[Kas]

EPO shots and MGUS - are they safe to do?

by Kas on Sun Nov 01, 2015 12:27 am

I have renal dysfunction, probably due to my sarcoidosis, and have had anemia with it for a few years before my MGUS was discovered in January 2013.

My anemia, although pretty bad ( 89- 90 for hemoglobin count) has not given me any symptoms other than being very pale ( then I am a redhead and live in Canada!) and some hair loss/ thinning as I have aged ( now 60 and female). I have very good energy, am able to exercise daily, work and am seldom very tired, and never nap in the day and go to bed pretty late. I think my body has become used to this level of hemoglobin, and my hematologist told me it was my new 'normal' and as long as I stay stable, not to worry about it. He said I have the anemia of chronic disease. My BMI in 2013, with this level of anemia, showed me to be MGUS. My ferritin panel comes back in the middle of the normal range, despite losing so much blood in the testing I am always having done, so it does not appear that I need an iron supplement, although you would think I do, given that I do not eat red meat and am on a gluten - free diet and each my protein intake more than others. My blood smear does show evidence of anemia ( ovalalytes, target cells, Burr cells). I lost my spleen 12 years ago to get my sarc diagnosis. Despite all of this, I remain, thankfully, pretty well, and do not seem to get colds, flus etc on my protocol.

I am using the Marshall Protocol to treat my sarcoidosis, and my renal function is all over the map with it- my creatinine can be as high as 149 and as low as 114.

Now I am being sent to a nephrologist for a consult, and I know that I do have very low EPO levels. There has been mention of my needing EPO shots. Would this be OK to have with my MGUS, and how safe would they be for me to take? Given that my anemia is pretty much asymptomatic , and my renal function goes up and down ( right now it is the best it has been in two years), must I be treated to prevent further problems in the future, or can one live with my level of anemia? My heart is fine, my mind is clear and I work and exercise almost daily for about 20 minutes.

I am scared the EPO shots could cause me more problems than the anemia.

Any suggestions here, please.

[Gtlnx]

Re: EPO shots and MGUS - are they safe to do?

by Gtlnx on Sun May 15, 2016 11:34 am

Epo is fine with MP but not iron. Have you tried low dose antibiotic to see if iron level improves? Increase dietary iron (veggies) and try to get to hgb 10 without esa.