Pramipexole - help please

[Pollyerrington]

Hi, I've just been put on 88 micrograms pramipexole - one every night.

I know the warnings (thanks)

I've only been on it 2 nights, and so far no help at all with my RLS.

I've always suffered but it only used to be once every couple of months. Then I shattered my leg and ankle in a fall, had surgery and metal in my leg and now I get in terrible every single night.

The only thing that helps is tramadol.

My question is... how long should it take until the pramipexole starts to work? (I'm having to take it with tramadol at the moment, and I'm not sure when to stop the tramadol...)

And any advice for me regarding the meds? I'm already aware of the gambling/compulsive issues it can cause...

Thanks in advance!

[involuntarydancer]

When I took pramipexole it worked straight away - it was like a miracle. My rls may not have been quite so severe as you describe however. What dose are you on? Maybe it is just not enough (obviously with pramipexole you want the lowest dose possible but no point taking it if it is no use).

[Pippins2]

Hi is your strength 0.088mg? If so you can move up to 2 of those pills. If that doesn't help it is not the right med for you.

It should work from the first night it doesn't need to build up like some meds do

First night I took it I thought I had died and gone to heaven

Pipps x

[Pollyerrington in reply to Pippins2]

Hi, yes I've just checked and it's 0.088mg. Will try 2 and see what happens.

Fingers crossed.

Thanks!!!

[Madlegs1 in reply to Pollyerrington]

When I was using Prami I had to go up to 2 pills.

That should work.

Tramadol does have unpleasant side effects for some people- itching and insomnia- so don't get confused!😆

You could go up to 3 pills- but that would be tops-(.25) for rls.

The compulsive addiction effects are generally experienced with much higher Parkinson doses.

😎

[Pollyerrington in reply to Madlegs1]

The NICE dosage guidelines for rls said max is 0.5 mg...

I've been on tramadol for 6 months. It's the only thing that helps my pain and rls. Hoping to come off it now I have prami.

Thanks for advice

[Pippins2 in reply to Pollyerrington]

Polly yes i understand that but they are not RLS experts .Most Neurologists dont even know about augmentation.The international experts say differently x

[Pollyerrington in reply to Pippins2]

Tried a double dose last night. It worked better but still not 100%. I looked up doses online and you can titrate every week up to .5mg

I think I need a bigger dose - I'm 6ft and a size 14 so it would make sense that I'd need more!

Thanks for your help!x

[Madlegs1 in reply to Pollyerrington]

Grand- but you have been warned. Just search augmentation on this site- and check out the previous posting on Prami.

I bet no one in NICE ever got augmentation.

Good luck.

[Madlegs1 in reply to Madlegs1]

Polly- me again. You say that the Tramadol is giving you rls relief. That medication is what many people would love to be on for rls- especially if they can cope with any side effects ( I got terrible itching and insomnia and changed to oxycontin - which had same results , but I stuck with it and now a year later , I have no issues at all.)

So what I'm saying is- consider seriously staying with Tramadol rather than changing to something that will have to painfully be discarded in a matter of time.

Big decision.

Good luck.

[Pollyerrington in reply to Madlegs1]

Thanks for the heads up. I already suffer with rls in my arms. and get it throughout the day - so def do want it to get any worse!

I was under the impression that it would be worse to be on tramadol long term than it to be on prami long term...

I have nearly zero side effects on tramadol (maybe a little itching sometimes)

[Madlegs1 in reply to Pollyerrington]

It's a judgement call.

Everything has downsides- but from what I'm understanding in your case is that if you can continue with the Tramadol ( Dr compliant) then that seems to be the best road.

It should be the extended form and at as low a dose as is effective.

There is an extremely low possibility of augmentation (1 to 2%) with Tram.

Hopefully , someone with long term experience with Tramadol can come on to give you more information.

This would be very much in line with Dr Buchfurers' advice on "rlshelp.org"

[Pippins2 in reply to Pollyerrington]

The maximum daily recommended dose is now 0.088 x 2.This is what the top experts are saying as the higher the dose the higher the risk of augmentation x

[involuntarydancer]

Or could you continue tramadol at a low dose to supplement the prami? That way you could keep both at a lower dose than if you were taking only one set of meds. It gives you some wriggle room if one or the other becomes less effective - rather than starting right at the upper limit of the prami.

If you do decide to take 3 x .088 I would caution against increasing any more as time goes by. The latest thinking amongst rls experts is that .25 should be the upper limit - you will find this somewhere on the Johns Hopkins website, rls section. Also, I think on Dr Buchfuhrers site rlshelp.org. Best of luck. I really enjoyed the simplicity and good coverage of the early pramipexole years.

[Phogan]

Sifrol (Australian version) worked immediately for me. I have been taking it for 7 years and couldn't live without it

[cw7711]

I take 0.125mg of premapexole every hour for three hours with the last one hour prior to bedtime. This dosage has worked well for me for the past few years. Those side effects of various kinds of compulsivity aren't universal whereas the addictive nature of Tramadol is well know.