WBC keeps getting lower, anyone else on ... - My MSAA Community

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WBC keeps getting lower, anyone else on Avonex have this happen?

Hjr4
Hjr4

I’ve been on Avonex for 9 years now. The last two lab tests my WBC has been low and the last one was the lowest yet at 3.1. The low end of normal for this lab is 4.0.

I also have scleroderma and Sjögrens.

Has this happened to anyone else on Avonex and is your doctor not concerned? Has anyone seen a hematologist? Had testing and if so what kind of tests?

Thanks for any info you can offer.

9 Replies
oldestnewest

I was on Avonex a dozen years ago and no side effects. It wasn’t working for me so after a year I switched. Good luck and hope it works out for you 👍🙏. Ken 🐾🐾

Hjr4
Hjr4
in reply to Kenu

Thanks hope you are doing well

I was on Avonex for several years and my white blood count was below normal and my neurologist wasn't concerned, even though I was.

Hjr4
Hjr4
in reply to SueAB

My neurologist doesn’t seem to be concerned but like you I am as well.

Speak to your doctor and express your concerns. Blessings Jimeka 🦋

My neurologist does not seem to be concerned no course of action is being taken on her part

Avonex. Can cause myelosuppression (suppresses the bone marrow function) causing decreased WBCs anemia or decreased platelets. Are you on other meds for your sjorgens or scleroderma? While 3.1 is not horrible, a hematology consult might be good. What does your doc think?

Hjr4
Hjr4
in reply to erash

Rheumatologist is giving me a referral to hematologist, neurologist isn’t concerned. But I still don’t know why after 9 years all of a sudden it’s dropping more. That’s what is concerning for me. I’m also sweating a lot which is new for me and I usually don’t sweat even with heavy exercise, but now, I’m dripping when exercising and my core body temperature is out of whack. I can have 30 mins of awful sweating and being hot just sitting. I’m done with hot flashes 2 years ago and they never lasted more than 4 mins.

My TSH test came back normal, but in the lowest normal range.

erash
erash
in reply to Hjr4

MS affects the ANS (autonomic nervous system) and can affect sweating as well as things like heart rate and temperature regulation. Of course MS isn’t the cause of every symptom (although it often feels like it) and I hope they address that too for you. 🌈

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