Reblozyl

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• April 6, 2022 at 2:36 pm #57800
  Walter Golembiowski

  Participant

  I have been on Reblozyl for several injections which are not working. My doctor has given me a few months or so more. I receive 1 or two units each week as needed. What are the symptoms for these final days.

  April 6, 2022 at 4:07 pm #57801
  Andrea Sileo

  Participant

  Hello,

  Are you being seen by a doctor at a Center of Excellence?

  Reblozyl doesn’t work for everyone. There are other options. Has your doctor discussed chemo treatment with you?

  April 15, 2022 at 9:14 am #57824
  Karen LaSota

  Participant

  My partner was on this drug without any good results – just a lot of side effects. In clinical trials – this drug only works for about 1/3 of the people taking it.

  Some people have good luck with weekly blood transfusions and others have low dose chemo protocols.

  Make sure you get a 2nd opinion if you need it. Oncologist and/or hemotologist.

  April 25, 2022 at 7:11 pm #57876
  Linda

  Participant

  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.

  April 26, 2022 at 9:06 pm #57928
  Karen LaSota

  Participant

  Hi Linda
  My partner had the same. Excruciating pain episodes. A full blown seizure that put him in the ICU for two days on a respirator. Also a splenic infarct. The numbers never really went up much for us and we still needed 3 transfusions monthly to keep hemo up to 8. So we stopped it. The FDA does not have much data on side effects from real patients. The pharmaceuticals communicated with our oncologists and that certainly did not work for us.
  Karen

  May 13, 2022 at 4:31 pm #58135
  Jack Allen

  Participant

  Hi all,
  I started Reblozyl in Aug 2021.
  I appeared as the perfect candidate with RARS and transfusions every week.
  On my first dose I got improved platelets and white cells but no improvement
  in my red cells. I thought WTH this not right.
  Dr. said most people don’t respond until they get to the top dose (dose 7).
  I seemed to tolerate the drug, but even after many many shots I would say I went from 7 bags over 6 weeks to 6 bags over 6 weeks. Not helpful enough.
  I just discontinued because I am very short of breath, my O2 sauration is very low, and my lung damage has increased. Perhaps a different problem, but I think it is related to this drug.
  I was diagnosed at age 52, and told to get my life in order. Life expectancy not high. I am now 72 and tried every drug and chemo offered.
  The best one I has was called Revlimid. For over a year I could come off my iron chelator. Easy peasy pill once a day.

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