Following the excellent advice received here, I spoke to my GP to ask for a blood test to check my iron levels and, in the meantime, some medication. She must have been having a bad day because she was extremely brusque: "Ring reception to book a test and I'll put through a prescription for Pramipexole." And then she tried to end the call! I had to get in quickly to ask if I could have Gabapentin or Pregabalin instead. She sounded horrified and said, "Those are controlled drugs!"
Cutting a long story short, I'm now taking Pramipexole 0.088mg at night and have had no restless legs for four nights. That's the good news. The bad news is that it makes my pulse race, even when I'm lying in bed half asleep, and I've had a migraine for four days. I suppose the migraine could just be a coincidence - I get them fairly frequently, though not usually for four days in a row. I no longer want to chop my legs off, just my head!
Thank you again to everyone here who gave me support and advice. What a wonderful community this is.
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Leggy_MacLeg
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It's true pregabalin/gabapentin are controlled drugs. That's not a good reason for refusing to prescribe them though. GPs often prescribe controlled drugs including pregabalin/gabapentin.
Pregabalin/gabapentin are recommended for RLS and in fact are preferrable to the dopamine agonists, pramipexole, ropinirole or rotigotine.
If your GP failed to inform you of the complications of pramipexole, then they have acted unethically.
There are 4 problems with pramipexole.
1) Like all dopamine agonists pramipexole can cause major complications i.e. Impulse Control Disorder (uncommon) and Dopaminergic augmentation, (very common).
2) Of the three agonists, pramipexole is the worst for augmentation.
3) Once you've been taking pramipexole for a while you become dependent and withdrawing from it can be very difficult.
4) When you first try pramipexole its effect is immediate and feels miraculous. This is seductively misleading. The effect lessens and if you start experiencing augmentation then symptoms become significantly worse than they were in the first place.
I suggest you refer your GP to the following web pages.
You can if you wish continue with the pramipexole and you may be able to avoid augmentation for some years. However if you were to increase it to more than 0.18mg then the risk of augmentation significantly increases.
If you don't challenge this doctor's unacceptable conduct then they may continue to treat others in the same ignorant manner.
Pregabalin may be controlled but it’s also effective and in my case had very few side effects and none of them unpleasant to be honest. My GP was fine with prescribing it for neuropathic pain which is it’s main use but as you’ll read in the forum it is also pretty good for RLS, whereas dopamine agonists often lead to augmentation and very difficult withdrawal if you decide to come off them.
Hi Manerva. Can I throw something at you and see if there needs a deeper answer? Who actually comes on here is it, everyone, on Pramipexole, or "just the ones having issues"?
The reason I ask this is that 99% may be satisfied in the long run with this drug without issues. Now my wife has an issue that she is sensitive to drugs, often having side effects. We (this group) seem to be the ones having problems, but the rest of them we don't know about.
I have come to the massive conclusion that in my case (as you know a bit), that before the Doctor prescribes Pramipexole, they should have tried something simple like Paracetamol before you go to bed. Why are they so quick to prescribe a controlled drug?
To Leggy, I'd say consider the alternative first, before you get too deep into Pramipexole, (as I have now learned to my cost).
Your question is a good one. Deep answers have to be longer I'm afraid.
As a simple observation without counting numbers it appears that the majority of people who come to this forum who are taking or have taken pramipexole have issues with it.
It seems similar for those taking/have taken ropinirole and roitgotine but lesser in numbers.
Many people suffer/have suffered augmentation and a lesser number ICD.
I have recognised myself that the number of people suffering these that appear on here may be disproportinate to the total number of people in the world with RLS who have issues with dopamine agonists, (DAs).
This could mean in hypothetical figures that whereas 75% of members taking a DA have issues, only 30% of people in the world have them.
(These figues are completely imaginary).
It could be that as you say it's only the people that have issues come on here and if you didn't have any issue, why would you bother?
However, (there had to be an "however" didn't there?)
The motivation for people being in the forum apparently varies. Not everyone is taking a DA. Not everyone necessarily has any issue. Some come seeking help, some come offering help - or both.
The people in the forum are a cross section of ages, so of those taking a DA some will be young, some older, more older etc, so will have been taking a DA different lengths of time.
Some members appear to have issues within months of starting a DA. Some say they have been taking pramipexole for 10, 15 or even 20 years without any issue.
THEN there are published statistics! This gives a more realistic picture of the scale of the "issues" than just what appears in this forum.
For example
Allen (2014) as cited by (NICE 2020), recorded that 5.3% of people taking 0.25mg pramipexole suffered augmentation within one year and 7.7% of those taking 0.5mg.
Silver (2011) as cited by (NICE 2020) stated that the rate of augmentation due to pramipexole is 7% year on year, so 70% after 10 years with it being virtually inevitable after 15 years.
As far as doing something else before taking out a prescription pad and writing out pramipexcole (or ropinirole, roitgotine or anything) I believe you are correct.
NICE (2020) in their CKS a guidance for GPs point out several things that can be done first before considering medications. Any medication at all!
As regards using paracetamol for RLS. Some people find that it "helps" so that it might be useful (on its own) for mild RLS. Or it may help alongside other meds.
Paracetamol with codeine is possibly likely to be more effective than simple paracetamol because opioids, (such as codeine) are known to affect RLS.
Be aware that despite being over the counter, both are medications and paracetamol is quite toxic. More toxic perhaps than premipexole.
Incidentally, pramipexole is not a controlled drug.
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