[Kenneth Haag]

Kenan, I’ve experienced much the same side effects as you describe after starting my first two injections. What the literature calls ‘fatigue’ has become unremitting exhaustion. Before Reblozyl I was able to walk a mile or so around the local park, go to the grocery store, etc. Now I’m very unsteady on wobbly, painful legs. Out of breath walking from living room to kitchen. Have nearly fallen in shower due to light-headedness. Fewer transfusions may count as ‘improvement’, but now I haven’t got the energy or stamina even to go outside to feed the birds. I only hope this drug will eventually clear my system and allow me the Quality of Life I got from transfusions.

[Kenneth Haag]

Hello Christine.
Concerning Reblozyl: Please note that I can only report my own experiences with this drug. After my second dose, hemoglobin levels went up and quality of life went down. Among the many side effects listed for Reblozyl, “fatigue” doesn’t come close to describing a condition that, for me, feels more like “zombification”. I feel completely drained of energy, sucked down into a stupor that isn’t relieved by a nap or even a good night’s sleep. My legs and feet are so painful that I can only shuffle along with a cane. I frequently stumble when my legs suddenly buckle, so that I’ve become afraid of falling.
Before starting Reblozyl I was taking Reticrit, but this didn’t improve my HGB levels, so I needed transfusions about every three weeks. But during most of those three weeks I was walking a mile or so in a local park, going to the grocery store and running other errands, feeding the birds, playing music and enjoying my 81st year in the world. Now I sit in a recliner chair and sleep most of the time. With transfusions alone, I at least knew I would have those good days between times. I don’t know how long Reblozyl stays in the system, but I don’t plan to take another drop of it. If you read through the past two years of reports from other members here, you’ll find a good many “cautionary tales” like my own. Wishing you all the best and then some.

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