NOT TO HAPPY: Hi all just tell me why... - Restless Legs Syn...

Restless Legs Syndrome

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NOT TO HAPPY

sbark87 profile image
4 Replies

Hi all just tell me why sifferol is given long turm buy doctors he did tell me about the gambling side affect but i told him money is know good to you if your living with cronic rlsbut he never ones mentiond about argumention . i thank all the people who write in this group and dont hold back, i was born in longsiht manchester but live in australia now there is only sifferol thats on thepbs i think for rls ive taken it over 10 years i take 3 . it,s that bad now i just need some sleep Icant find any doctor who knows much about itand they dont seem to want to take the time to help like one lady said it will be very hard to stop after all this timei just thank you all and take care

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sbark87
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Hello

Sifrol (pramipexole) is as you may know a dopamine agonist (DA). The DAs are known to cause an Impulse Control Disorder (ICD) and augmentation.

ICDs include such things as gambling, shopping, over-eating and hypersexuality.

Many doctors don't warn about augmentation simply becasue they don't know about it and manufacturers don't warn about it.

It is hard to stop taking sifrol and the longer you've been taking it, the harder it will be. This is because withdrawing the drug causes withdrawal effects.

In addition if you suffer from an ICD e.g. gambling then this can make wihdrawal even more difficult.

However as long as you continue taking it, you will continue to experience augmentation and insomnia. If you also have an ICD you will also continue to experience that.

Your best option then is to reduce and eventually stop taking the sifrol.

In order to make the withdrawal effects less severe it is best to reduce the dose of sifrol gradually and slowly.

When I was in your position I reduced pramipexole in steps of 0.0625mg that is a 0.125mg tablet cut in half.

I started on 3 X 0.25 tabs

then 2 X 0.25, 1 X 0.125 and half X 0.125

then 2 X 0.25, and 1 X 0.125

then 2 X 0.25 and half X 0.125

then 2 X 0.25

and so on.

I made the reduction once every 4 weeks but you could try it more quickly, but I wouldn't suggest any less than 2 weeks.

You could also start taking a replacement for the sifrol.

The standard alternatives to the DAs are either pregabalin or gabapentin. These do not cause augmentation or ICD.

I believe these are available on the PBS.

Unfortunately, these don't work particularly well whilst still suffering augmentation nor do they really help with withdrawal effects.

A more effective help with withdrawal effects will be an opioid. Quite a few people now in Australia have managed to get prescriptions for buprenorphine.

I'm afraid you're going to have to educate your doctor. You could for example refer them to the following link.

pubmed.ncbi.nlm.nih.gov/274...

I also suggest you contact Shumbah, another Australina member of this forum who can give you more information.

healthunlocked.com/user/Shu...

The other thing you can do to alleviate augmentation is to have a blood test for ferritin and if it is below 75, then start taking an oral iron supplment.

More information here

sciencedirect.com/science/a...

sbark87 profile image
sbark87 in reply to

Thank you for your time and the help you gave me .Do you think a vape pen with marijuana would help with the with drall. im only asking if it would be less stress you no what i mean . I cant go on like this it's very hard to find a doctor who will give you the time and you walk in and he says what are you here for and only gives you five mins of his time how ever hard it is i have to do it i cant go on like this thank you

in reply tosbark87

I'm sorry you feel your doctor doesn't listen to you. I would have thought however your health care system is financed that doctors are paid to help you. It's sad to think that their only motivation is their salary, a little empathy and compassion would be helpful.

Some people do find that marijuana can help with RLS symptoms so you could try vaping it.

kelirock profile image
kelirock

Hello, I was prescribed Sifrol about a decade ago when I was assessed by a neurologist. Neither he or my GP warned about the side effects so I kept taking it until I augmented twice then thought I want to do something about this. I reduced the Sifrol in a similar way to what has been advised by Manerva. It took a fairly long time but I managed to talk my GP into giving me a script for Lyrica. As the dose of Sifrol got less, not only was I taking Lyrica but I then introduced a marijuana smoke 2 - 3 puffs at night and I purchased some Hemp oil. This combination has kept me comfortable and I rarely experience side effects or break through symptoms of restless legs. If I do start having the commencement of RLS I take some Hemp Oil which can be purchased from Amazon. The most distressing thing I suffer now is involuntary jerks of my hands and feet sometimes but increasing in frequency, this I believe is related to the Sifrol. It is an evil drug and you are wise to slowly cease it.

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