Neutropenia whilst on Tocilizumab

[Magsters123]

Hi. Just wondering if anyone has had a similar experience. Diagnosed with PMR and GCA Nov. 2021.

For last 2 months I have been on weekly Tocilizumab injections; this followed a further flare up in December 2023 when the entire aorta was inflamed (I have never had cranial symptoms). I was certainly shocked by this development.

Last 2 monthly blood tests showed pleasing normal CRP and ESR results, but Neutrophils were 0.9 and dropping. Last blood test was on Friday and Consultant phoned me immediately to take me off Tocilizumab and Methotrexate and increase Prednisolone from 9mg to 15mg.

Consultant warned me to present at A&E if I should develop a fever or become unwell (Sepsis?).

I am to repeat blood test next week and Consultant will review. Ironically I feel as fit as ever!!!

Is this just all part of the PMR / GCA rollercoaster or am I just an odd case?!!!

I would appreciate any comments.

Thank you 🤗.

[PMRpro Ambassador]

Do I understand you are on both tocilizumab AND methotrexate? Each of them can result in neutropenia - so if they use both, it is even more likely to happen. When neutropenia was associated with tocilizumab infusion it improved with a 10-20% lower dose.

[Magsters123 in reply to PMRpro]

Hi PMR Pro. Thank you for your reply. I have been on Methotrexate for a couple of years. The Neurtropenia does appear directly related to the Tocilizumab so let's hope the Consultant will tweak my dose after next week's blood test results. I would be sad to come off Tocilizumab completely as I was certainly doing very well re. inflammation markers.Thanks again 🌞

[PMRpro Ambassador in reply to Magsters123]

If you didn't have any problems with MTX alone, it is most likely the combination being simply too much. If I had to give up one, it would be the MTX!!!

[Paulagcl]

I take Kevzara and had one very low neutrophil count so my dr stopped the Kevzara temporarily and the next count was back up. Maybe a lab error, maybe not. Sounds like your dr is following up with blood tests, so don't worry. Sounds like it's being handled.

[Nothing-special]

following

[Sharitone]

Since starting on TCZ 2.5 years ago, I have had a tendency to neutropaenia. When the neutrophil count got to 0.8 I was told to stop for a few weeks until it came back up, which it did quite quickly. For the last 6 months, I have had neutropaenia again, I think it's about 1.7, but nobody minds so long as it doesn't go below 1.0. I think the potential problem is any infection, as you won't have the wherewithal to fight it.

Did the MTX actually do anything for you? because if not....