erythema nodosum after recast infusion cll num... - CLL Support

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erythema nodosum after recast infusion cll numbers increased

elm1 profile image
elm1
4 Replies

I have an unusual situation. i had a recast infusion for osteoporosis. I developed a couple of bumps on my legs that were diagnosed as erythema nodosum. I'm taking prednisone for inflammation. The rheumatologist is clueless as to why I got it. That will go away but i had a CBC and my WBC and lymphocytes were higher than usual. I'm wondering if it can be from the erythema nodes. I have a call into my hematologist but was wondering if anyone has an opinion. My WBC went from around 37 to 43. Lymphocytes from 30 to 35. I get freaked over everything but actually feel great.

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SofiaDeo profile image
SofiaDeo

The nodes can occur in patients with Non Hodkins Lymphomas(NHL). So it seems you are one of the NHL patients getting these (CLL is a type of NHL). Since the nodes origin is inflammatory, I think it's possible that lymphs etc. get stimulated. Infusions like Reclast are foreign molecules that cause pain in various tissues, so it's reasonable that people may get an inflammatory response to it. Cell changes that induce even mild pain may have your body saying "pain=something wrong in cell=better send something to deal with whatever is changing the cell". Especially since fever is also a known side effect, there's definately some sort of inflammatory stimulus possible. Your rheumatologist should be informed your CLL is a type of Non Hodgkins' Lymphoma. They do tend to resolve, so, unless they are super painful you should hopefully be past this soon. Must be scary, though! I would be freaked out.

elm1 profile image
elm1 in reply to SofiaDeo

Thanks for responding. I'm on prednisone and these small bumps are practically gone. My Rheumatologist knows I have cll and has been researching this because it's not a usual side effect of recast. My son is in medical school and he found one (lol) person that had these bumps after recast. What I was wondering if that the reason my WBC and lymphocytes are higher than usual. I have an appointment with the hematologist Monday. Now I have to figure out if I want to get recast in a year. I was getting prolia but if you stop it you lose all your progress. With recast you get it once a year for three years and then its done. Decisions! Hope you're well and I appreciate that you too the time to respond

Phil4-13 profile image
Phil4-13 in reply to elm1

I had one Reclast infusion. Since I was told because of my age and bone test result, I was at "risk" of developing osteoporosis, I had agreed to Reclast. My body's reaction was not good. For one full week, severe weakness in my left leg (needed a cane-never needed a cane before) and for nearly 9 months, ongoing passing gas and diarrhea. My doctor said those side effects were rare and she was not alarmed. I never had another Reclast infusion and am not on any bone medicine. I stay active(now 74 yrs young) and am very wary of most medicines. Now, that I have been diagnosed with CLL(4 years still W&W) I am VERY, VERY wary of most medicines. Last WBC was 85. Down from 98 a year before. Up and down, up and down! I just keep a goal of making better healthy choices in food and fun activities. 🙂 Sandra

SofiaDeo profile image
SofiaDeo in reply to elm1

Correct, but your rheumatologist may not realize that CLL is a NHL, and since erythema nodosum is associated with NHL's there is an explaination for it. That was the point I was trying to make. Not so much a SE of Reclast, but, as a NHL patient this disease state itself is the trigger for the erythema nodosum in these patients. Other drugs may also be a trigger for you, occasionally. Because of the CLL/NHL, not that the drug itself is associated with this SE. So having an altered immunity from the NHL, is having our immune system possibly react to drugs like Reclast on occasion.

ncbi.nlm.nih.gov/books/NBK4...

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