[Linda]

Thank you for the information we have declined the Revlimid my husband is a high risk candidate for this medication at this time because of his recent Stroke, he’s on all the preventive medication but it’s too risky for him. The first time he took this medication it was great he had a year and a half transfusion free, shortly after he got his first blood clot.
Thank you and Good Luck on your journey.

[Linda]

My husband was on Reblozyl for several months and it seem to keep his hemoglobin up to 9.0 which is the highest it’s been since he developed MDS 4 years ago our doctor stopped the treatments due to a possible TIA episodes that are still going on.
The side effects were horrible for him, extreme muscle and bone pain, severe headaches. He’s been off the drug for 6 weeks and still experiencing either seizures or TIAs.
Has anyone experienced anything like this? The odd thing is the doctor wants him to go back on the drug as he doesn’t think after 6 weeks the drug is still in his body although the hospital he was in recently disagrees and stated there could be residual medication still there.
Are the side effects and possible symptoms of a mini stroke worth the risk of going back on this drug with still a poor quality of life on this drug.

[Linda]

My husband is low risk MDS and was put on Vadaza he has done 4 rounds with unfortunately no success,Moffatt suggested going on Reblozyl and his first treatment was today.hopefully this will boost his HMG, he is transfusion dependent. He does not have Ring Sideroblasts and I read that Reblozyl works best If that is present.

[Author]

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