MDS and Rheumatoid Arthritis

[Lori Belhumeur]

Hello everyone, my husband was diagnosed Jan 2013 with MDS. We were not together at that time so I do not know what type he has. His hemoglobin was 8.5, and WBC was 1.2. He receives Aranesp and was taking Neupogen until his WBC came up above 2.3. We got together in November of that year, and his hemoglobin had come up to a 10 at that time. Since that date he has responded great, even hitting 12.7 several times. In February of 2016 he was finally diagnosed with Rheumatoid Arthritis – I say finally as he had complained for over 10 years about his hands, but prior PCP had just given pain meds… this same doctor had also told him he was slightly anemic for 3 1/2 years when in fact his hemoglobin had been below the target 12 that his hematology oncologist shoots for when he has his every 2 weeks labs and Aranesp shot if below 12. In talking with the hematologist last year – regarding the RA he told us that when the bone marrow biopsy was done in Jan 2013 his bone marrow was extremely inflamed… he actually had inflammatory anemia… due to the undiagnosed and treated RA. Fast forward to February of this year… hubby was doing good – had Rituximab infusion for his RA in October – had gone hunting together all November and his hemoglobin hit 12.7 first of December…. then in February he started getting weak and fatigued. More than usual. Talked to hematologist and they checked iron & ferritin levels…. ferritin elevated to 389. Iron was fine. From first of Feb to March 21 he hemoglobin continued a slow decline… March 21 it had taken a huge drop… from 10.8 two weeks prior to 9.3. Needless to say – lots of tests, and only thing we know is ferritin was more elevated 486… caused by inflammation. Rheumatologist and Hematologist are stumped. He had another round of Rituximab infusions for his RA 6 weeks ago, and as of this last Wednesday his hemoglobin is still running 9.4. We are at wits end… trying to figure out what to do…. He is feeling worse than before diagnosed 3 1/2 years ago… He is able to do less than back then – physically.
Is there anyone out there that has experienced this?

[Anonymous]

Dear Lori, Thank you for your post with information regarding your husband’s health. I would recommend that you take him to one of our Centers of Excellence in MDS for a second opinion. We do not give this designation to just any institution or doctor. It’s important to make sure he is not being undertreated and our MDS specialists will help weigh his options to help him with his quality of life. He should be very carefully assessed before undergoing any treatment. Benefits versus risk analysis should be done with any treatment. Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. I hope this information helps.

• This reply was modified 6 years, 11 months ago by .

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