New Dr

[Woody4]

I’ve gotten the pramipexole down to .5 a day from the 1.5 my dinosaur neurologist had me taking. (he did finally have his nurse call me about the really bad augmenting I was going through. She told me he wanted me to go to 1 mg 3 times a day). So my question is, once I get off of the pramipexole what should I suggest to ‘my new Dr’ to take as its replacement??

[Hidden]

Just to clarify, you're saying that you'd cut down to 0.5mg day and your neurologist wants you to increase it to 3mg i.e. FOUR times the maximum dose? Dinosaur isn't the word I'd use!

The standard replacement for a dopamine agonist when augmentation has occurred is either pregabalin, (Lyrica), gabapentin, (Neurontin) or gabapentin enacarbil (Horizant).

[Woody4 in reply to Hidden]

And I have the voicemail to prove the 3 times a day the dinosaur prescribed

[LotteM]

Manerva is right. He usually - and correctly - also writes that it is of prime importance to have your blood tested for iron and to gets its values up to high the normal range. Especially ferritin when it is below 50-75-100ng/l. Aim for values above 100 which be achieved by oral iron (most of us prefer iron bisglycinate, which is gentle on the intestines) daily on an empty stomach or even once every other day the reduce the chance of obstipation. That way iron values do not increase any slower than when you take it 3x daily, but you'll avoid most obstipation issues. When ferritin is below 100 and transferrin saturation below 20% (I think) you'll classify for intravenous iron. See this link: sciencedirect.com/science/a....

[involuntarydancer]

Wow! with doctors like that who needs enemies!Well done for reducing your dose so much. You must be going through tough times at the moment. I hope you are getting some sleep.

Manerva and Lotte have given great advice. If you are in the US you could also try kratom which can be helpful when withdrawing from pramipexole and you don't need a prescription to get it.

It may be that your best option for medical care is actually to train up your GP. Inform yourself of the various options (already outlined by Manerva and Lotte), decide how you wish to proceed and then arm yourself with all the studies required to support your decision. Bring scientific articles with you every time you visit the GP and refer to them. It can be useful to order the medical textbook on RLS by Drs Buchfuhrer, Lee, Henning and Allen and bring that too although it is a little out of date now.

At the risk of sounding cynical, I think a good start is to download the study that shows a strong link between RLS and suicide. Doctors don't like to lose patients to suicide and can be more ready to engage if they think there's a risk of it.

[Woody4 in reply to involuntarydancer]

For me, a Veteran, if I should ever mention the word suicide in anyway, first thing that will happen is my house would be raided and any firearm I own would be confiscated. Being a hunter and a firm believer in the 2nd amendment, I couldn’t/wouldn’t do that. But Thanks for trying!!

[Barb574]

After I augmented on pramioexole, they had to put me on an opiod.... now taking Methadone

[funnyfennel in reply to Barb574]

Which country do you live in Barb, because I didn't think you could get methadone in England. I am at the moment on mirapex and 5mgs of Shortec.

[Hidden in reply to funnyfennel]

If you're using shortec and it's working, you don't need methadone. Targinact is the only opioid licensed for RLS in the UK. It too has oxycodone in it.

Another option, if necessary, is to ask to switch to temgesic.

The other thing is, if you're having RLS problems, it may be due to the pramipexole (mirapex).

Can you say what dose you're taking and for how long?

[Woody4 in reply to Hidden]

I augmented on roprinole around 3 years ago. The dinosaur put me on .5 mg pramipexole to start. Year later started augmenting on the .5 pramipexole, dinosaur doubled to 1 mg. 6 months ago started again having symptoms again, went to 1.5 mg. That didn’t last long before earlier daytime symptoms started. On my own I went back to 1 mg. Then is when I got a voicemail from the dinosaurs nurse telling me to go to 1 mg 3 times a day. After reading some of Dr Buchfuhrer’s articles he sent me on augmenting, I dug out some hydrocodone I still had from dental surgery years before. With the help of the hydrocodone, I have gone back to .5 mg and have stopped the augmenting. Not sure how fast or slow you are supposed to reduce the pramipexole but as long as I have hydrocodone to help I want off completely. Trouble is I am running out of the hydrocodone and Dr refuses to give me more.

[Hidden in reply to Woody4]

Damn - it would help to get some oxycodone or at least tramadol or codeine to help get off the pramipexole.

When I withdrew from pramipexole it did it by reducing in steps of 44micrograms every 4 weeks. 44micrograms is half a 0.125mg tab. (trust me!)

I didn't have any opioids. I didn't have any significant withdrawal effects, but it took me nearly ten months.

You can try doing it faster e.g. by reducing every two weeks. Or by trying bigger reductions say 0.125mg but you may find as the dose gets lower, the withdrawal effects get worse.

I guess it depends on how much hyderocodone you have or what opioid you can get.

[Woody4 in reply to Hidden]

I have tramadol but it doesn’t help me at all. Maybe because I’ve been taking it for over 10 years. I’m planning on staying on .5 pramipexole for at least 2-3 weeks before trying to go to .25. Wish me luck!!

[Hidden in reply to Woody4]

I suggest you cut it by no more than 0.125mg, rather than 0.25mg, 0.25 is pushing it a bit. You may even find that 0.125 is too drastic. However, see how you go on.