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cerbysam
ParticipantI received 2 units of blood on the 13th in place of the Luspatercept . Felt absolutely fabulous since then. Playing golf again, gardening and staying very active. I was so sick when taking the Luspatercept. I will see what my Doctor at Dana Farber says about starting it again. Hope we can find something else that works just as well and does not make me so sick. Thanks to all that responded to my post
ParticipantI had my second shot about a week ago and my life is miserable. I am dizzy in the morning to the point I have to sit down a lot. When I lift things my arms feel like I have lifted 80 lbs. My legs are week to. Short on breath when I try to even do simple yard work. I golf at least 3 times a week and now I am afraid to. Was a big pickleball player and I am even afraid to try it feeling like this. None of this happened with the blood transfusions. Now I am preparing for a big trip on September 19 and I sure do not want to feel like this on the trip. Talking with my Doctor after this holidays weekend and pray that we can do something to stop this.
ParticipantThank you Marc. Very helpful.
ParticipantI may have to go on INQOVI some day. From what I have searched it is over $7,000 per treatment. Will your part D drug coverage pay for this? I am selecting an insurer soon and want to make sure I am covered if it is ever needed. Thanks for all of you help.
ParticipantMine went away as soon as the weather got cooler so not sure it had anything to do with MDS. Never had any pain.
ParticipantThankyou Michael. This will make a big difference in what company I go with for part D.
ParticipantThanks for all of your help. I was afraid that I had to buy a really really part D coverage but now it looks like Medicare will help with this. Hope I never have to use it. Fortunately I have been stable since diagnosed in 2014. Thanks again for your help.
ParticipantI would not be eligible for any help so I just hope it does not progress. Diagnosis is low risk with ringed siderblasts. Thanks to all that responded. I am surprised that when you type the drugs into the medicare site that it does not even recognize them.
ParticipantThank you so much for your response. I have had the original vaccine so I hope it works.
ParticipantThank you for the information.
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