Hairy Cell Leukemia Masquerading as Arthritis?

Posted by ptannie @ptannie, Dec 11, 2022

I would like to learn if anyone else has had a similar experience to mine. I was diagnosed with HCL less than 4 weeks ago. For almost 2 years I have been treated for arthritic symptoms and underwent a hip replacement 19 months ago. Ten days after the surgery, I experienced systemic joint pain (everything hurt) that was calmed somewhat with high dose prednisone. My PCP thought I had polymyalgia rheumatica. Rheumatology consult yielded a psoriatic arthritis diagnosis since I did have a history of skin psoriasis. I was treated with trials of Humira, Cosentyx and Otezla. None made much impact on my symptoms. My fatigue was getting worse and my PCP assumed I had a recurrence of asthma. I got a second rheumatology second opinion who checked my CBC, finally. All blood counts were very low and WBC critically low. I was admitted to the hospital, got a bone marrow biopsy and diagnosis of HCL. I'm now 7 days post Cladribine (5 daily infusions). I have zero neutrophils, and hemoglobin was 6.5 last Thursday. I'm encouraged that my platelets increased from 15 to 30. In retrospect I can see that my hematocrit was checked before hip surgery. It was a little low, but no other blood counts obtained and no mention of it at the time. I puzzle over why someone reporting fatigue and vague feelings of anemia doesn't get a CBC. Anyone else been there?

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Wow. What a story. Isn't a CBC kind of routine? Did steroids and/or immune suppressants make things worse at all?

When my mother's hemoglobin hit 7 I had to call 911. Are you getting transfusions or infusions for that?

I hope the diagnosis is clear and correct and that you can have effective treatment for the primary problem and all the consequences of this story.

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@ptannie, welcome. I'm so glad that you have a proper diagnosis now and can move forward with the right treatment. It may surprise you to learn that there is a relationship between hairy cell leukemia and autoimmune disorders, including inflammatory arthritis. I think you'll find this article and recording of a patient webinar presented by Dr. Leslie Andritsos from the University of New Mexico to be interesting.

– 2021 Hairy Cell Leukemia Patient Seminar Session Understanding Hairy Cell Leukemia – New to HCL: https://www.hairycellleukemia.org/oct-10-2021-webinar

Excerpt: "There are multiple studies showing an increased risk potentially for auto-immune disorders. The most common is just this annoying arthritis, which is usually red and inflamed, and it kind of migrates around the body. It's called palindromic arthritis, we usually treat it with steroids, but that can go on to become a more stable and constant arthritis. And so if inflammatory arthritis does develop, you should probably make an appointment to see a rheumatologist, and the same thing goes for vasculitis. So this is an inflammation of the blood vessels that has been reported in hairy cell leukemia. There's a number of things that can happen long-term that you'll need your hematologist or oncologist helping with consultants to manage."

In addition, you may wish to connect with other HCL-ers like @shing and @agre in this discussion:
– Hairy Cell Leukemia
https://connect.mayoclinic.org/discussion/hairy-cell-leukemia/
Annie, what treatment options are being considered?

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@colleenyoung What a great resource to help give me some perspective. I will definitely need to watch it at least once more. Interesting especially is the autoimmune relationship since in the last 3 years, I've struggled with pustular psoriasis, rosacea, and skin basil cell. Wonder if I'll ever get an answer as to which came first, HCL or everything else.
Thanks so much for sharing this presentation!

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@windyshores

Wow. What a story. Isn't a CBC kind of routine? Did steroids and/or immune suppressants make things worse at all?

When my mother's hemoglobin hit 7 I had to call 911. Are you getting transfusions or infusions for that?

I hope the diagnosis is clear and correct and that you can have effective treatment for the primary problem and all the consequences of this story.

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They do CBCs all the time on TV, but not in Nashville clinics. I don't know which came first the HCL or meds. I am getting lab work twice a week and transfusions as needed.
I hope your mother is in remission now – my goal is to have lots of happy little cells (as in Bob Ross painting happy little trees) coming out of my bone marrow and I pray the same for others.

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