Lower Neutrophils on Benepali

[AnnieJ123]

I understand that neutrophil readings drop when taking benepali. How low can the readings go before you need to stop the medication or reduce frequency of use ? Many thanks .

[Ailsa-NRAS Partner NRAS]

Hello AnnieJ123

I'm Ailsa Bosworth, NRAS National Patient Champion and just wanted to say that you are asking a very medical question here which I think would be best addressed to your nurse specialist as whilst others may have experience of their neutrophil count dropping, as you know RA affects people differently and it's important that if this is happening to you, you get the right medical advice for you. We don't give individual medical advice in this forum but hope to provide peer support and experience which will be helpful. I have not heard that the drug itself is a direct cause of lowering neutrophils which can of course happen with RA due to other causes/complications, but please do ask your team.

[AnnieJ123 in reply to Ailsa-NRAS]

Thank you. Will do.

[Brikel]

Hi

I used to be an advocate for Benepali as it reduced my inflammation and pain to nothing

Until I was admitted to hospital with breathing difficulties

I had an acute form of pneumonia called PCP and was told by the consultant that my immune system was virtually non existent . This she said was the result of Etanercept ( Benepali )

I was taken off it Immediately and so far I haven’t had any further problems.

My rheumatoid Consultant has also told me to stop it until she sees me next month

I hope this helps

[Salamanca21 in reply to Brikel]

Benepali has changed my life and helped me to be mobile. It took a long time to work, but I stuck with it as I have no side effects. I guess everyone is different. Good luck!

[Brikel in reply to Salamanca21]

Yes I was the same a game changer for me. No Pain and able to live a normal life. UNTIL. I was admitted to hospital

I had no idea that it had suppressed my immune system

But as you say everyone is different

I hope it keeps working for you

Kind regards

Brian

[Salamanca21 in reply to Brikel]

Thankyou. Fine so far.

[Salamanca21 in reply to Brikel]

Thanks Brian, it has made me prone to infections, but I just have to be extra careful . Good luck!

Catherine

[AnnieJ123 in reply to Brikel]

I do hope you recover completely from pneumonia and continue to restore immunity. The literature for benepali does not mention neutrophils and acceptable levels. My RA is better on benepali but at what cost? We need full information in order to make informed decisions. Good luck , your reply helped me enormously. Thank you.

[Piggyinthecraftroom]

I’m on Benepali now, having previously had Enbrel (both Etanercept). It has been a total game changer for me. When I was first given it, I was unable to walk or use my hands and arms, was in pain constantly, with swollen joints. Now I can do most things normally. Lots of pain returning now but have used Etanercept since 2015.

[PloddingOn1]

I’m on Benepali and it’s improved my life enormously. I have mild neutropenia and if my neutrophils drop further I get contacted by the RA team. I’ve had to stop other RA medications for this reason but I’ve been ok on Benepali. Everyone is different and reactions to meds do vary but if you’re worried contact your RA nurse to discuss your concerns.

[AnnieJ123 in reply to PloddingOn1]

Thank you. Your reply has been helpful. I am new to biologicals , only been on them for 6 months and my blood test, asked for by my GP showed I have borderline neutropenia. I will contact the rheumatology team . I had not realised that biologicals could lower neutrophil levels and wondered how low these levels go before they are stopped or if it means taking a biological less frequently. I like to understand these things to ensure any problems are identified quickly. Are you concerned about mild neutropenia?

[PloddingOn1]

I’m not overly concerned as my rheumatology team keep a close eye on me. I am aware that I’m more at risk for infections and when I recently had Covid I was treated very quickly with an infusion and was called every day to check my oxygen levels. I had low neutrophils even before I started on Benepali, but I felt quite confident about using it once I had the education appointment and knowing that my bloods would be checked more frequently, they haven’t gone any lower since I started it. Please speak to rheumatology about any concerns and follow their advice.

[AnnieJ123 in reply to PloddingOn1]

Thank you. I am most grateful and appreciate your support. Take care.

[Ben2021]

Hi AnnieJ123

If your white bloods cells (neutrophil readings) are low it may be that you have an infection or high inflammatory levels, either way an email or telephone call to your Rheumatologist team will put you at ease. Also to see your Gp who may put you on antibiotics or go your local hospital A&E if you can’t get an appointment with your GP.

[AnnieJ123 in reply to Ben2021]

Thanks for your support. These levels have not been this low before . My GP has arranged a repeat blood test and we will take it from there . I shall ask for the blood test results to be shared with rheumatology.

[Ben2021 in reply to AnnieJ123]

Hi Annie,

Check with your GP first as he/she would automatically send blood results to your Rheumatologist regarding your symptoms and medication. You can always telephone/email your Rheumatologist re side effects etc and their reply would be for you to have a blood test, so your doing a great job in seeing your GP about this.

Good luck.