Looking back

[joepublic]

I am late 60's & have had RLS for as long as I can remember & started out on Pergolide as I was experiencing minor irritation in the autumn/winter months so treated them like I would for any headache - popped a pill when I needed it.

Later I was told how great Ropinirole was, so switched & took it again when needed.

The augmentation must have ramped up the symptoms & I took it full time only to end up with rampant augmentation. Now I've backed out of Ropinirole & am on Targinact & Gabapentin with a few attendant side effects - Insomnia, some RLS symptoms & constipation.

I do wonder if I backed off everything , would I revert to the milder symptoms I had with Pegolide affecting me just in the darker months when activity is lower? That is far more manageable.

The trouble is you never sit face to face with someone who knows this stuff.

[Elffindoe]

Hi, a good question.

Since you're taking both targinact and gabapentin and still having RLS symptoms, it seems unlikely that you could stop these meds unless you replace them with something substantive.

I also doubt that you'd only need this in the winter either.

Pergolide is no longer prescribed for RLS. I'm not sure why, but probably because its a dopamine agonist (DA) and the non-ergot DAs were thought better.

This probably means that pergolide has the same issues as the other DAs.

The recommended drugs for intermittent RLS are either levodopa, a benzodiazepine or a low potency opioid, tramadol or codeine.

However, "intermittent" means only occurring less than twice a week, not times of the year.

Hopefully, you've looked at other things, iron and aggravating factors to see if these could be improved then you may be able to reduce the meds.

Especially the targinact, because this will be contributing to the insomnia/constipation.

Alternatively, you could explore remedies for better management of these.

One further thought. Since originally your RLS was worse in winter then vitamin D may he a problem in your case.

Correcting vitamin D deficiency is known to help with RLS.

[joepublic in reply to Elffindoe]

It was mainly the shorter days causing me to settle down for the evening at an earlier time - in the long days I am 'pottering' all the time until around 9 PM.

I do take a Zopiclone (sleeping tablet) when I need to but the RLS even fights that and I am still up & about by 1-2AM.

I do think I jumped the gun & went onto the DA's too quickly before I realised what they would lead to. I wonder if I've contributed to this monster.

I am just curious to see what residual agony I would be in if I reversed out of my current meds & whether that would be better or worse than life as it is - just a thought really which I would love to discuss with my consultant if I ever get to see him.

[Elffindoe in reply to joepublic]

I think a lot of us jumped the gun into DAs, but I think it was largely because we were mislead.

[joepublic in reply to Elffindoe]

Very true but when you are offered a 'cure' you just jump at it.

[Elffindoe]

Exactly! Then we find out it's not a cure, it's a curse

[joepublic in reply to Elffindoe]

That's a good description of RLS - or even torture.

[Elffindoe in reply to joepublic]

I was actually thinking of the DAs, they're a curse.

[Birdland in reply to Elffindoe]

So true. DAs are a curse and I curse the day I started them. A devil drug.

[Anninvest]

I will put in my 5 cents. I have been suffering of RLS since I was 18. Now I am 84 and I have severe RLS. The doctors gave me mostly Parkinson medicines that have not helped me a bit. 25 years ago, a Neurosurgeon from Kaiser Permanente in Los Angeles, Dr. Enes, prescribed 3 mg Clonazepam, 2 mg Pramipexole (Mirapex) and 3 tablets of acetaminophen/codeine (Tylenol 3), 300 mg/30 mg each ( that is Paracetamol/Codeine for the Europeans). I have never had a syntome since then. He mentioned not to allowed any doctor to lower the dosage. Find a Neurologist specialized in RLS and try to convince him to prescribe the above for you. It wouldn't be easy. Good luck.

[joepublic in reply to Anninvest]

I find it so difficult to navigate the variety of advice I get - it's also so difficult to change horses.

[LotteM]

I can imagine, Joe, that it is difficult what to do with all the different experiences and advises. Always start from you; we are all different, we often say on here. Listen to your body. If you are not satisfied with your current (lack of) control of your symptoms then you have to weigh the pros and cons of changing your current treatment. Your current combination is one mentioned in the guidelines for more difficult to treat RLS. More people experience insomnia on Targinact (or Oxycontin, the relevant substance in the Targinact). And gabapentin may help with that. You don't mention the amounts you take of each, but a little more gabapentin may help. But go slow to find the minimum effective dose.

You also wonder what your symptoms would be like without medicines. That is 'easy' to find out. I use brackets, because the process may involve a fairly long period of increased symptoms (due to withdrawal, but that should settle in say 1-2 weeks) followed by .... that is what you will not know and want to find out. Reducing and stopping your meds can be done, but think about tapering down. But the decision when to start taking medicines again when the symptoms won't settle is a difficult one and it may take some time before they are effective again. I would not start this 'experiment' without a good and deep thought about the pros and cons and potential difficulties etc. And maybe nit without discussing it with your doctor, although they are mot always knowledgeable and/or helpful about such a process.

I wish there were clearcut solutions and advises, but I am afraid this wide variety of option is what you will always get. I hope you come to a sound and wise decision. If we can help in any other way - ask!

[joepublic in reply to LotteM]

Thanks for that - it makes sense & helps.