Discussion in 'General Treatment' started by Justin30, May 1, 2016.
Has anyone had experience using the drug Procrit?
Sorry for the delay, Justin--I had blood volume testing not terribly long after I was diagnosed, and of course the results showed abnormally low levels. I had a course of Epogen around 15 years ago. Very expensive stuff, but I had better insurance at the time. Didn't seem to do anything at all. I don't know of this doing much in ME/CFS, actually, but at the time it seemed like something worth trying.
How are you doing now overall have any treatments helped?
Would Procrit change your blood make up/content if you had autoantibodies or strictly increase blood volume (like IV saline)?
Think it increases red blood cells and increase VEGF.
Used for low blood volume some patients it has worked well for.
From what I have heard.
Procrit is recombinant erythropoietin. It is the hormone that regulates red blood cell production. Taking it would increase the number of red blood cells in your blood. One use is the expansion of blood volume in POTS. Autoantibodies? Now you want to know about the newest area of immunology research and so there is no good answer. However, in doing its job, Procrit cooperates with cytokines, the hormones of the immune system. Specifically, IL-3 and IL-6 are targets. IL-3 stimulates the growth of T cells which do not secrete antibodies; they cover themselves with Ab's. IL-6 has both pro and anti- inflammatory properties. It is useful in healing burns, for instance. That said, cytokines act in cascades, and I can't comment on what happens downstream of the start or to what extent Procrit may change "normal" function. As though PWCF are normal!
Yes, this is what I am finding in general and I wish it was 10-20 years from now where these "newer" discovered autoantibodies matched with an illness that had an actual name. My cardio had mentioned Procrit two years ago when he was mentioning a variety of ideas but he said it is near impossible to get insurance approval. When I researched it at that time (before I had a clue that I had these autoantibodies) it didn't seem like it was the right choice for me.
It seems like it would be a great drug on the balance of scales if low blood volume POTS was DXed easier and the patient had low VEGF.
I wish like at @Kati post on Zika virus the NIH would be rigoroulsy testing and repurposing drugs based on what information they have about ME/CFS currently.
The NIH has enough info already it really needs to use this information to come up with some options.
For example if in a study 5 people out of 20 have X, Y, Z markers than find a drug or drugs that can help those 5. Then on to the next batch...etc.
Zika can spread easily which is very concerning but so many millions have ME and/or Lyme that really need effective treatment options.
The problem with Procrit is that it can cause blood clots.
Procrit has some specific indications it should be used for.
I do not think that long timer experts such as Dr Klimas or Peterson find them helpful.
In my personal case, I usually have too many red blood cells, I am always wandering on the upper limit of normal.
Procrit is good for those who have had massive blood loss and need to stimulate the production of new red blood cells. Again, be very careful of the side effects.
I am always on the borderline or my RBC's are slightly below the range (but in either case, I have no intention of trying Procrit)! Thank you for that info.
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