Off Ropinerole but what next?

[NonnieJ]

After augmenting on Ropinerole, it has taken me six months to come off it.

My blood test showed a Ferritin level of 8 and thankfully I received an iron infusion. Having this, plus more recently with the help of Naproxen, I am totally off Ropinerole and only occasionally have bouts of a much milder form of RLS.

Last night I stopped Naproxen too, although it had already become less effective, sleep wise.

If I had severe RLS a few years ago, was prescribed Ropinerole, had good results with it until the augmentation set in , but am now free of Ropinerole and mostly of RLS too, where has it gone.

I mean if Ropinerole helped then it was stopped, what is preventing RLS returning?

And if it did return what would I need to ask the doctor for?

Should I ask for regular blood tests?

Thank you on this site for all the positive help and adviceI received last year.

I am so relieved to be free of RL, yet I feel it's return is only round the corner. I still get those physical sensations that herald an assault.

Thank you for any replies although I know this is all rather garbled.

Nonnie

[Joolsg]

Brilliant that the iron infusion has helped. Dr. Winkelman has stated that 60% of patients have dramatic improvement after infusions and you are clearly one of them.If I were you, I would get bloods every 3-4 months and if serum ferritin drops, ask for another iron infusion.

It should work again, but if not, pregabalin or gabapentin could be considered instead of Dopamine Agonists.

[NonnieJ in reply to Joolsg]

Thank you Joolsg. But definitely no D.A.s, EVER!!I feel very fortunate that my RLS has calmed down, but it is something you can never forget and I absolutely dread it ever coming back.

I have a phone consultation with my doctor tomorrow and I intend to ask if my blood tests can be regular. I know for RSL sufferers the Ferritin Serum should be at least 250. What is the lowest I should let it drop to, being that for the average person 250 is fine.

Many thanks for your help.

[Joolsg in reply to NonnieJ]

You need to find out what your serum ferritin is now, after the infusion as everyone will respond differently. Usually after an infusion, levels are around 350/400. From reports on US sites, it seems that 350 and above is when the infusion helps.Usually hospitals ask for tests 6 weeks after the infusion so ask for the numbers sent to your GP.

[Horses7 in reply to NonnieJ]

I was told by a Neurologist who specializes in RLS and my family Dr that your serum ferritin needs to be at least 75....never heard of it having to be 250....that seems very high?

[NonnieJ in reply to Horses7]

I was told on here that for non- RLS people that would be fine, but for RLS sufferers research shows that it needs to be 250.

[DicCarlson]

Exactly - where did it go? And, is it lurking in the background waiting for an opportunity to come back? My RLS was sudden onset and severe and oral iron supplements alleviated the horrible "urge to move" - literally in 3 months. But not the insomnia. I haven't taken any iron now in years. I can only theorize that somehow I became iron deficient (absorption issues?).

[NonnieJ in reply to DicCarlson]

It's such a bizarre condition. And yes I said "where has it gone?"!Well last night it found me. Not too much sleep & symptoms not as severe nor continuous, but definitely warning signs.

My doctor had already agreed to test my Ferritin again, as apparently it is 6 months since my infusion.

I have absorption issues because of Coeliac disease.

It's odd about your insomnia continuing unless it was there prior to your RLS.

Nice to hear from you.

Nonnie.