Safe ropinerol taper ?

[Neddieis1]

I am tapering ropinerol and am now down from 3 mg to 1 mg. I got here by accidentally going Cold Turkey for a week when I thought I was cutting ropinerol in half but actually had replaced it with another med. It was hell but I survived. Now I want to get totally off it.

my ferritin when tested a month ago was 40 so

I started taking oral Fe at night and I think it helps. I will see a neurologist at the end of the month whoI hope will prescribe gabapentin and or iron infusions and possibly sleep aids for this last phase.

My question is will I cause any damage besides extreme discomfort and lack of sleep if I go cold Turkey again? I am retired so can survive lack of sleep and low functioning for a few weeks.

is there more I should consider??

Thank you for this space to share and learn and get support.

Lynn

[SueJohnson]

No damage but it will be worse than doing it before because the last reductions even if done slowly are worse. Can you get a low dose opioid to help you temporarily through it? Also you might want to wait until you can get a prescription for gabapentin to go cold turkey since it takes 3 weeks for it to become effective. Normally one would start it 3 weeks before one is off ropinirole.

[Joolsg]

There are different views on this. Dr Earley and the team at Johns Hopkins think it's best to reduce quickly over 3 weeks because the withdrawal is hellish and it gets it over more quickly. Others, like Dr Buchfuhrer and Winkelman think it should be done very slowly over at least 6 months, waiting for RLS to settle after each small reduction before reducing again.I would try reducing by 0.25mg and observe the symptoms. If they settle after a few days, then slower is probably better. If they don't settle, then it may be better to reduce more quickly and get the suffering over with.

As your ferritin is so low, try to get an iron infusion as that will help enormously. In the meantime you can take ferrous bisglycinate every other night.

[Neddieis1 in reply to Joolsg]

why ferrous bisglycinate every other night? I have been taking nightly.

I did try to go from 1 mg to .75 and it was bad. I decided to stay at 1 mg till I could afford to be sleepless and in distress. I may wail to see if I can get iron infusion. Thanks

[SueJohnson in reply to Neddieis1]

Taking it every night is the best way to take it since you have such a low ferritin level to bring it up more quickly. However take it at the same time every night so it is at least 24 hours apart since if it is closer than that it is not as well absorbed.

[Joolsg in reply to Neddieis1]

There are studies on hepcedin blocking iron absorption. This one suggests every other night. I managed to raise my ferritin to 145 by following this advice.Links attached.

pubmed.ncbi.nlm.nih.gov/314...

[WideBody in reply to Joolsg]

The are multiple studies showing low iron and low vitamin D are correlated. For example

ncbi.nlm.nih.gov/pmc/articl...

Vitamin D blocks hepcidin and aids in iron absorption! This was key for me being able to raise my ferritin.

Don't forget Vitamin D. If you are low, take Vitamin D3 about 10,000 IU with a fatty meal, preferably breakfast or lunch. Vitamin D can mess with sleep, doesn't affect mine though.

Good luck!

[Neddieis1 in reply to Joolsg]

thanks for your help.

[SueJohnson in reply to Neddieis1]

Hepcidin does block iron absorption which is why you shouldn't take it any closer than 24 hours. The normal advice is every other night to prevent one from taking it within 24 hours.

[Irmajs]

you definitely want to wean off Ropinrol. I did it in about 3 wks time from 2mg to 1mg then .5mg then off. Decrease every week. For me my augmentation was so bad, I had RLS day and night on it. During the day I couldn’t sit for longer than 20 min without it. As I decreased the dose I actually started getting less RLS as it returned to only being in the evenings and nights. Yes you do need get your ferritin level up

I do hope you find a better neurologist than I did. The first one just kept raising my Ropinrol dose when I complained that it wasn’t working. The higher the dose, the worse it got. At that time I was suffering from augmentation and I was unaware of what augmentation was at that time. I started doing my own research and that when I got a different neurologist (supposedly specialist in movement disorders). Everything I tried had horrible side effects. So now I successfully manage with CBD (for RLS) and 12mg THC (for sleep). I wonder if CBD would help you during you weaning off. Worth a try without side effects of other meds.

Good luck.