Testosterone Increases Erythropoietin

I believe the Hb raising property of this drug was unknown until it was tried for a different use and it raised the Hb too high in normal people to be of any use. The unexpected side effect may not have been the original intention, but will most likely be the only real use for the drug.

Would the body recognize that the production of RBCs is now more 'efficient' and therefore slow it down, effectively decreasing hemolysis and its side effects? That would be fantastic!

If the Hb rises, bone marrow activity decreases. Any strategy that raises Hb will have that effect. The actual stated goal of transfusion in majors is to reduce or eliminate ineffective erythropoiesis, as that is what causes many of the problems of thalassemia. Minors can use supplements like folate, wheatgrass, magnesium and L-carnitine to try to cause an increase in HbF, which would help to raise the total hemoglobin level.

Thanks, Andy! I just thought if this drug helps RBCs to reach maturity and doesn't simply increase an ineffective erythropoiesis, would it not shift the actual ratio of functional vs. defective RBCs? I thought herein lies the difference between Luspatercept and something like EPO, because EPO would keep this original 'ratio' and therefore increase the hemoglobin levels but also hemolysis due to an increased number of defective RBCs?

I hope it's not too absurd what I wrote. 

Yes, exactly. More mature red blood cells mean less bone marrow activity, whereas EPO can only help make more of the same. The drug also reduced the iron load. From what was shown in phase 2 trials, I think most, if not all transfusing intermedias will be freed from transfusion completely by this drug and majors will see at least a 50% reduction in transfusion needs. The longer trial has a very good chance of improving on that.
I would love to it it also made available to minors with low Hb levels. It would mean such a boost in quality of life.

Hi Andy,
I can't thank you enough for all of the excellent information you provide!  After realizing that EPO didn't work for me, that Hydrea had some nasty side effects, and that testosterone worked minimally for me, but had potentially dangerous side effects, I decided to follow your nutritional advice, and feel much better than ever! I have also dialed back my training to 3 to 4 times a week, to cut down on the muscle soreness.  But now you have my curiosity up with Luspatercept. I'm beta thalassemia minor with hemoglobin of around 10.5.  What's  your best guess regarding how long until approved?  Again, folate, B 12, vitamin D, wheatgrass, organic E, L carnitine, etc, etc... are fine, but none of this can alter genetic muataions. Blessings, Phil.

Eagerly awaiting for Luspatercept

I think Luspatercept will be approved within a few years. Trials have gone very well for some patients, but nobody knows for certain if they got the drug or not at this point. I think a problem will arise in getting doctors to prescribe it for minor, as it may not be listed as for minors. In that case, a doctor can prescribe it in what is called off label use. I am hoping some doctors will recognize that in addition to the anemia, the ineffective erythropoiesis creates many problems for thal minors and Luspatercept has been very effective in reducing ineffective erythropoiesis. Of course, I'm using logic here, so who knows how it will play out in the real world?

Andy,

Thanks so much for your speedy response!  Your knowledge base is staggering!  If it gets approval, whether or not it is prescribed for thal minor (even off label) is of little consequence to me... where there's a will, there's a way!  I just want to be careful that there does not appear to be any long term, detrimental effects. Blessings, Phil