Low white cells & neutrophils

[Gilliancheche]

I was diagnosed almost 18 months ago. Was given sulphasalazine which had no effect, moved to MTX , butmy white cells which are always low, dropped further so all meds stopped. Back on MTX injections, low dose but white cells dropping again. Says I may have neutropenia. Meanwhile my arthritis just gets worse, at diagnosis mostly wrists and fingers, now also shoulders, hip, knees and feet . Anyone had similar experiences, would love to hear.

[oldtimer]

I didn't have just neutropenia, but my bone marrow did stop working for a while due to the Rheumatoid Disease. I needed to go on steroids for a while to get that under control, then trials of treatment for suppressing the immune system. Hope that helps.

If you look to the other side of the page, you will find some related posts. You can also put 'neutropenia' into the search box to find previous posts.

[Hidden]

Hi Gillian sorry youre having difficulties. I've had low white cell count whilst on treatment but not prior to it. I hope your rheumatologist can get to the bottom of it all for you. And you can get on a drug you tolerate 🤞

[Hessie5]

Hi - your story very similar to mine with regards to my WBC and deficient neutrophils. I saw a haematologist due to this. I was diagnosed November 2016 and have trialled seven biologics some good, but my Neutrophils were far too low with some readings at 0.3 I recall. I am seropositive - severe RA with high levels of inflammation.

I am now on a biologic which is better than the ones prior, but still, my WBC is not ideal. My rheumatologist put it down to just my genetic makeup. He monitors my blood monthly now and would call if concerned.

All fine so far, although in a dreadful flare today with my left foot, now I haven’t had a flare for a good eight months so working through this wave and praying my meds are not losing their efficacy.

Do remain hopeful as you shall find that drug that works for you. All the best - Hessie 😌

[Gilliancheche]

Thanks. My rheumatologist has said autoimmune induced neutropenia. I have been on 2 weekly blood tests at hospital for the last 8 months. Obviously in current situation not a good thing! It is all so frustrating and my last appointment was due in March and delayed until who knows when. All I get is calls to nurses who try to speak with the consultant and adjust treatment while my flare ups seem to get worse. I have looked at some previous posts to understand the situation better.

[StormySeas]

Me too, I have autoimmune neutropenia.

Mine has responded well to a change of treatment to RTX and a reduction of MTX.

Historically my WBC and Neutrophils have always been low, bordering very low, with the GP practice periodically saying to stop MTX - although rheumatology usually said to continue, as my levels were normally very low anyway. SSZ was stopped due to neutropenia.

Things are better now on RTX and low dose MTX and currently WBC and neutrophils are both very good. Last RTX was 9 months ago though so this might have something to do with it.

Who is treating you? I hope it's the rheumatology dept rather than your GP

[Gilliancheche in reply to StormySeas]

I stopped SSZ and now low dose MTX. What is RTX? Am treated by rheumatologist my GP called me about shielding and said maybe you should have a blood test as you have been taking MTX for a few months 😂. I told him 2 weekly done at hospital - good job I wasn't waiting for him.

[StormySeas in reply to Gilliancheche]

RTX is a biologic, an different sort of treatment via an infusion you have as a day case at the hospital. You tend to only progress to biologics after other treatment options have been exhausted, so I imagine you might try some other DMARDS next. Sounds like your rheumatology dept is on top of things though which is good.

Best thing is to keep in touch with them and let them know how you’re feeling whilst treatment has been reduced.

It can take a long time for some people’s treatment to work out, hope it’s not long before you begin to get better X