almost cured!!!

[annebrav]

My rls got so bad that not only was it in my legs but it also began to affect my arms. I now take Pramipexole 88mg at lunchtime and at suppertime and then at bedtime I take a 520mg slow release pill. These get rid of any rls about 13 days out of 14 where sometimes I have to take an extra 88mg when watching tv in the evening.

[Aidi-Joll]

Hi Anne

Glad to hear you've got the symptoms under control.

Are you experiencing any side effects?

Keep us posted and keep well.

A-J 🌻

[Madlegs1 in reply to Aidi-Joll]

I'm assuming your doses are as follows-- .088×2 and .52 ×1 - that makes a total of .7 ?

If I'm correct , you certainly should be getting good relief. The top dose for rls is usually 0.5 - after that you are in Parkinson territory and potentially some very serious side effects.

I suggest you research "augmentation" so as to be prepared for that inevitable occasion.

Meanwhile- if you have the "cojons" for it- you could consider lowering your dose- maybe dropping the first .088 dose at lunch time.

All the best.

[involuntarydancer]

I am really glad you are getting relief and hate to bring anything negative to the story but I would agree with Madlegs that that is a high dose of pramipexole. Monitor yourself very closely for forms of compulsive behaviour, particularly gambling or online shopping (or even regular shopping if it is out of character) - they can seem so much like your actual personality but they are not. Also watch out for sudden onset sleep, obviously especially when driving.

I would also urge you to guard against increasing your dose if you find that your symptoms start to outstrip the effectiveness of the pramipexole. This is highly likely to happen and in your shoes I would look for a supplementary or alternative treatment to additional pramipexole.

Pramipexole was a fantastic drug for me - it stopped all horrible rls symptoms but then it turned on me and I had a horrendous struggle to get off it and find a viable alternative.

[231005]

I am on the highest dosage of pramipexole recommended for RLS but it is gradually losing it's effectiveness. What did you find a viable alternative?

[involuntarydancer in reply to 231005]

That is really the million dollar question. There are life-style changes that help some people including various diets and exercise, stretching etc also avoiding trigger food, activities and medications.

If these are ineffective (which they probably are if you are already on the highest dose of pramipexole), your pharmaceutical options are:

Another dopamine agonist, in particular slow release dopamine agonists are thought to be less prone to inducing augmentation, particularly if the lowest possible dose is maintained and iron levels are kept high; or

Anti-convulsant a2delta ligands gabapentin, pregabalin or horizant. These help some sufferers - what I have observed purely from others posting that they work best at a fairly high dose and many GPs start at a much lower dose - say up to 150mg whereas the highest dose is 900mg x3 times daily (ie a total of 2700mg per day). They do cause unpleasant side effects in some people; or

Opiates. In the UK this appears to be predominantly Tramadol with some people also prescribed oxycontin. In the US experts favour methadone for intractable cases.

Keeping serum ferritin levels high (US experts suggest over 100) is helpful in the majority (though not all) cases.

If you find your dose of pramipexole steadily increasing it is possible/likely you are augmenting. You will need to get the pramipexole out of your system in order to find what your baseline rls symptoms are (if you are augmented they will be artificially exacerbated by the medication). You should check out Pippins thread headed 'Augmentation' posted a couple of days ago.

[231005]

Thanks for that. I'm going to see my GP and see what he can suggest for me.