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New Fda Warnings

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I hope this is okay to post, but I saw this on AOL and I know that there are a few people on here who use some of the 3 meds listed, one being Procrit.


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  • 2 years later...

Which annoys me only because despite many researchers postulating that lack of Erythropoietin could be the fundamental problem behind many POTS patients it has never been tested and no studies are available on the topic or are even in progress.

No other medication seems to result in such a profound improvement in many long-term ill patients.

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I take Procrit, but at a very low dose - 10,000 units every 30 days. I can get the injection only if my hematocrit is below 13. I get the Procrit at the Oncologoy Department at Mayo Clinic Jacksonville where I am followed by a hemotologist. This doctor told me that they have virtually discontinued use of Procrit and Aranesp in cancer patients without metastatis. They are concerned about the risk of blood clots coupled with the risk of stimulating cell growth.

After having been told and having read the risks, I have decided to move ahead with these injections. The frequency and quantity of the injection is monthly, rather than weekly, and at a much lesser amount.

I think it is important for people taking Procrit to be followed by Oncology/Hematology to help avoid untoward events.


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  • 1 month later...

Does anyone that takes erythropoietin get their insurance company to cover it? I discussed the possibility of starting the shots soon because we have tried every other option. My electrophysiologist has never used it for treating autonomic dysfunction and is going to call Dr. Grubb to discuss it more with him (I see Grubb as well) but he said the he doesn't think any insurance companies cover it for use of treating POTs only for treating enema and kidney issues. I know it is very expensive so before we even go further with it I needed to see if there is any chance of insurance covering it... and I am sure they will need diagnostic codes etc if I call them directly to try and find out. Also is the "average" treatment a weekly shot or monthly?

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