Off Pramipexole : First I want to thank... - Restless Legs Syn...

Restless Legs Syndrome

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Off Pramipexole

Grandmagoose profile image
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First I want to thank so many of you for your excellent advice and support to others on this site. I read posts almost daily but for some reason I don’t add much... I wrote several weeks ago and explained that I had seen Dr Buchfuhrer after Christmas and he took me cold turkey off Pramipexole and started Methadone. I am presently taking 7.5 mg an hour or so before bedtime. I really am feeling not much better than when I was augmenting on Pramipexole ( was taking .5 mg for nearly 4 years). I seldom sleep in my own bed moving to the couch shortly after going to bed. My shoulders and hips ache along with my achey, moving legs... my last report to Dr B was that I thought I was doing better and along with other questions for him regarding Gabapentin and my Ferritin Levels he said to continue what Im doing and we would discuss other questions when I see him again in July. I’m wondering who is on Methadone and your dosing.... and I am thinking of checking on cost out of pocket for iron infusion as my ferritin was 60 in January. This was down from 77 and 87 back in 2018 despite taking iron. My lowest was 23 in 2017 which unfortunately my MD at that time didn’t think an infusion would be covered. How stupid I was not to push it and pursue further wth my insurance. Thanks for any comments....

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Grandmagoose
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Joolsg profile image
Joolsg

I’m sorry to hear that the methadone is not really helping much. If you went cold turkey off pramipexole, you are probably still experiencing withdrawal symptoms, which can last months. Hopefully they will settle and the methadone will start to provide better coverage.

You should definitely consider the iron infusion as your levels are very low and 50% of rls sufferers will benefit from the infusion.

Grandmagoose profile image
Grandmagoose in reply to Joolsg

Thank you Joolsg. I wondered if I am still in withdrawal from the Pramipexole. I didn’t mention that I also have a condition called Hereditary Autoimmune Chronic Atrophic Gastritis which decreases my ability to absorb iron and B12, although my B12 came back in the normal range. I would think that alone would give me leverage for payment by my insurance for an iron infusion ... I would like to find out the cost to see if I could realistically self pay.. also anyone on methadone suffer from extreme nausea? I’m not suppose to have caffeine do gave up coffee 4 years ago but sure miss my tea.. was sneaking by with tea in am til methadone.

Graham3196 profile image
Graham3196 in reply to Grandmagoose

Hi I drink nothing but decaffinated tea and coffee and lactose free milk. If I don't get what I ask for then I will have problems.

I will send some information by Private Message.

It sounds like you have no choice but to give your body time to forget the pramipexole.

sjw_1978 profile image
sjw_1978

Can't comment on methadone but it will take a very long time for your body to adjust to the lower levels of dopamine as a result of complete withdrawal of pramipexole.

I recently stopped it too (lower doses than you) and now take gabapentin, but there is a period of weeks/months before many of these drugs become effective, whereas pramipexole is fairly instant. Consequently I am having issues at the moment but hope it is just a transition.

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