How often can I receive another Iron infusion?

[JPB5]

Received my first iron infusion in Nov. 2020. Started to work at the end of Feb. 2021. Was able to wean off to a half patch of neupro a day by end of March.

Was taking 1mg of neupro daily before the infusion for 4 years.

Thanks

Jim

[WideBody]

It depends on how quickly you lose iron. You may be able to keep your iron levels up with supplements. I got an infusion and began oral supplementation 8 weeks later to see if my body could absorb the iron. I hope I never need another infusion. I monitor my levels every 4 months. Once I get the hang of it I may do it every 6 months.

I think a full iron panel would be necessary before any infusion. Iron levels would have to be significantly low before any Dr (around here) would prescribe an infusion.

[JPB5 in reply to WideBody]

Thank you- will go get my iron checked.

[Kakally in reply to WideBody]

Hi WideBody, I was wondering how you have been getting with your iron infusions. 1, how quickly your ferritin levels drop 2. Are your TATs remaining below 45%? 3. Do you have a ‘symptom threshold’ level of ferritin when the symptoms start becoming bad/intolerable 4. What dose of other drugs are you needing for maintenance of your RLS symptoms? Thanks for your information/help with this

[Kakally in reply to Kakally]

TSATs

[WideBody in reply to Kakally]

Good morning! It took 18 months for my ferritin to go from 200 to 30 when I stopped supplementing. I got my infusion in 2019 and I hopefully have no need for another one. I supplement with ferrous bisglysinate, 45mg a night with 1gm of vitamin C. My last TSAT was 36 percent (two weeks ago). I try to get a ferritin of 200. Last test was 158 ferritin. I willl probably just stay at the current dosage, but may take extra and days I do long distance biking.

If you are low in iron, I most highly recommend Dipyridamole. 225mg a night really helps my RLS.

pubmed.ncbi.nlm.nih.gov/341...

Since Dipyridamole, I have stopped all other medication. (Pregabalin was the last). At this point, I have tried all the meds, Dipyridamole works the best for me.

[Kakally in reply to WideBody]

Hi, thanks very much for your reply. I’ve had numerous infusions which work very well for me but my ferritin drops back down over 6-10 months . My symptoms return badly once my ferritin goes below 400ug/L. despite iron supplements. I can’t take dipyridamole because I have a bruising disorder and I fing want to risk it. I’m pretty happy with things but my last transferrin Sats was close to 45%, so will have to go steady and wait as long as possible. All the best to you and I am very interested to hear how things go for you over the years. Where do you live . I’m guessing in the USA. I’m in the U.K. and have had to fight for every treatment over the years. Docs need education in RLS . It needs to be on the medical school curriculum 🤞.

Best wishes

[Kakally in reply to WideBody]

I do long distance walking 😬👣👣..