Ropinirole stopped working

[Pmt1952]

Hi, I wonder if anyone could help me out, I been in Hospital with a serious chest infection, Since then My legs have been jumping all the time,, day and night. I'm at my wits end. I am still taking my ropinirole 4mg at night, but it not helping. hope someone can help me, I will be seeing my doctor, but there are next to useless, when it comes to RLS. Thanks Perry

[Madlegs1]

That's frustrating!

What medications are you on. Particularly during and since hospital stay?

They might well be causing your problems.

[Pmt1952 in reply to Madlegs1]

I not sure what they pump in to me, a mix of antibiotics and steroids, but they all stopped on the Friday, and I did not take anymore, then on the Saturday I stared with a new drug azithromycin, I thought maybe once the drug was out of my system they would settle down, but that has not happened.

[Madlegs1 in reply to Pmt1952]

Azithromycin does have a reputation for aggravating rls.

[Pmt1952 in reply to Madlegs1]

Maybe, but my legs where playing up all the time, before I started on Azithromycin. So I don't believe that that is the problem. What I would like to know, if there is anything I could take to relieve my legs, even if it was only for a few hours.

[Joolsg in reply to Pmt1952]

Was your RLS totally under control before you went to hospital?If not, it's probably the dreaded augmentation & the only solution is to get off Ropinirole.

[SueJohnson]

An infection can cause low iron including low ferritin. And low ferritin can make RLS worse. You might ask if you can get a low dose opioid to tide you over. Have you had your ferritin tested? If this is the case, improving it to 100 or more helps 60% of people with RLS. But you want to wait until 6 weeks after your infection before testing it. When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not , post them here and we can give you advice.

[kcraig]

My latest Dr. tried me on Methadone (only 5mg, 1xday). Ropinerole didn't work so well for me and made me nauseous. Works great. Zero episodes. Zero side effects.

[Pmt1952 in reply to kcraig]

Methadone, my Dr would have a fit, if I mentioned that, he still think the only treatment is Quinn, talk about living in the dark ages, trying to convince him is a nightmare. In the past 5 year my opinion of GPs has gone down hill, they are not bother about helping people anymore, or at least that the impression they give.

[kcraig in reply to Pmt1952]

Get away from him as fast as you can. If he's not willing to work with you he's not a real Dr. If you notice their strategies, they are just checking boxes. If they get to the end of the list without helping, your out of luck. God forbid they use a little critical thinking.

[Pmt1952 in reply to kcraig]

I agree with you, I have had a word with my nurse this morning, she has made an appointment, with a new Dr, let's hope I can get more sense out of him.

[Jailsec]

I take 2 ropiniRole at night, unless your Dr said not to I would take another half or another 4 mg.

[SueJohnson in reply to Jailsec]

4 mg is the maximum amount of ropinirole. She should not take more.

[SkyCop]

So sorry to hear about this! I know you must be in torture. I was in hospital for Covid and my hemoglobin was so low they gave me iron infusions and it solved my RLS for a month. When I was in hospital I was a lot like you. Thrashing and so miserable. My Ropinerol wasn't working at all. Once I got the iron infusion the ants stopped crawling all over my feet and I could focus on getting better from the pneumonia. Sending my empathy across the Atlantic to you. Hope you feel feel better soon.

[Pmt1952 in reply to SkyCop]

Thank you so much for you comments.

[MemaK]

I take Horizant. It is a slow released Gabapentin. No RLS symptoms in over a year!