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August 28, 2021 at 12:49 pm in reply to: Are MDS Patients considered “immunocompromised” for booster purposes? #54874
Jimmy Greenhut
ParticipantHad my 3rd shot of Moderna 10 days ago
ParticipantI got the vaccine. 2nd shot was more of a sore upper arm & swollen. That was my only side effect. On Revlimid & my #’s are low.esp WBC & Neut Ab.
ParticipantDavid, B-12 should show in your blood work. Mine was fine. The Dr wanted me to try it regardless of blood work, I got a series of B-12 while on Procrit 8 mos ago, which didn’t help me at all. No change in energy. Currently on Revlimid hoping to cut my transfusions. Give it a try, as it might work for you. GL
ParticipantNancy, Thank you for sharing your experience with me. Yes thank god for Ins. I’m hydrating & have dry skin on face & scalp. My RBC has dropped,the transfusion only lasted 2 wks. WBC holding. Best of luck to you too
ParticipantStacey, Thank you so much for your input & game plan. I’m happy it has worked for you. I’ll be getting the script next week as paperwork etc… delays it. It will be for 10mg
ParticipantTom, yes I was warned with rash & WBC count dropping. I have RS-T non 5Q. I tried Luspatercept #’s really didn’t bounce w/ side effects. Procrit 60k units weekly didn’t help either. Glad Aranesp is working for you 🙂
ParticipantWai, read the other comments under Luspatercept. GL
ParticipantWill, it never really worked although my transfusions were single units every 9 weeks opposed to 2 units. My HB would fall a week after the shot. Had an increase of mg dosage too. Like I stated side effects from the start. I feel I gave it chance at the end of the day. My Onc thought my body would get adjusted to it. Oh well. Procrit 60k units became Intolerant too. But going back on it for the time being. No cold turkey with this disease. I’ll have 2 units RBc now every 8 wks. I see my Dr @ Moffitt mid Oct. See whats maybe in the pipeline? Don’t want to do clinical trials because it’s uncharted with the side effects. Thank god people do these trials to help benefit others. GL Will keep us updated 🙂
ParticipantI’ve been on it since early April. I’m stopping it now as the side effects or worse than the benefits. I’ve had extreme cognitive issues, fatigue & joint pain. My #’s are so so with it. A week ago had the shot HB 9.4. A week later 8.7. I’m going back to procrit 60k units. Luspatercept was approved with only 230 in the study. I’ve seen on FB groups more severe side effects than mine. I’ve reported my info to Bristol Myers & suggest others do so too. At the end of the day, quality of life is more important to me. GL to all,
read the side effects and get blood panels done too with list of side effects. I have. Very importantParticipantPat, I had Dr. Alan List from Moffitt. He has since left tho. He told me as long as there is no tumor involvement you can get a transfusion <9 HB. Would get a 2nd opinion. They’re not walking in your shoes with the fatigue & feeling lousy. GL
ParticipantFantastic!
ParticipantLen, read my previous comments, I have INS, as I’m 60. You can call Medicare to ask? What is the protocol if you’re denied etc… Then take that info to the Dr to see if he could facilitate it.
ParticipantLen, I have hemochromatosis before this all started 2 yrs ago. As transfusions add to your iron content on spleen & liver your Dr should run a ferritin lab to see your #’s. Your Dr’s can write medicare to help with this. In the long run if this drugs works, it could be more nominal for medicare to opt for this drug,seeming the long term issues with transfusions on your organs. It’s $12k per shot + the margin markup which Orlando Health is charging $21k for me. RIPOFF… I’m 60 not on Medicare. Good luck!
ParticipantJanice, I’ve tried EPO injections same. Do you have any side effects? That’s my problem. I’ve had MDS for 2 yrs. So no bounce at all for you? Fingers crossed the increase will give you a boost.
ParticipantMike Abrams & Kenan White, I’m on Luspatercept,had my 3rd shot past Fri. 9wks total. Started with HB @ 8.3,bounced to 9.1 & received a transfusion 2 units 4 days later got HB to 10.8. Fatigue after transfusion no energy. My #’s,10.7,10.5,10.3,10.5,9.8 HB. My Hematrocrit was a high of 32.7,now 28.5. Hoping fatigue along with joint pain will lessen? My Dr doesn’t want to increase the mg of the shot due to side effects.Dr says my body might have to get adjusted to this drug. This drug got rave reviews, hoping it’s going to work for me? Let me know if you’re going to try it? Best of luck!
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