Hello everyone.In January I got transcranial sonography done and they found brain iron deficiency. I had ferritin at 150, TS at 30% so they gave me 500mg ferric carboxymaltose. We are planning to repeat it. My question is, those who had BID diagnosed, after how many infusions did RLS pain go away? Did BID went away, also in transcranial sonography test?
In the past when I got iron IV 2 years ago it helped a lot with the pain, but RLS never stopped, I take pregabalin and tramadol, still painful🥲
Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. Some need it improved to 200 or 300. But there is no guarantee that RLS will go away.
Wait for at least 8 weeks after an infusion to check your ferritin again. Otherwise it will give a false high reading.
Ferritin is the best indicator of BID so I don't see any point of doing a transcranial sonography again.
How much pregabalin are you taking?
It’s definitely does not always help. My ferritin level is 1629 and it does not help with my RLS at all.
WOW - I've never seen a ferritin that high.
It's from the phosphorus binders that I have to take with every meal. They are iron based.
Why phosphate binders? I am interested in why you were given phosphate binders.
WideBody, I'm on dialysis - it's a pretty standard medication given to dialysis patients.
thank you
From personal experience. I would say the benefits of an iron infusion took at least 6 months to a year to stabilize. I began oral iron supplements 8 weeks after my infusion. I still take iron supplements 8 years later.
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