. Within 1 1/2 hours of taking the Mirapex I was sleeping and slept soundly until 11 AM.
While I waiting for the Mirapex to work, I did some more research online. I came across info about not stopping Neurontin suddenly because it could cause seizures (this info was for people taking it as an anti-seizure drug). So I looked for similar info on RLS. And I found it. People who are taking Neurontin, Codiene (or similar), and the DAs and stop them all can go through a period of 3 days to a week where the RLS will be much worse than it was.
I was on day 3 when I decided I couldn't take it anymore due to work obligations. For all I know, it could have been better the next day. . .guess I will never know. But this is good info to have. What I wasn't able to find out is if this happens when stopping regardless of tapering off or only if you stop abruptly. So for me next test, I will take the 1/3 dose of Mirapex for a week. Then I will cut than in 1/2, so I will only be taking 1/6 of the original dose. I'll do that for a week and then cut it out and see what happens. If I go through RLS hell, I guess there is withdrawal regardless.
Ann
(happy to have slept last night, unhappy she is still taking Mirapex)[/i]
Stopping meds
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ViewsAskew
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cornelia
Sjeminee, Ann, as we say in The Netherlands. What a story! My mind is in a daze, so I hope I understood it well.
You are messing with meds, so I really, really think that is what makes the RLS bad. In my opinion RLS will be severe every time you cut down on a DA, I am almost positive. So I think it is better to stop cold turkey, but in that case you have to have a good replacement.
Well, it is interesting. Hope you will get your work done and have a happy client.
Corrie
You are messing with meds, so I really, really think that is what makes the RLS bad. In my opinion RLS will be severe every time you cut down on a DA, I am almost positive. So I think it is better to stop cold turkey, but in that case you have to have a good replacement.
Well, it is interesting. Hope you will get your work done and have a happy client.
Corrie
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I would have thought the same thing, Corrie. That if I had a good replacement that it would have worked. But it didn't! The first night I tried Darvon at a relatively high dosage WITH clonazapem (2 mg). It didn't make much of a dent.
The second night was even worse. I took the maximum dose of Ultram, added some Neurontin and 2 mg clonazapam and my RLS was some of the worst I've ever had.
So, I'm at a loss. Maybe there isn't anything to make the transition go smoothly for some people. At least it's looking that way for me!
Oh, here's the info I found on withdrawal from DAs:
"Withdrawal Symptoms. Patients who withdraw from these agents typically experience very severe RLS symptoms for the first two days after stopping. RLS eventually returns to pre-treatment levels after about a week. The longer the drugs have been taken, the worse the withdrawal symptoms."
The article is at: http://www.ucdmc.ucdavis.edu/healthcons ... 095.shtml#
Ann
The second night was even worse. I took the maximum dose of Ultram, added some Neurontin and 2 mg clonazapam and my RLS was some of the worst I've ever had.
So, I'm at a loss. Maybe there isn't anything to make the transition go smoothly for some people. At least it's looking that way for me!
Oh, here's the info I found on withdrawal from DAs:
"Withdrawal Symptoms. Patients who withdraw from these agents typically experience very severe RLS symptoms for the first two days after stopping. RLS eventually returns to pre-treatment levels after about a week. The longer the drugs have been taken, the worse the withdrawal symptoms."
The article is at: http://www.ucdmc.ucdavis.edu/healthcons ... 095.shtml#
Ann
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An update: I wrote to Dr Buchfurer and explained the situation. He agreed that for some people stopping the DAs was very tough. In his experience, he finds that a mild opioid like Darvon is not enough. He indicated that in his practice he would use methadone for two weeks in this situation. Well, now, any of my docs giving me methadone is highly unlikely. I will go see my PCP tomorrow with Dr Buchfurer's letter in hand. I don't know that it will work, but I'll try. At the very least, maybe he will give me a much stronger opioid.
Ann
Ann
Jimmineeeeee Christmas Ann
Geeeeezzzz Ann,
Hugs to you girlfriend.
I can't say that I blame you for trying to do something. I'm so glad your doc listened and at least was willing to try.
You know I couldn't tell you for sure that I had worse RLS when I quit Mirapex cold turkey, because it was the sickest migriane I'd had in years. So that several days I did not take it, I was all torn up anyway. I know on the 4-5 th day I had not taken it, I did try 1/2 a percodan and I had relief from many of the pains I was having. So that is what I stuck with it at 1/4 of a tab. It's not 100%, but it made things managable for me.
Yes, since Feb. I have been taking been taking 1/2 tab most nights, but life happened harder than normal and I adjusted it that way. I am having more problems with movement at night, enough for hubby to mention it. PLMD may be in my file, lol, if I'd submit to a sleep study. That's not a pleasant thought, nor am I sure that I would take much more than I take now anyhow. Would if it meant sleeping alone....hmmmmm?
I'm not shocked that the Mirapex had that warning. I was careful to have my liver count done often while I was on it, but never thought much about what could happen if I stopped cold turkey. I have noticed a rise in headaches without it, but not willing to go back.
I did think that it was probably not my drug of choice after the third time my doc raised the dosage. It did seem to make things worse after the honeymoon wore off, which was generally a couple of weeks, maybe 10 days.
I sure hope that the PCP is willing to give you an honest chance at something different. Hopefully, you'll get a chance at good rest even when your not working. My thoughts are with you and my fingers crossed.
Hang in there and keep us updated.
Hugs to you girlfriend.
I can't say that I blame you for trying to do something. I'm so glad your doc listened and at least was willing to try.
You know I couldn't tell you for sure that I had worse RLS when I quit Mirapex cold turkey, because it was the sickest migriane I'd had in years. So that several days I did not take it, I was all torn up anyway. I know on the 4-5 th day I had not taken it, I did try 1/2 a percodan and I had relief from many of the pains I was having. So that is what I stuck with it at 1/4 of a tab. It's not 100%, but it made things managable for me.
Yes, since Feb. I have been taking been taking 1/2 tab most nights, but life happened harder than normal and I adjusted it that way. I am having more problems with movement at night, enough for hubby to mention it. PLMD may be in my file, lol, if I'd submit to a sleep study. That's not a pleasant thought, nor am I sure that I would take much more than I take now anyhow. Would if it meant sleeping alone....hmmmmm?
I'm not shocked that the Mirapex had that warning. I was careful to have my liver count done often while I was on it, but never thought much about what could happen if I stopped cold turkey. I have noticed a rise in headaches without it, but not willing to go back.
I did think that it was probably not my drug of choice after the third time my doc raised the dosage. It did seem to make things worse after the honeymoon wore off, which was generally a couple of weeks, maybe 10 days.
I sure hope that the PCP is willing to give you an honest chance at something different. Hopefully, you'll get a chance at good rest even when your not working. My thoughts are with you and my fingers crossed.
Hang in there and keep us updated.
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Penguinrocks
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Hi Penguin,
Thank you, yes prayers are always answered.....greatfully Yes and healthy was the answer this time. Hugs to ya, I'm sure we'll chat soon.
Thank you, yes prayers are always answered.....greatfully Yes and healthy was the answer this time. Hugs to ya, I'm sure we'll chat soon.
i don't know where to post, so this is it
It's Jan
Both Ann and Becat know I'm coming down off of a high dose of Mirapex. I'm not going to go off of Mirapex entirely. The goal of my doc is for me to reach 1.5 mg. of mirapex. I'm at 2.0 and my legs are driving me crazy. My former neuro had me on 5 mg. BUT I was only taking 3 mg. This is my second week of reducing the dosage and I am going through withdrawal. I don't think I can stand it. I've been through withdrawal on Effexor. It was bad. This is worse. Well, maybe not. I hven't broken out in hives yet. I've got to do this because I can't take that much Mirapex and I don't want to. I feel like I could jump out of my skin, my legs are going crazy, I've spent all day today and yesterday in tears. And, this is the third night I haven't slept. I have to do this for my health. I haven't called my neoro because what's he going to do? So, I guess I'm just letting off some steam. I hope I don't get a bad response from someone, please. I'm trying to do what is right here. I just wanted to talk to someone right now.
Thanks.
Jan
Both Ann and Becat know I'm coming down off of a high dose of Mirapex. I'm not going to go off of Mirapex entirely. The goal of my doc is for me to reach 1.5 mg. of mirapex. I'm at 2.0 and my legs are driving me crazy. My former neuro had me on 5 mg. BUT I was only taking 3 mg. This is my second week of reducing the dosage and I am going through withdrawal. I don't think I can stand it. I've been through withdrawal on Effexor. It was bad. This is worse. Well, maybe not. I hven't broken out in hives yet. I've got to do this because I can't take that much Mirapex and I don't want to. I feel like I could jump out of my skin, my legs are going crazy, I've spent all day today and yesterday in tears. And, this is the third night I haven't slept. I have to do this for my health. I haven't called my neoro because what's he going to do? So, I guess I'm just letting off some steam. I hope I don't get a bad response from someone, please. I'm trying to do what is right here. I just wanted to talk to someone right now.
Thanks.
Jan
No one is alone who had friends.
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cornelia
Jan, I think you are going through the same things as Ann. I also experienced severe RLS after withdrawing from DA's. I think it is better to withdraw abruptly (with docter's consent) than slowly. I did it abruptly and I had a hell of 4 days of very severe RLS, but after that it was OK. So...there is light at the end of the tunnel.
I think 1.5 mg is still a lot of Mirapex. Isn't it better to add a second class of meds and lower the Mirapex even more? Dr Buchfuhrer says that most patients need 4 to 6 of the 0.125mg pills. My neuro agrees. Better to add something else to be able to stay on low doses of both.
So try to stick it out, Jan, I know it is HORRIBLE.
Corrie
I think 1.5 mg is still a lot of Mirapex. Isn't it better to add a second class of meds and lower the Mirapex even more? Dr Buchfuhrer says that most patients need 4 to 6 of the 0.125mg pills. My neuro agrees. Better to add something else to be able to stay on low doses of both.
So try to stick it out, Jan, I know it is HORRIBLE.
Corrie
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ViewsAskew
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Jan, I'm up at 4:00 AM after 2 1/2 hours of sleep with my legs doing an involuntary can-can 
. A week ago I couldn't take it and upped my Mirapex. For a couple of days, I still was sort of crazy, then it evened out. I thought I'd give it a try again tonight, so I lowered it to the lowest dose I've ever taken. Right now it's like my right leg is being controlled by a puppet master who has no agenda except to watch the leg jerk this way and that.
OK, I didn't mean for that to go on for so long. At any rate, I see my doctor tomorrow and will take Dr B's letter along with me. This is what he wrote me:
"There are some patients who get augmentation with the dopamine agonists (Mirapex and Requip) may also get a severe withdrawal response such as you are experiencing. This response was very common with Sinemet but was easy to take care of as you could replace it with one of the dopamine agonists and avoid most of the withdrawal symptoms.
As you clearly should not be taking any dopaminergic drugs we need another plan for you. I would suggest changing Ultram to methadone, 5-10 mg every 8 hours as needed until you are back to normal. At that time you can return to Ultram if possible. Some patients even alternate methadone and Ultram (3-4 days of each drug per week).
You might also consider adding another drug such as Neurontin. It may help both Ultram or methadone so that you can use lower doses of those painkilling drugs. The Neurontin could be started while getting off of Mirapex or after to help get off of methadone (if you feel you want to do that) or lower the dose of your painkillers as noted above. "
I started the Neurontin when I got his reply. I already had a script for it, but it didn't work before. Then I realized I tried to use it the first time I tried to quit Mirapex and used it by itself to replace it. It didn't do anything to control the RLS. This time, with the Ultram, it's helping. Not making it go away, but helping. When I awoke at 3:50, I took 150 mg of Neurontin and another Ultram. As I type, the jerks are just starting to subside. It should be worth another 3 hours of sleep, I hope, but I'll take what I can get.
OK, I'm rambling and rambling while on a combination of Neurontin, Ultram, clonazepam and Mirapex. It'll be a miracle if anyone can make sense of this!
So, my last point, Jan. It sucks. And Corrie may be right (OK, two points). Get off of it completely using a strong med, then start it again in two weeks at .125 increments. Start with one and see if it works. Then add another. If you need something else, add an Ultram.
Ann
. A week ago I couldn't take it and upped my Mirapex. For a couple of days, I still was sort of crazy, then it evened out. I thought I'd give it a try again tonight, so I lowered it to the lowest dose I've ever taken. Right now it's like my right leg is being controlled by a puppet master who has no agenda except to watch the leg jerk this way and that.
OK, I didn't mean for that to go on for so long. At any rate, I see my doctor tomorrow and will take Dr B's letter along with me. This is what he wrote me:
"There are some patients who get augmentation with the dopamine agonists (Mirapex and Requip) may also get a severe withdrawal response such as you are experiencing. This response was very common with Sinemet but was easy to take care of as you could replace it with one of the dopamine agonists and avoid most of the withdrawal symptoms.
As you clearly should not be taking any dopaminergic drugs we need another plan for you. I would suggest changing Ultram to methadone, 5-10 mg every 8 hours as needed until you are back to normal. At that time you can return to Ultram if possible. Some patients even alternate methadone and Ultram (3-4 days of each drug per week).
You might also consider adding another drug such as Neurontin. It may help both Ultram or methadone so that you can use lower doses of those painkilling drugs. The Neurontin could be started while getting off of Mirapex or after to help get off of methadone (if you feel you want to do that) or lower the dose of your painkillers as noted above. "
I started the Neurontin when I got his reply. I already had a script for it, but it didn't work before. Then I realized I tried to use it the first time I tried to quit Mirapex and used it by itself to replace it. It didn't do anything to control the RLS. This time, with the Ultram, it's helping. Not making it go away, but helping. When I awoke at 3:50, I took 150 mg of Neurontin and another Ultram. As I type, the jerks are just starting to subside. It should be worth another 3 hours of sleep, I hope, but I'll take what I can get.
OK, I'm rambling and rambling while on a combination of Neurontin, Ultram, clonazepam and Mirapex. It'll be a miracle if anyone can make sense of this!
So, my last point, Jan. It sucks. And Corrie may be right (OK, two points). Get off of it completely using a strong med, then start it again in two weeks at .125 increments. Start with one and see if it works. Then add another. If you need something else, add an Ultram.
Ann
Ok, I'm trying to get this through my thick skull!
It's Jan
I'm already on 1 mg. Clonzepam. I wish I had NEVER head of Mirapex. Believe me, I hate it! But, when I started on it, Requip didn't exist. So, since I'm already on Clonzepam. So, you're suggesting (or the letter
suggets) that I call my doctor and ask him form HELP. I'm even starting to get RLS in my arms. It's 5:06 here and that means that I'll have it all day long. I'll be certifiable to tomorrow night. You know, since I've developed whatever it is that is wrong with me, I've become extremely sensitive to drugs and to everything else (I break out in hives at the drop of a hat from new medications OR from oxygen (hehe)).
Thanks for getting back to me, both of you! I just knew you would!
I'll call my doctor as soon as I can.
Jan
I'm already on 1 mg. Clonzepam. I wish I had NEVER head of Mirapex. Believe me, I hate it! But, when I started on it, Requip didn't exist. So, since I'm already on Clonzepam. So, you're suggesting (or the letter
suggets) that I call my doctor and ask him form HELP. I'm even starting to get RLS in my arms. It's 5:06 here and that means that I'll have it all day long. I'll be certifiable to tomorrow night. You know, since I've developed whatever it is that is wrong with me, I've become extremely sensitive to drugs and to everything else (I break out in hives at the drop of a hat from new medications OR from oxygen (hehe)).
Thanks for getting back to me, both of you! I just knew you would!
I'll call my doctor as soon as I can.
Jan
No one is alone who had friends.
Ann, I don't know how you read this last post
It's Jan
I must have been half asleep when I wrote this last post. Sorry.
Obviously, I can't just go off my medication cold turkey. I'm following my current neurologist's directions. But, thank you so much, Ann, for your input. I really appreciate all of your help. I will continue to follow my new neuro's recommendations. If I'm misunderstanding what you wrote, I apologize. Again, thank you, Ann, and you, Corrie, for your offer of help and I asked for it.
Jan
I must have been half asleep when I wrote this last post. Sorry.
Obviously, I can't just go off my medication cold turkey. I'm following my current neurologist's directions. But, thank you so much, Ann, for your input. I really appreciate all of your help. I will continue to follow my new neuro's recommendations. If I'm misunderstanding what you wrote, I apologize. Again, thank you, Ann, and you, Corrie, for your offer of help and I asked for it.
Jan
No one is alone who had friends.
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ViewsAskew
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Jan, I got a script today for the methadone. I'll keep you all updated on how it goes.
I wouldn't do cold turkey without a strong backup med. Methadone is a strong one. Dr Buchfurer thought it would take away 95% of the discomfort of withdrawal and I should be able to stop it in 1 to 2 weeks, then continue forward with Ultram.
Listening to the doctor is a good thing. You've got yourself someone who is listening to you. As long as what he is doing is working, I wouldn't change a thing if I were you.
Ann
I wouldn't do cold turkey without a strong backup med. Methadone is a strong one. Dr Buchfurer thought it would take away 95% of the discomfort of withdrawal and I should be able to stop it in 1 to 2 weeks, then continue forward with Ultram.
Listening to the doctor is a good thing. You've got yourself someone who is listening to you. As long as what he is doing is working, I wouldn't change a thing if I were you.
Ann
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OK, took my first dose of methodone about an hour ago. I am not going to take the Mirapex tonight. So far, so good. I have no restlessless and am feeling sleepy. I did take .5 mg clonazepam a few hours ago because I was at an event where I was supposed to stay seated - NOT! I am going to try to avoid any more Neurontin or clonazepam tonight, though.
I took 1/4 dose of the methadone for my first dose to see how it would affect me, so I will take a 1/4 dose more a 1/2 hour before bed and see what happens. Here's hoping that I am not awake to write any incomprehensible messages at 4 AM like last night
. And if I wake up here's hoping the remaining amount of methadone will resolve any problems!
Ann
I took 1/4 dose of the methadone for my first dose to see how it would affect me, so I will take a 1/4 dose more a 1/2 hour before bed and see what happens. Here's hoping that I am not awake to write any incomprehensible messages at 4 AM like last night
. And if I wake up here's hoping the remaining amount of methadone will resolve any problems!
Ann