Tapering off Pramipexole

[Purplecpa11]

I am currently trying to taper off Pramipexole as I have been taking them for about 10 years however I reduced from three .125mg pills down to two pills about 2 years ago without any negative side effects once I read about augmentation. I went to my doctor 2 weeks ago to ask about weaning from Pramipexole and she prescribed Gabapentin and said to start taking one .125 pill along with 300mg Gabapentin. I tried that one night and realized it was way too large of a jump. I instead cut a .125 pill in half and I've been taking .1875mg a night. It's been about 2 weeks and just the past few nights I have been waking up with restless arms in the early morning and experiencing mild RLS throughout the day. I have not been taking the Gabapentin as I didn't notice a change when including it and I was going to add this later as I weaned the Pramipexole further. I also had my labs done at the same appointment and my ferritin came back as 47 however my iron was 150 (range 37-145) and iron saturation was 51% (range 20-50%) so my doctor wants to have an appointment to discuss my high iron, however I do not eat iron rich foods, or take supplements and I drink a ton of coffee so I'm confused on how my iron could be high. Any insight??

[Purplecpa11]

Adding some background, I have had RLS as long as I can remember (around 10 years old) however it wasn't till I started Pramipexole that the symptoms became daily. Also RLS runs in the family on both my parents sides. I am a 48 year old female. No other health issues no other medications taken.

[SueJohnson]

I've no idea why your iron is so high although the most likely cause of it is genetic requiring the gene from both parents. They may not have the problem but just be carriers.

[Purplecpa11 in reply to SueJohnson]

Any idea why ferritin would be low if iron is high? How do I increase ferritin to over 100 if doctor says iron is too high? Could it be the iron in my blood is not being absorbed into my organs with such as low iron in brain which would have an effect on RLS? I wonder if taking iron supplements would help ferritin level…

[Madlegs1 in reply to Purplecpa11]

Your case is really weird for a number of reasons.

As regards the iron issues, I would email the Iron Disorders Institute with your query. They are very good on all iron problems.

[SueJohnson in reply to Purplecpa11]

I've no idea why your ferritin is low when your iron is too high. I would ask that question of the Iron Disorders Institute as Madkegs1 suggested. You should not take iron tablets since your iron is too high. Unfortunately you won't be able to raise your ferritin as a result.

[jilk]

coffee consumption could affect thiamine . google (dr chandler marrs mitochondrias gateway to energy,) as thiamine governs just about everything

[DicCarlson]

Perhaps some clarification here...

bloodtestsresults.com/iron-...

Also here - the Iron Disorders Institute...

irondisorders.org/

[tagaxel]

You are very lucky to get off that level of pramipexole so lightly. Most of us go into severe withdrawal. When I went into withdrawal I took some bad advice which was to “wait it out”. After a couple of weeks in anguish I tried to reinstate to where I was but I was still in terrible pain. Some people have compared it to trying to get off heroin or cocaine. I had to contact an “addiction psychiatrist”. Ultimately I ended up on twice the amount of pramipexole from where I started. That was just the beginning of the nightmare.

The bottom line is that I figured out a way to deal with it. I asked my physician to write a prescription to a compounding pharmacist who converted a 0.25 pramipexole tablet into a 15 mL compound from which I could withdraw on a nightly basis by 0.5 mL per night. This is a very tiny amount and the idea is to trick the brain into not missing it. I only missed part of the dose on one night a few months back and blew away six months! I started the odyssey at 0.5 mg of pramipexole but ended up going all the way up to 0.875 mg and now I’m finally down to 0.625 mg after over a year!

Neither pramipexole nor gabapentin are the drug used to treat RLS and the longer. The new drug is called Horizant. Usually gabapentin works but I would think that you would need somewhere between 600 and 1200 mg to control RLS.

I don’t think your iron levels are anywhere near they should be but I have forgotten what the proper levels are. I do know that they are supposed to be significantly higher than people who do not suffer from RLS.

[SueJohnson in reply to tagaxel]

Horizant is basically just a 24 hour version of gabapentin/ pregabalin. And yes gabapentin and pregabalin are very definitely used to treat RLS. And the usual effective dose of gabapentin per the Mayor Clinic Updated Algorithm on RLS is 1200 - 1800 mg.

[Biscuitface in reply to tagaxel]

Total iron for RLS should be 60ug/dlIron sats 16% or higher

Ferritin 100ng/dl or higher

TIBC 400 ug/dl or lower

[kygigi3]

pramipexole saved my life. I have rls all the way up to my shoulders. I used to put bruises on myself from punching my arms and legs. Attempting to make the pain override the rls. I imagined myself sawing my legs off! Mine was so bad that I ended up not being able to even work because I was up all night walking the floor and trying various odd positions to make it stop. If anyone was ever watching me through the windows, I’m sure the odd positions I would get in to try and make it stop, I’m sure would scare anyone off! I turned into such a monster from the torture of rls that I’m pretty sure it was the rls and the torture I endured that cost me my 1st marriage. I’ve been on it for about 3 years and so far it has been such a miracle pill that if anyone tried to take it from me I would have to shoot them!