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I usually feet better during or right after a transfusion. It depends on how low my hemoglobin was when I got the transfusion. If it is really, really low, like in the 6-7 range the effects are immediate.
Thanks Len for the honest assessment of taking Luspatercept. I’m going to try one more round and then if I still feel crappy after the shot that will be it. I can now go 3-4 weeks without a transfusion and will limp along that way for a while. I don’t think taking a med that makes me feel awful is the way to go.
I’ve had one dose of Luspatercept and have had so many side effects I think it will be my only one. I get short of breath from doing anything and the fatigue is severe. In addition my blood pressure is low and I get dizzy easily. This is no way to live. I see my dr in two days and will discuss other options.
I too have mds-rs and was diagnosed When I was 63. I was also diagnosed with an autoimmune system disease, GPA, at the same time. These two diseases often fight each other. I have since developed heart and lung issues, exacerbated by low hemoglobin. The one thing I can say is that your daughter’s doctors all have to work together to develop and manage a treatment plan. You will also need to be her advocate and stay on top of things. My primary care doctor is my quarterback and makes things happen between all the drs when necessary. I’ve been taking Revlimid for 6 months and it has helped keep me transfusion free. MDS-RS is different for everyone. I’d suggest you get really good at understanding a CBC so you know when to worry and when to relax a bit. A positive attitude helps. Good luck!
Good question! I’ve been thinking the same thing lately. I’m 69 yrs old and was diagnosed 5 years ago with MDS-RS. Until recently, those pills and shots kept me going and my body adapted to the slow decline of the hemoglobin. Now I’m on Revlimid with no effect so far, and am having regular transfusions to keep my hemoglobin in the 8-8.5 range. Next we are going to try Lusterapet. If That doesn’t work I’ll be transfusion dependent. I can still work in my gardens for short periods and now have help with the housework but can do little else without having a nap. The expense is horrendous but with Medicare, a supplement policy and grants to help with copays the out of pocket is low. At some point I’ll have to reconsider treatment but as long as there are still options I’ll check them out.
I’m a 68 yr old female and I’ve had MDS-RS for 4 yrs. It is a low risk MDS. My hemoglobin is now consistently in the low 8s and sometimes breaks the 7’s barrier. I have not had any blood transfusions and am starting Revlimid today. The Arenesp shots did not work.
Ive found that symptoms and their severity come and go.
I went for a year with little appetite and little interest in food and lost 20 pounds during that period. I saw a nutritionist which helped make the right choices and learned to force myself to eat. Now I’m seldom hungry, but do eat okay. I’ve found that having food available for a quick grab, works the best. Going to the grocery store and trolling through the deli and prepared fresh foods is great. I seldom eat the same as my husband. Protein is key.
This is a hard disease to deal with. Having the support of friends and family helps a lot.
Good luck on this odyssey.