[Peggy Grubbs]

I meet the criteria and am transfusion dependent.

[Peggy Grubbs]

I am 70 yrs old and have MDS, and am blood transfusion dependent. I have stopped all other treatments for the disease. I also have Vasculitis, an autoimmune disease. I had three doses of the Moderna vaccine because I’m immune compromised. I got COVID, most likely Delta, right before Thanksgiving. I went to a family funeral where there was little masking and no social distancing. My first symptom was a fever of 103.5 which took me to the ER. They gave me fluids and tested me for COVID. I received micro-clonal antibodies two days later and was just tired. We have to live our lives, but be careful. I’m thankful I was vaccinated to help mitigate the disease. I am also grateful that I was able to get the antibodies which I credit for keeping me out of the hospital.

• This reply was modified 2 years, 2 months ago by Peggy Grubbs.

[Peggy Grubbs]

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.
Peggy

[Peggy Grubbs]

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.

[Peggy Grubbs]

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.

[Peggy Grubbs]

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!

[Peggy Grubbs]

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.

[Peggy Grubbs]

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.

• This reply was modified 4 years, 11 months ago by Peggy Grubbs.
• This reply was modified 4 years, 11 months ago by Peggy Grubbs.

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