Does anyone have experience of neutropenia? Especially due to Sulfasalazine and/or Tocilizmub?

[Erikaknitssocks]

Low neutrophils/ neutropenia on TCZ?

Hi folks, I was wondering if anyone who has experienced this happening can give me some of idea how long it will take to increase? It’s worrying as I’ve had to stop my Sulfasalazine and TCZ (weekly injections) this week. I take both for RA and LVV/GCA . After high dose steroids & steroid infusions last year for the LVV/GCA, I was able to taper completely off steroids, without withdrawal, after the TCZ began. ( When I’d tapered off steroids the previous year the withdrawal was awful) . Of course I don’t want symptoms to flare again but my neutrophils this week are .4 and my rheumatologist said he wants me above 1? Sorry, I never thought to ask him and I don’t want to be off these drugs that have been effective for me, but nor do I want to get ill from something else 🤷‍♀️ Thank you

[zeddy54]

Hello. Sorry to hear about your experiences. Like yourself, I was started on Sulfasalazine for (suspected) RA and had to discontinue after developing neutropenia - which I self diagnosed after developing a high temperature, shivering,etc and then demanded a blood test.My Consultant then wanted me to "give it (Sulfasalazine) another try", which I refused!!

However, to answer your question - my neutropenia quickly resolved, and my white cell count was back to normal within a week (but I hadn't been on the drug long term).

Hope you can find another drug which is effective, but without such drastic side effects.

Good luck

[Dancerina in reply to zeddy54]

My son had neutropenia after his induction doses of Cytoxan which was given at the end of a hospital stay. We were able to get a home lab service that did blood tests just about every day and after a week or so his levels rose to where we didn’t have to take so many extra precautions. Since then, he had single doses every four weeks & he goes to the lab for blood work after weeks 1 & 2. No problems, but they always check.

Maybe the doctor can adjust the dose or the space between doses.

He’s also slowly tapering off the prednisone- this is the fourth time trying over the past four years and each time once he’s below 15 mg he has a flare up. This taper does seem to be going smoother with fewer side effects.