First time post…I can’t take this

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Nynightwalker
Posts: 3
Joined: Thu Mar 14, 2019 4:11 am

First time post…I can’t take this

Post by Nynightwalker »

Hi! I’ve been here, but never posted before. It’s difficult to sit and read on here when your legs are going bonkers. My arms usually do also, but the typing helps with that. I need to find a doc that can really help me. Doc says augmentation and I need to cut back on my Mirapex. I tried. I can’t do it.
I answered one of the other posts about knee replacements and RLS . Mine was TKR gone wrong 2 1/2 yrs ago. 5 surgeries.
I didn’t know where else to post and felt like putting something on here.

Polar Bear
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Joined: Tue Dec 26, 2006 4:34 pm
Location: United Kingdom

Re: First time post…I can’t take this

Post by Polar Bear »

Please look on the Augmentation Forum. You will find lots of information. Many of of have weaned off Mirapex/Pramepexole. As you've discovered it isn't easy but if your doctor is willing he can help you but he has to be willing to prescribe you an opioid at least for a few weeks while you reduce your Mirapex. Gabapentin is useful but may not be enough while you are augmenting.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

badnights
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Posts: 6259
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: First time post…I can’t take this

Post by badnights »

Ah gee I know how you're feeling, it;s horrible. Augmentation is the worst. Cutting back doesn't really help, you only see relief after you've been stopped completely for a while. But then, what relief! It's all so much better. At least your doctor knows what it is. Does he/she know how terrible it is, though? Have you described it to him?
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.

Carolina
Posts: 3
Joined: Sat Jun 25, 2022 4:29 am

Re: First time post…I can’t take this

Post by Carolina »

I also identify with what has been described as I am taking Pramipexole also. My dose is only 0.125 mg every other day. Is that enough to even have augmentation? Any time I try to see if I can extend my time between doses, RLS kicks back in and I have to get up and usually take twice my dose to calm it down. I do not like the side effects of Mirapex, irritability, extra anxiety and minor impulse control issues. Badnights mentions that once off this drug there is so much relief. So what does one take in the meantime? Is there any medication that is not an opioid and does not mess with dopamine? I tried Gabapentin first (actually I take it for a movement disorder and it works for that). Gabapentin does nothing for RLS for me.

Rustsmith
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Location: Colorado Springs, Colorado

Re: First time post…I can’t take this

Post by Rustsmith »

A dose of 0.125mg pramipexole that is only taken every other day shouldn't be enough to have caused augmentation, unless you are extremely susceptible to it. It is more likely that you are not taking enough to prevent your RLS from getting started. With RLS meds, it is important to stay in front of the symptoms rather than wait until it starts because then you have to wait for an hour or two for the med to calm your RLS.

It is much more worrisome that you are experiencing mild impulse control issues. Impulse control is a dangerous thing to toy with and anxiety is no fun to have to tolerate. With impulse control, the long term damage that it can cause can wreck marriages, destroy families and ruin finances. It is very important to bring this up to your doctor ASAP. If you read all the fine print that comes with your prescriptions, you will find that Impulse Control Disorder is one of the Serious side effects of pramipexole (and the other dopamine meds, too).

So, your breakthrough symptoms are not severe enough of a problem to warrant a change of your meds, but the Impulse Control issues almost demand an immediate change.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.

badnights
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Posts: 6259
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: First time post…I can’t take this

Post by badnights »

I agree with Steve.

And there is pretty much nothing besides opioids, since gabapentin doesn't help you much. But there is nothing much wrong with opioids in the grand scheme of things, except for the difficulty in getting doctors to prescribe them. They don't have such evil side effects as ICD.

I would also immediately get an iron lab (including ferritin) done, and if your ferritin is below 100 and your doctor confirms that you are not susceptible to iron overload, start taking oral iron one or two 325 mg pills of ferrous sulfate or fumarate with 250-500 mg vitamin C, preferably on an empty stomach. Once the iron builds up in your system - give it 3-4 weeks but it might happen sooner - you might notice a reduction in symptoms. Hopefully.
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.

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