Act pramipexole

[Kittykat1234]

Just went to see the doctor today and he prescribed .25 mg of pramipexole.. can anyone tell me if they’ve had trouble with this? Or if it seems to work? I’m crossing my fingers !!

[peterfromlondon]

good luck kittykat1234,_rls is tough too cope with ,ive,had it for years,magnesium helps ,but nothing is perfect ,my bed gets in a right mess by morning !

[Graham3196 in reply to peterfromlondon]

Hi Peter

I am just wondering if you have tried the FODMAP diet with extra exclusions of caffeine, alcohol and gluten.

Graham

[peterfromlondon in reply to Graham3196]

FODMAP IM TOLD IS worth trying

[involuntarydancer]

Kittykat, it is advisable to educate yourself thoroughly when starting pramipexole. It can be very effective initially but it has a terrible sting in the tail in that it can effectively start to feed the rls in a phenomenon known as augmentation. It can then be a torturous process to discontinue the pramipexole.

I take it from the dose you have been given that you are in the US (the concentrations are different in Europe and 0.25mg is the equivalent of 0.16mg here). That is quite a high dose to start on and actually is the maximum dose now recommended by most rls experts practicing in the US (eg Dr Earley, Dr Buchfuhrer and others). When I started pramipexole I started on a quarter of that dose.

If I had my time again I would make sure not to increase above that dose (ie one quarter of 0.25) and I would make sure to keep my serum ferritin levels as high as possible (preferably over 100) as there is a connection between low iron levels and augmentation.

For me, nothing works so well as pramipexole but it requires very careful management and in particular it is very important not to increase above 0.25mg but to use another medication if symptoms start to break through.

[Kittykat1234]

I’m actually in Canada, and my doctor told me it is actually the lowest dose.. I am now afraid to try it as you have mentioned the withdrawal symptoms being torturous. My doctor never mentioned anything like, just told me to see how it goes after a week. Thanks for info though!!

[involuntarydancer in reply to Kittykat1234]

Maybe the doses are different in Canada. I didn’t mean to frighten you and I certainly don’t mean to go behind your medical care. It’s just that there are many people on here who have had problems with pramipexole and sadly it is very common for medical professionals to prescribe it without acquainting themselves or their patients with the downsides of the medication.

The truth is that if you take a 0.25mg tablet tonight it will likely give you great relief. It’s just that it comes with a price. To me 0.25mg sounds a very high dose to start on but maybe you should see what other replies you get about this. You could also look back through some of the other posts about pramipexole. It is also known as siffrol and also mirapexin.

[Pam34 in reply to Kittykat1234]

Hi Kittykat

Really good advice from involuntary dancer. You could read the links below so you understand what to look out for and discuss with your doctor.

rls-uk.org/augmentation-reb...

Or

rlsfoundation.blogspot.com/...

Pam

[Kittykat1234]

I also have another question- should I take it a couple hours before bed or just before I go to sleep?

[involuntarydancer]

I always had to take it more than one hour before I went to bed. It worked very well generally but if I went to bed within an hour of taking it it just didn’t work at all - weird!

[Kittykat1234 in reply to involuntarydancer]

Thanks so much !

[FluteE]

I started out taking .125mg about 5years ago. I take it 2-3 hours before bedtime. This has always worked until recently. My dr increased my dose to .25mg. Not sure if I’m augmenting or not since there are higher doses but I am experiencing symptoms earlier in the day and in more areas than my legs. I am taking the good advice of the others and checking into the iron now.

[SLMCP]

Hi there - I am on Pramipexole 0.18 x 2 per day. Taking it for about 2 years. Yes my body is getting good used to it and some days I need another one but it has worked amazingly well for me! I take Codeine as well and magnesium citrate. I know augmentation (body getting used to a drug and ultimately making condition worse) but if you can get any relief from this horrendous disability then good luck x

[Diz17]

Augmentation is a common issue with this drug but the also the side effects need to be mentioned because I have an experience where the side effects of this drug ruined my life. I was never told about the compulsive behavior that can result from this drug as a side effect and I developed a terrible gambling problem that ended my marriage. My marriage was in a bad place already but this didn't help matters and caused me to be suicidal for quite some time. I think if you are already prone to any compulsive behavior this drug takes the "safety switch" in your brain and turns it "OFF." It caused me to do crazy things with money that I never would have done in my right mind. This is a serious problem for some people (but not all) so I don't think it is mentioned as much but if you are prone to ANY compulsive behaviors this can exacerbate those behaviors and can be very damaging to you and your loved ones. BEWARE and use with extreme care and caution. I think this drug will eventually be banned due to these side effects but time will tell as there are many lawsuits out there already. Good luck!

[involuntarydancer in reply to Diz17]

This is a VERY good point, Diz. I suffered from a compulsive shopping impulse when on pramipexole which was quite troublesome. It left me with some problematic liabilities. It ceased almost the day and hour I took the last tablet following augmentation.

I suspect this side effect may be more common than is recorded because it is very difficult to recognize in yourself. I thought it was a middle aged quirk emerging (I was never much of a shopper pre-pramipexole).

[marsha2306]

.25 - Way too much to start on.

[Kittykat1234 in reply to marsha2306]

Doctor said it was the lowest dose

[involuntarydancer in reply to Kittykat1234]

Could you cut the tablets in half?

[Kittykat1234 in reply to involuntarydancer]

Yes

[libraryannie in reply to involuntarydancer]

I was thinking the same thing. Pramipexole provides wonderful relief and if you have been experiencing RLS for a while, you desperately need relief! After being on Pramipexole for 20 years, I would also urge you to start at the lowest possible amount. As I am weaning myself off Pramipexole, (took the OLD maximum dose of 1.5 mg for years and it has taken months to get to .75mg which is still 3X the NEW maximum) I am even cutting the pill in quarters. If a QUARTER will give you relief, start there unless others disagree that it can be cut that small.

I agree that the most effective time for me to take Pramipexole is 2-3 hours before bedtime. If I took it at bedtime (10pm) it would be too late and I would experience a bout of RLS before I could enjoy sleep.

The side effect of compulsive behavior is very real and insidious. Shopping is out of control for me. Why buy one when two would be better? Try three different brands at once to see which is best! And I also experience having to have lots of projects and they have to be done RIGHT NOW and they all need materials, tools and supplies. No time to just sit down, relax and enjoy the view! I wonder if that is just me or if that will stop after I take my last pill?

[involuntarydancer in reply to libraryannie]

I experienced exactly what you describe. I would say that ALL the bad bits left me as soon as I took the last pill ... though some of it is part of who I am (we sound alike!) but the compulsive drive just melted away. And I hardly ever go shopping now - I don’t need to, having amassed enough stuff to last another life time thanks to pramipexole.

I think quartering the pill sounds a very good idea for the op.

Good luck with your continuing reduction.

[Kittykat1234 in reply to involuntarydancer]

I just started to take tramadol and it’s really helping relax everything! Anybody else try this medication? I’m also taking magnesium every night.. don’t find it does much for the legs but it does help make me fall asleep faster

[involuntarydancer in reply to Kittykat1234]

Lots of people on here take tramadol with considerable success. I am delighted it works for you. Enjoy the peaceful sleep!