Neutropenia

[UCTD]

I recently had to stop Cellcept as I became severely neutropenic and was admitted to hospital. My neutrophils are up and down, despite Neupogen injections, anybody else had a similar issue? I have a date for Rituximab infusion in 3 weeks but I may not be able to have it. The only meds I am on are plaquenil and prednisone, and I am beginning to flare.

[pinkcat26]

i had the same problem with micophenolate, so i have been changed to azathioprine and so far no problems with it (hope the spellings are right)

[LucyJean]

Hi there, so the question is...is the neutropenia drug induced or part of your disease picture?! Some patients will have neutropenia that is caused by their condition. This is usually more related to a connective tissue disease like Lupus, but if you have a mixed picture with your CTD then it might be relevant to you to. This would mean that when your disease is active then the immune system is targeting it's own neutrophils (white blood cells) and lowering the count. In this case taking an immunosuppressant might help to raise the count in the long term. The difficulty for any Consultant (and ultimately us as patients) is that you have to very brave to keep going when you see further decline in neutrophils which are then drug induced. There is a balance between getting rid of the ones that are causing the problem and eliminating so many white cells that you are immunocompromised and unable to fight off infections, which is clearly a very dangerous state of affairs.

If it is that you just respond dramatically to this immunosuppressant (i.e the Cellcept) then it might be that other immunosuppressants would be better, and potentially not have such a significant effect. You would only know by trialling other things, and they are going to be very concerned about giving you something like Rituximab which they can't control as well as if you were taking daily doses of a drug. The infusions are a bit more all or nothing.

Once you have had a drug which wipes out your white cells though getting your body to produce a new stash can take time and be a bit erratic so it might settle down after you having been off the cellcept for a while.

It is another one of those cases where there is no definitive answer and you are a unique individual who can only use themselves to judge what is going to work best.

Thinking of you. I know this is a difficult and really worrying time for you.

Lucy xxxx

[Hidden in reply to LucyJean]

You got it.

Thank you.

Different consultants seem to look at it differently.

One said, I need to up the drug (and I am under flare), the other, so convinced that it's the toxicity. I think it's former.

[UCTD in reply to LucyJean]

Thanks so much Lucy, certainly a lot to think about 😳

[Hidden in reply to UCTD]

LucyJean

Which hospital do you go to?

You sound like an expert if you are not one already...

[LucyJean in reply to Hidden]

Hi there, I have worked in Rheumatology and pain management for the last 25 years. 6 years of that was working as a Rheumatology Practitioner dealing with bloods and drugs so I have a fair understanding. I have had inflammatory joint problems for the last 26 years and was diagnosed with scleroderma 15 years ago, so I have a fair understanding from a personal and professional perspective. I certainly wouldn't class myself as an expert, although I have plenty of friends who work in Rheumatology who can help me out if I need to know something. I like to understand what is going on in these weird connective tissue diseases so I make it my mission to find out about some of the things that we all have to deal with to help myself and to help others in my situation.

All my best

Lucy xxx

[UCTD in reply to LucyJean]

Thanks Lucy, I have a PICC in situ waiting for my third round of Rituximab, at the end of this month,and had 5/7 of Iloprost infusion at the end of November. The neutropenia started some 10 days after the infusion finished. So everyone is puzzled as to why this happened and I have never experienced it before.

Hopefully my bloods will settle down, and I can continue my maintenance treatment which really helped. Your replies are very much appreciated.😊

[LucyJean in reply to UCTD]

Yes, puzzling! Iloprost shouldn't cause neutropenia. And from the sounds of the timing it is a little while since your last Rituximab, which usually come at approx. 6month intervals, so that shouldn't be part of it. That would point to a disease flare, but it doesn't seem like that neutropenia has been part of your disease picture before? Anything else changed in your life? Any significant life events or other health issues? Lx

[Flouzet]

Hi, yes, I have been on Plaquenil since 1990! So far, no side effects that I know of. The hospital checks my eyes annually, as there is a risk of it effecting my eyesight, but so far so good. I live in France and they are very hot on checking my eyes, whereas when I lived in Britain, the policy was to leave it up to me if I noticed an eyesight problem, although quite what I was supposed to notice I do not know. Wishing you the best of luck in your journey with treatment.