[Tommy Daniels]

janis hamanda,

While waiting on the FDA to approve Luspatercept I read the results of the clinical trial which said that 37% of those patients benefited from it such that they were able to go a year without a transfusion. I tried it, one injection every three weeks for five months. I became very short of breath and tired (two of the know side effects), stopped taking it, am now back to biweekly transfusions of 2 units, and only get short of breath at about Day 9 or 10 following a transfusion when my HGB goes down into the 6’s.

However I have read accounts from others in this forum who have benefited from Luspatercept.

[Tommy Daniels]

I’m due to get my 7th Luspatercept injection this week and will talk to my doc about stopping it. Since starting it on May 15th my situation has greatly worsened: can’t walk 15-20′ without stopping for a rest (very short of breath); arthritis in hands and feet hurts much more; require 2-3 more hours of sleep daily; need for 2 units of blood doubled to every other week instead of once monthly; and strength has considerably decreased. It may be a stretch to blame the sudden worsening arthritis on Luspatercept but I’ll know for sure when I’m off the drug. Prior to starting it I could let my HGB get down into the 6’s and even the 5’s before getting a transfusion and I didn’t have any of the above issues. However now they’re occurring when my HGB drops into the high 7’s or low 8’s.

[Tommy Daniels]

LUSPATERCEPT

In 2006 I was diagnosed with MDS – Refractory anemia with ring sideroblasts (RARS) – Siderblastic Anemia.
For the next three years my treatment consisted only of biweekly doc visits for monitoring. In mid 2009 my HGB was bouncing around 8.5 so I started weekly Procrit 40k self injections at home. As a disabled veteran the VA Pharmacy in Charleston, SC shipped Procrit to me every six weeks. A few months later my doc increased the Procrit to 60k injections which got my HGB into the 9’s. Because a contaminated batch of Procrit in late 2010 we switched to Aranesp 140 mcg (same drug, different name) injections and I’m still using it.

In latter 2011 my testosterone level was 200 (at the bottom end of the normal scale). Because of that and also that testosterone treatments give you a 1.0 bump in HGB, my doc put me on Androderm Cream. I didn’t like the messiness of the cream so we switched to biweekly testosterone injections and through today have continued it. By 2012 my testosterone level was 493 but we’ve continued it for the bump in HGB.

Sorry but have to conclude. In December 2011 I agreed to participate in a clinical trial with Revlimid but it backfired and gave me Stevens-Johnson Syndrome (some bad stuff). For nearly a year in 2015 and 2016 for almost a year I tried chemo with Vidaza. HGB was up and down but ended up no better off. I began getting 2 units of blood in transfusions; lately I’ve needed transfusions every two weeks and tomorrow will have my 33 transfusion. After one my HGB goes into the 9’s but on Day four afterwards the decline begins again. I usually wait until HGB gets below 7.0 to get another transfusion. At times it’s gotten as low as 5.3.

I’ve had five Luspatercept injections but it doesn’t seem to be doing any good despite increasing the dosage by 25%. In the clinical trial Luspatercept only enabled 37% of participants to go one year without a transfusion so I must be in the reciprocal. In the last two months I’ve been getting very short of breath – can’t walk 20 feet without having to rest. My doc won’t tell me how much time I have left but having read some of the above posts I’m “getting my affairs in order.”

Blessings to all of you,

Tommy D.

[Author]

Posts