Recently I've had very bad fatigue, hives, joint pain/swelling, and high white cell counts indicative of inflammation. Have SLL and been on BTKs for 2.5 years but my hemo doesn't think drug side effects or disease progression are causing these symptoms.
Rather, she said they could indicated a separate autoimmune illness (runs in my family). But couldn't these things have something to do with the fact I have malignant small b cells and take a powerful drug (Calquence) to control them? Confused. 😔
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Amberesque
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It's natural to think that something like a cancer diagnosis (in this case CLL/SLL) is the cause of any new health problem, particularly when we are in treatment. Unfortunately, we are just as much at risk (albeit, more so for some conditions) when we have CLL/SLL as our peers. Also, unfortunately, just growing older increases our risk of developing new health problems. That said, some of us have reported joint pain while having BTKi treatment.
You mentioned auto-immune diseases in your title which you note runs in your family, so it makes sense to consider that possibility. There is indeed an increased risk of these when we have CLL/SLL, but the increased risk is for blood related auto-immune conditions, where our CLL can cause the development of B cells that attack our platelets (ITP), red blood cells (AIHA) and less often our neutrophils. Keep in mind that while you are being treated with Calquence/acalabrutinib, that BTKi also eliminates healthy B cells, so autoimmune conditions should be less likely to occur for the same reason that you are less likely to respond to vaccinations.
What are the "high white cell counts indicative of inflammation" that you have?
My last blood tests, which coincided with hives, acute joint pain/swelling and extreme fatigue, showed high (out of range) monocytes, eosinophils and basophils. Neutrophils were higher than usual but just in range, and lymphocytes were normal.
My husband is on W/W past 5 years and is constantly tired and suffers from Hives and finds it quite distressing. He takes Antihistimes as prescribed by the Dermatologist and they come and go, he was told that it wasn't to do with the CLL but I think it is so reading your post is most helpful. He is 84 next year and doing well but the Hives certainly get him down with the constant itching.
I dealt with hives and visited my dermatologist several times. I am 80 and have had CLL for 10 years and treatment for 8. The best help I received came when I saw an allergist. To my surprise, I had developed a strong allergic reaction to the preservative found in shampoo, conditioner, laundry detergent. This preservative has been banned in Europe but not US. It might be worthwhile to see an allergist.
Thank you for your reply, I have also changed shampoo and detergents, just in case, in fact anything he is in contact with that may cause the reaction, my belief is that it is something in the garden as he is an avid gardener and I have just convinced him to wear gloves!!! My worst fear was that he could be allergic to our little dog, 12 years old and had her since she was a puppy, a Chihuahua, so I make sure she is regularly groomed to remove any dander etc., but suffice to say she is going nowhere lol. I will make enquiries re an allergist, thank you for the suggestion.
have you been checked for rare blood diseases? For example, I have cryoglobulinemia and one of the main symptoms is hives and joint pain. I found out that CLL/SLL is thecause of this rare blood disease. It is a specialized blood test that they do.
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