Possible high ferritin from Covid leading to improvement of RLS symptoms for a while AFTER Covid (not during)

[Kakally]

My ferritin rocketed unexpectedly a few months ago soon after I had Covid. As infection and other things can raise one’s ferritin I wonder if that is what happened to me. I also found that my RLS stayed away a lot longer than it would normally do between iron infusions , 10 months rather than about 6 months! i.e. that any cause of raising ferritin will help RLS by increasing our available iron storage . Please let me know if any of you found that your RLS was better (not during Covid) but afterwards for some weeks maybe….?

[SueJohnson]

Yes infection can definitely raise ferritin since ferritin is a marker for inflammation. I found this when researching this. "In the acute (contagious) stage of COVID, the virus thrives on iron and sugar, depleting iron and iron stores in the body. In an effort to protect itself, the body may sequester iron in the form of ferritin" In fact the level of ferritin is used to predict the severity of the infection and the likelihood of hospitalization and even death. In checking for ferritin normally, they say to allow at least 1 month after a cold or other illness. It is interesting that your ferritin obviously stayed elevated for so long. Just kidding but a new treatment for RLS could be to get a mild case of Covid every few months.

[Kakally in reply to SueJohnson]

Yes,. Thank you . I know the ferritin gets raised with infections but I was wondering if many/most people with RLS have found that their symptoms reduced somewhat after a bout of Covid and if so how long for… yep potentially the only benefit of getting repeat Covid every few months…. Hahaha!. Thanks Sue x

[Joolsg]

First week of Covid my RLS was fine. However, I had paxlovid rebound & the rebound infection 7 days later was really bad. My RLS went haywire. For 2 weeks. After an antibody infusion and a week on antibiotics to clear a secondary respiratory infection it went back to 0/40 on Buprenorphine.I have heard of many people having a period of settled RLS during a cold or flu when ferritin is raised.

[Kakally in reply to Joolsg]

I’m sorry you had such a horrendous time with Covid and it’s sequelae. I hope you are totally over it with no Long Covid problems. The infection/ferritin/RLS improvement potentially…., it would make a great study though wouldn’t it..😬👍?

[Joolsg in reply to Kakally]

I seem to have a permanently blocked left nasal passage after Covid but otherwise, I've escaped lightly. If only someone rich would fund trials on RLS. So many areas to be explored

[Kakally]

Definitely. It’s actually fascinating and shouldn’t be such a ‘heartsink’ Cinderella diagnosis 😔😬🤞

[Munroist]

I had two really good nights with Covid. One with the first vaccination and the other when I actually caught it two years later. The effects were very short lived but they both coincided exactly with the start of the infection and were pretty much the only two good nights in the last 3 years. I didn’t get the same benefit from the later vaccinations so it wasn’t a reliable response. Thanks for the explanation, interesting.

[Kakally in reply to Munroist]

Thank you. I do hope you get the good treatment you deserve. I know some people seem against intravenous iron but I believe strongly that if you haven’t yet had your ferritin, TIBC, serum iron and Transferrin Saturation measured , please do as 60% of RLS sufferers can benefit significantly from I-v iron. My ferritin has to be about and above 500microgm/L to keep my symptoms under control. All the best to you anyway. Kate x

[Doctorplacebo]

I had my iron tests done a week after I had COVID--stupid of me but I was so eager to get my tests so I could proceed with my IV iron infusion that I didn't wait. My ferritin was 113 which I assume was artifactually elevated since my % saturation was quite low at 18, and that was after 3 months of oral ferrous sulfate 325 mg daily. I can't remember feeling any RLS benefit from COVID, just really fatigued; but I was experimenting with different meds for my RLS at the time so can't draw any conclusions. BTW, I had no problems with the iron infusion 3 weeks ago. So far no miracle improvement but still hopeful. I will recheck levels at 8 weeks per the Mayo Clinic algorithm. I'm very interested that Katally gets relief with ferritin >= 500. I don't think anyone here in the US will treat me to that level , but I will push for it if still not seeing improvement.