I was on Mirapex until a year ago when I realized I was augmenting badly because I kept upping the dose and got less and less relief. I went through withdrawal, cold turkey, for 3 to 4 weeks before I started Horizant. Pretty quickly I realized that I had to take two Horizant to get good results, and it worked beautifully for about 8 months or so. Suddenly, it totally quit working. Completely! I wrote to Dr. Buchfuhrer and asked for advice...he told me to go down to one Horizant before I try the patch. I was in such misery that, since I had a bottle of Mirapex, I started taking .,25 mg mirapex an hour before sleep (I tried .125 for two days, but no relief) and also was taking the Horizant at about 5:30 pm. Thankfully, it has been working, but Dr. B. did advise me that I will have a hard time going off the Mirapex again. I am desperate for sleep, so I have decided to deal with that problem when and if it happens.
My first question is this: When I was on Mirapex for so long (approximately 7 years), I began having joint pain--badly. Since RA runs in my family, I kind of put up with it. After going off Mirapex the joints seemed to be less bothersome, but it was so gradual I guess I didn't even notice. Now that I've been taking .25 mg at night, the joint pain has returned with a vengeance. I didn't realize the connection until this evening when a light bulb went off in my head! So, I need to get off of the Mirapex this time for good.
I have an appointment Tuesday to see my GP and am going to ask him for the patch then. From what I've read, since I'm only taking one Horizant a day, I can stop that with no adverse effect. When I start with the patch, does it work the first night, or will I need to prepare myself for no sleep for a while? Do you think it is necessary that I ask for a sleep aid or some other medicine that will help me get some sleep? I don't know what to expect, but I know now that I can no longer take this Mirapex. We are leaving for 10 days vacation two days after my appointment, so I am really hoping for an easy transition over to the patch.
If you have any other suggestions, I would love to hear them. I am so glad I found this site, even though I live in the states. I really appreciate reading the letters to try to pick up hints of things I've never done. Thank you all!
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lovepugs
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Hi I was on mirapexin for 5 years then it stopped working for me so my doctor put me on the neupro patch and it works great as long as I use it on my upper arms because if I put it on anywhere else it does not work and I also have to use a plaster to hold it on as it does not stick well! I had joint problems when using mirapexin and I still have joint problems !
Hope you get sorted soon an get some rest
Hi lovepugs, i was on the Neupro patch for a couple of months and it worked for me from the first day. Unfortunately I had to stop the patch because my skin didn't accept it anymore. I wish you all the best and hope that the Neupro patch will work for you.
Hi lovepugs, The patch should work straight away, it did for me, Horizant isnt available in the UK, but if thats what you have read about stopping that straight off, then i guess it shouldnt be a problem.
Getting off any dopamine agonist med is hell apparently, i read that all the time. I havent had to try it so far.
But switching from the mirapex to the patch should be fine, being they are both dopamine meds. Just be aware that the patch can also cause augmentation just like mirapex and requip. I also used to stick my patch on my upper arms, as it seem to work better for me in that area too.
We have a few people on here from the USA, its a site for all who suffer from RLS, regardless what part of the world you live in.
I cant say i have ever had joint pain from mirapex (pramipexole) i do get pain but its associated with RLS, my pain is in my calves, like a deep ache, which can be very painful sometimes.
Elisse I believe that Horizant is Gabapentin which I have just been prescribed as a result of my showing my GP the write up referred to on this site of Dr Richard P Allen's 'What RLS & Insomnia may share in common'. It's not working yet but I live in hope. I'm trying everything on the way to hopefully being allowed access to these apparently very expensive patches. I've suffered for years and am only just being taken seriously, especially with respect to the pain that can accompany the discomfort. Having to make sure I sit at the end of a row in case I have to leave the concert hall or cinema before the performance ends because of RLS has become a way of life and can be embarrassing. One good thing that has occurred is discovering this site and realising that I am not alone.
Horizant is not quite the same as Gabapentin. Horizant is absorbed through the bowel, it then turns into gabapentin. I will have to find some info to put up on here for others to read.
It seems some doctors want you to try everything else to save money, before they agree with letting you have the patch.
Elisse I believe that Horizant is Gabapentin which I have just been prescribed as a result of my showing my GP the write up referred to on this site of Dr Richard P Allen's 'What RLS & Insomnia may share in common'. It's not working yet but I live in hope. I'm trying everything on the way to hopefully being allowed access to these apparently very expensive patches. I've suffered for years and am only just being taken seriously, especially with respect to the pain that can accompany the discomfort. Having to make sure I sit at the end of a row in case I have to leave the concert hall or cinema before the performance ends because of RLS has become a way of life and can be embarrassing. One good thing that has occurred is discovering this site and realising that I am not alone.
INFORMATION REGARDING HORIZANT IT MIGHT BE USEFUL FOR ANYONE....HORIZANT IS NOT AVAILABLE IN THE UK...
Gabapentin enacarbil (Horizant™) extended release tablets received FDA approval in April 2011 for the treatment of moderate-to-severe primary Restless Legs Syndrome in adults.1 Gabapentin immediate release (Neurontin) was first approved by the FDA in 1994 for the adjunct treatment of partial seizures and is also FDA approved for the treatment of post-herpetic neuralgia. Gabapentin immediate release has also been used for many off-label indications, including treatment of migraine headache, fibromyalgia and neuropathic pain, and anxiety.
What is the mechanism of action of gabapentin enacarbil?
Gabapentin enacarbil is a prodrug of gabapentin that is absorbed throughout the entire GI tract. The ability of gabapentin enacarbil to be absorbed in the large intestine differs from traditional gabapentin and contributes to its long-acting nature. Gabapentin enacarbil undergoes extensive 1st-pass hydrolysis by non-specific carboxylesterases to form gabapentin, carbon dioxide, acetaldehyde, and isobutyric acid.1 The precise mechanism by which gabapentin is efficacious in Restless Legs Syndrome is unknown. Gabapentin is structurally related to the neurotransmitter gamma-aminobutyric acid (GABA) but has no effect on GABA binding, uptake, or degradation. In vitro studies have shown that gabapentin binds with high affinity to the a2d subunit of voltage-activated calcium channels; however, the relationship of this binding to the therapeutic effects of gabapentin enacarbil in RLS is unknown.1
How is gabapentin enacarbil dosed and how should it be administered?
Gabapentin enacarbil is supplied in 600 mg extended release tablets. The recommended dose is 600 mg daily at 5pm with food. Gabapentin enacarbil tablets should be swallowed whole and should not be cut, crushed, or chewed. A dose of 1,200 mg once daily provided no additional benefit compared with the 600 mg dose, and caused an increase in adverse reactions.1 If the dose of gabapentin enacarbil is not taken at the recommended time, the next dose should be taken the following day as prescribed. Gabapentin enacarbil can be abruptly discontinued in patients taking the 600 mg once daily dose. If this dose is exceeded, the dose should be tapered to 600 mg daily for one week prior to discontinuation. The package labeling states that gabapentin enacarbil is not interchangeable with any other forms of gabapentin due to differing pharmacokinetic profiles.1
The only reason Neupro didn't work for me on day 1 was that I didn't let it! It takes several hours before providing relief and I otherwise medicated too quickly, thinking it was not working. On the second day I gave it more time and have been absolutely hooked on it ever since. If I put it on around 3:30 I am assured that I can have a relaxing evening and a good night's sleep. I'm in the US too, and when they pulled it from the market I cried for days. Finally whined my way into a study with UCB so I have been very fortunate to have had access to it all along. I do not find that I have had to increase the dosage. Agreed that it's pretty rough on the skin - but to me worth the itching/occasional bleeding. And I cover it with duck tape to ensure it stays put. All this might sound somewhat negative but believe me when I say that Neupro changed/saved my life. After literally decades without a decent night's sleep, it gives me relief with at least 99% consistency and allows me to both fall asleep and STAY asleep. It's a miracle! Now, if the Wings win tonite, that'll be an equally great miracle!!!
The only thing that has ever really worked for me was the patch. I was on it for about 7 months and it was bliss. However I developed an allergy and had dreadful skin rashes and eruptions and had to come off it. I havn't had a good nights sleep since. I hope you fare better. Good Luck.
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