Low wcc

[Cactus7]

Hi all. Methotrexate made my hair fall out so I was put on mycophenolate about 18mths ago. Since then I have had to stop it numerous times because my wcc (in particular, neutrophils) keep dropping. This time I've been off the meds for over 3wks and though the neutrophils have increased to just within range, my over all wcc is still low. I have been told by my consultant to start the mycophenolate again as it is probably my condition and not the meds that is lowering my wcc. Bloods again in 2wks. I haven't started them again as I have a cold at the moment (Covid neg) but feel uncomfortable about doing so. Also with the idea that my immune system could be over active and underavtive at the same time....and that an alternative treatment has not been suggestedJust wondering if any of you have been in this position and what happened next. What other treatments were offered?

Thanks. Cx

[Hidden]

My heartfelt sympathy. I am in a slightly similar boat. My neurophils dropped on benepali. My consultant does not think the benepali has anything to do with it, even though this is the only medication I have change . Nothing in my life style has changed and I haven't suffered from any other complaint . Once neutrophils were back just in range , after stopping the medication, I was told to take the meds again. I am not happy either. I have managed without the strong meds until the last 6 months , and ask myself if taking stronger medication is worth it. I am seriously thinking about it. Good luck. Sorry not to be of any help.

[Cactus7 in reply to Hidden]

It is helpful to know it's not just me. I'm interested in how you have been for the last 6months off your meds.

[Hidden in reply to Cactus7]

Sorry , I was not clear. I have only been on biologicals for 6 months when a blood test showed neutropenia. I stopped taking the biologicals for 2 weeks and the neutrophil results were just in range. Like you, I am fearful. Awaiting another blood test test in 3 months from my GP and 6 months from my RA consultant. Having low neutophils for me is as big a problem as RA wth all the fear of sepsis or bacterial and viral infection. I am a reluctant taker of medication which have serious side effects and when I question benefits/risks . Having a biochemisry degree and an interest in medical research makes me more nervous, not less.

[Cactus7 in reply to Hidden]

Yes! Indeed! May be we just have to do a balancing act to get the most from the meds. I'll pass on any new info I get. In the mean time, good luck. Cx

[medway-lady]

This happened to me I had extreme hair loss so was changed to LEF which was brilliant for many years. Now it’s AZA and Benapali. No problems at all.