Long Time

[Barrylegs]

Hi, I have been on pramipexole for over 15 years & also Tramadol for 10 years, no real side effects, as well as prednisolone, if I come off of them god knows what I would be like, I know I have to do it slowly, but I am okay at the moment, I can handle the RLS, be safe all of you.

[Hidden]

Hi Barrylegs, I see you were suffering augmentation possibly three years ago and have more recently posted about 3 months ago and are still taking pramipexole and still suffering augmentation.

I understand that you are trying to wean off pramipexole and are worried if you can manage without it.

You are also still taking tramadol and you re taking prednisilone.

I'm not sure what you're taking the prednisilone for, perhaps a separate health condition.

I hope that the withdrawal from pramipexole is going well and that withdrawal effects aren't too severe. You are quite right to withdraw from this slowly. The tramadol may help with wirhdrawals, but as you've been taking it a long time, possibly not.

I also hope you considered the suggestion of starting on gabapentin or pregabalin before reducing the pramipexole. This may help with your symptoms at the moment, but when you have finally withdrawn from the pramipexole will hopefully control your RLS symptoms, especially insomnia.

If you aren;t taking naything to replace the pramipexole then this could be problematical. In the short term at least, your RLS will be largely uncontrolled and although you may find some improvement as augmentation declines you are unlikely to be symptom free.

I wish you luck and keep us posted on your progress.

[Barrylegs in reply to Hidden]

Hi, Thanks for the advice, I have just written to Joolsg, the with draw from pramipexole is scare as is with the steroids, I go nuts if I do not take them, can not keep still, arms and legs on the move, I do not sleep much now may be three hours a night and a little during the day if I am lucky, if I use my brain to concentrate on something the RLS is not as bad, but can not just lay still or sit, any way I do go on, thank you be safe,

[Hidden in reply to Barrylegs]

I'm so sorry, you are between a rock and a hard place. Your severe symptoms at the moment are a result of augmentation and the only way forward is to reduce the pramipexole. Things will not imrpove if you don't reduce the pramipexole.

On the other hand if you reduce it too fast then withdrawal effects will be worse.

It might seem as if you'll be damned if you don';t reduce the pramipexole and you'll be damned if you do..

However. just to stress, it seesm if you don't reduce then this will go on indefinitely. Things will only improve if you persist in reducing despite the withdrawal effects.

Since you've been taking tramadol so long it may be of little help in getting you through this period. I still suggest you try taking gabapentin or pregabalin, it may help.

I think both Jools and myself are still mystified why you're taking a steroid. I'm not 100% certain but this may be a factor in your current situation, long temr steroid use causes raised blood sugar

[Joolsg]

Hi Barrylegs. The thought of withdrawal is sometimes overwhelming but until you start to reduce the pramipexole, the augmentation will continue. Manerva has given you great advice- reduce slowly (min 3 months).

Why are you taking long term steroids? I have been prescribed them once before for MS and they kept me awake for days. The dose was very high though.

[Barrylegs in reply to Joolsg]

Hi, I have been reducing very slowly, as the withdrawal is terrible, and made me ill, as for the Tramadol it helps me sleep and the RLS, same with the pramipexole my legs and body go nuts can not lay down to rest ie sleep, do not sleep much only when I fall asleep in the chair, because I am so tired, I have to keep moving or the RLS gets really bad, all the best, be safe.

[timosky43]

I'm gradually weaning myself off of pramipexole using LDN (Low Dose Naltrexone).

I initially stopped it too quickly and ended up not sleeping much for 2-3 days, then resumed using it, but was able to reduce the dosage from .5 mg to .375 mg. I was on the LDN for 5 days and was able to reduce again from .375 mg to .25 mg. I thought I would be able to reduce the pramipexole again as I gradually increased the LDN dosage, but that didn't work, so I reduced, then stopped the LDN. I'm back on it again, figuring I had success at the lower dose, so I'm trying that again. Plus, my body has now had more time to adjust to the lower dose of Pramipexole. The caveat is that our bodies are, among other things, sensitive chemical factories, so what works one day (or week or month or year, etc.) might not work the next. If I make it all the way off the Pramipexole, I'll post about it. Hope this helps.

[Joolsg in reply to timosky43]

Hope you can manage to get off the pramipexole.

I remember reducing Ropinirole and my RLS stabilised when I had reduced to 1mg. However the daytime RLS soon became unbearable again and I knew the only way to stop it was to withdraw completely from Ropinirole.

Take your time. Dr Winkleman (RLS expert in Boston) recommends a minimum of 3 months ( up to 12 months).

Looking back, I reduced too quickly and so withdrawal was not something I wish to remember.

You’ve done really well getting this far but go slowly.

I have heard of someone using micro doses of LDN to get off low dose OxyContin & pregabalin. She then increased the LDN to 5mg a day and that gives her total relief from RLS.

It’s something I am considering some time in the future ( when I’m brave enough to reduce my OxyContin & pregabalin).

Let us know how you get on and if plan to use LDN to control the RLS.

Good luck.