DA damage.

[kelirock]

I was alarmed to read there could be long term damage from using this type of medication. I was never informed of that by the neurologist who diagnosed me with RLS... bugger. Could someone more informed please advise me of what the long term affects could be as I can find scant information on the subject. Thank you.

[Hidden]

There's a lot of information that neurologists don't tell you when they diagnose RLS and prescribe a DA becasue they know no better.

They don't tell you that DAs can cause augmentation or Impulse Control Disorder. They don't warn you of the side effects such as insiomnia. They don't Tell you about the triggers that might have caused it in the firstvplace nor anything else that might make it better or worse.

In quite a few cases they ignore the law of informed consent which is arguably illegal.

So, please excuse the rant, but it doesn't suprise me that they don't tell you that DAs can cause permanent damage. It's probably because they don't know.

One of the factors in RLS is a lack of dopamine receptor sites in neurons (nerve cless) in a particular part of the brain. There isn't a alck of doapmine, there may in fact be an excess of dopamine.

DAs, as the name indicates, stimulates the receptor sites and makes them function better. Unfortunately, DAs also raise dopamine levels even higher.

One of the consequences of long term DA use is a "downregulation" of receptor sites.

There are quite a few studies demonstrating this effect .

However, as RLS is due to dysfunctioning receptor sites, the downregulation makes the situation worse. This ls thought to be the cause of augmentation.

When DAs are withdrawn and dopamine levels fall, the "downregulation" may stop and some receptor sites may recover.

Some might not recover so this will be the permanent damage that occurs. i.e. even less functioning receptors sites than before the DA was started.

This is demonstarted by the fact that once you've experienced augmentation, stopping a DA and starting again or starting another DA more quickly leads to augmentation.

The effect of permanent (further) loss of receptor sites means that the RLS will be worse than it was before starting a DA.

[kelirock in reply to Hidden]

Thank you Manerva, you are a font of knowledge always. I was told nothing about any of this plus I was initially started on 0.5mg of Sifrol which I now know was a huge dose (for me). I am still withdrawing from Sifrol and using Lyrica, Cannabis oil and a couple of puffs or marijuana at night this combination seems to have dampened down the withdrawal symptoms. So far I have had an easy ride compared to some of the folk who describe their symptoms on this forum.

[Hidden in reply to kelirock]

0.5mg of pramipexole is quite a high dose.

I was on 0.75mg!

It took me ten months to withdraw, but I didn't really notice any withdrawals, I was very lucky. I only took gabapentin, which I still do a year later. I also take it for nerve pain.

It sounds like you're doing really well and I think once you'r completely sifrol free, it will be so much better than suffering augmentation and being dependent on sifrol.

I only took pramipexole for 9 years and it's hard to say if it's left any permanent damage. I can only say that before having to start on pramipexole because a course of an antidpressant had triggered severe RLS (which the neurologist never mentioned) I only had mild symptoms.

Gabapentin does now control my symptoms, but when they do occur they are not the same as they used to be before the DA.

In my pre-DA years I used have the crawly feeling and urge to move in my legs. In my DA years I had twitching in legs, arms and shoulders.

On the (very) odd occasion I now get symtpoms, for no more than about ten minutes, I twitch, legs, arms and shoulders. They're only little twitches, but they're all over twitches.

[kelirock in reply to Hidden]

What a wonderful outcome for you regarding your withdrawal from DA.... I made a mistake with the dose I am now taking, it is a quarter tablet of a 0.25mg tablet. I saw my GP this morning he said it's nothing, I should be able to just stop it at any time without any problem.

[Hidden in reply to kelirock]

The last dose I took was a quarter of a 0.125mg tablet. However before that I reduced in steps of half a 0.125mg tablet.

I took half a 0.125 for 4 weeks, then a quarter for 3 weeks, then stopped. You could try stopping from 0.0625mg, it might be OK, but it depends how long you've been on that dose.

Your GP is wrong however, there is evidence that the last reduction despite being small is the worst.