This is my first post in this group since I was diagnosed May of this year.
I am 47 years old and have had RA for 17 years diagnosed at 30. I have taken methotrexate for most of that time, then Humira and now Xeljanz. My doctors have
no idea where the Leukemia came from. Anyone else have RA? One of my Drs mentioned my RA treatments could have caused this. I am in watch and wait with just an elevated white count at this point. Lots of fatigue and anemic taking iron to fight that off. It really helps me to hear all of your stories. Thank you so much for sharing!
I welcome any input.
Written by
KLH1972
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Yes. I only took Humira for a short time. All of the drugs to "help" cause issues. You have to decide if the drug is worse than the disease you are fighting.
It will be important for you to try to get good communication between the specialists. Some drugs for one of these conditions may not be good for the other and vice versa. But some drugs like rituximab for example are used for both conditions. So you do need to make sure your experts talk to each other and consider the opposite condition but hopefully your CLL won’t need any treatment for years. Some people never need treatment for it.
I was diagnosed with RA in 2002 , and put on methotrexate, which meant I had to have monthly blood tests. Two months later my blood test showed CLL. I have been on W&W ever since. My spleen is now enlarged as are some nodes, but my haematologist says it’s not yet time for chemo. A hystopathologist told me years ago, that she was sure there IS a link between CLL & RA but no real link was noted at that time. I had constant inflammation and she hinted that it could be that, that set off the CLL. They ARE both B cell abnormalities , and my personal opinion is that they ARE definitely linked. All the best with your future, but hey, I have had it for 17 years now, and still on W&W.
I have taken Methotrexate for about 15 years. Still take it for joint issues but doctors could never confirm RA/Psoriatic Arthritis. I’m seronegative on the tests for both but have the symptoms. I had a very short term use of Humara, about 8 weeks, in 2016, with symptoms of CLL emerging during that time. My rheumatologist ran bloods to check out the cause of the symptoms and found the out of range white and absolute lymphocyte count. That led to the CLL diagnosis. Blood results were just barely above the low range required for CLL diagnosis. Further testing revealed my 13q deletion. In checking prior blood test results I found that my white blood and absolute lymphocyte count had been elevated for at least 6 months, possibly longer. That eliminated Humara as the “cause” for me, although I do believe the Humara brought on a reaction that brought the CLL to light.
My dad had non-Hodgkins lymphoma so there was a link which could have been a factor in my developing CLL. The Methotrexate may have also contributed, as could the stress of my best friend, mother and step mother deaths within a 6 month period in late 2013 to mid 2014. I also was overweight and had had an overactive immune system/allergies before the joint problems began.
Which of these was the factor that caused the CLL? Not known. When did the 13q deletion occur? Not known.
In struggling with all of this since diagnosis, I have come to the conclusion that while I would like to know the answers, I cannot get them now or probably in the future. Acceptance of my new reality without needing to know the when, where and why have brought me more peace of mind than continuing to seek unknowable answers. It has also freed my mind to learn as much as possible about my disease so I can keep myself as healthy as possible now and be prepared to make good treatment decisions with my doctor at some point, hopefully in the far, far future.
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