Learnt the lesson

[Nikon-]

Hi I am 67 yr old Male in Uk suffering from RLS and was prescribed Pramipexole by my gp

Unfortunately I forgot to place my repeat prescription and was reminded last night of the horrible illness that this is. Not a wink of sleep and probably the same tonight till chemist open tomorrow to collect prescription

Good luck to all sufferers

Nikon-

[Line-dance12]

I’m so sorry. I feel your pain! Good luck

[Hidden]

Lesson learned!

It's the same I learned some years ago.

It's a suggestion, but if you have any over the counter paracetamol and codeine in the house, you might find that might help tonight.

Just tonight, don't exceed the instructed dose.

Some other tips -

Order some of your (monthly?) prescriptions early and put by an "emergency reserve".

Order prescriptions to be ready mid week to avoid running out at weekends.

Set an alarm somewhere to remind you to take the pramipexole.

I will write more later.

[Hidden]

Further -

I'm sorry to say that what you've experienced is a fact with pramipexole, i.e. it produces dependency. This is not exactly the same as addiction, you don't get cravings for it, but has elements of it. The main one being severe withdrawal effects when you don't take it. This can happen within 24 hours and is, in effect, is what you experienced.

Some other facts about pramipexole which I think you ought to know. This is the information than your GP should have given you when prescribing pramipexole in order to comply with the law of informed consent and ethical guidance on shared decision making and consent.

This is covered by the acronym BRAN.

What is the Benefit of pramipexole.

What are the Risks of taking it.

What are the Alternatives.

What happens if you do Nothing, i.e. don't take it.

Benefit

Pramipexole can relieve the symptoms of RLS fairly effectively and almost immediately, but is not a "cure" nor even a "treatment".

Risks

Taking pramipexole runs the risk of "loss of efficacy" (it stops working) and two major complications i,e, Impulse Control Disorder (uncommon) and "augmentation", (very common).

The risk of augmentation from pramipexole rises with the dose and the length of time you take it. The risk for 0.5mg (180mcg) is 7% year on year. i.e. 7% after 12months, 70% after 10 years and virtually 100% in 14 years.

Alternatives

The alternatievs to pramipexole for RLS are other "dopamine agonists", (which is what pramipexole is), i.e. ropinirole or rotigotine

OR

The gabapentinoids, pregabalin or gabapentin.

Any dopamine agonist, like pramipexole, has a high risk of augmentation.

The gabapentinoids have a signficantly lower risk.

see this link

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

Nothing

If you don't take any medication for RLS then your symptoms will continue. However, there is a treatment for it and there are other remedies you can try which your GP should have discussed with you.

The first of these is iron therapy. Iron deficiency is a major causative factor in RLS and correcting it can treat RLS.

This requires blood tests for serum iron, transferrin and ferritin.

A simple guide is that if your ferritin is less than 75 then you may benefit from iron therapy.

See this link

sciencedirect.com/science/a...

The second is to discuss if there is anything making your RLS worse = "aggravating factors". The doctor should discuss with you if there are any other medications you're taking that could be making your RLS worse. If these can be avoided it could improve your RLS.

The above have been demonstrated by medical studies.

You could also look into diet and lifestyle factors that may be affecting your RLS.

I suggest you read other posts on this forum some of which are really informative, particularly about augmentation and dopamine agonist withdrawal effects which you may find helpful if you start to suffer augmentation.

Here's some further links to two pages on the same web site. I suggest you also look at the other pages on this site which is the UK national guidance for GPs on how to manage RLS.

cks.nice.org.uk/topics/rest...

cks.nice.org.uk/topics/rest...

I hope you find this helpful.

[Nikon- in reply to Hidden]

Hi many thanks for your reply there is plenty there for me to think aboutI have just spent the last 48 hrs with little or no sleep and the worst effects of RLS that I could imagine hopefully as a short term fix my repeat script will be available today as gps back after weekend. I will certainly follow up on your suggestions with my go and hopefully go forward with alternatives

My mother suffered from RLS for years and I understand now why she reacted the way she did but she had no help from anyone apart from a suggestion to drink tonic water 😊

Thanks again for your support and I will keep you posted on progress

[Hidden in reply to Nikon-]

Please do

[m1946]

I know what you mean!!!I was augmenting on Ropinirole and recall watching the clock on the hour every hour!! But I got to know many of the Netflix films!!

[Nikon- in reply to m1946]

I couldn’t sit still long enough to watch them 🥴