Started Tocilizumab Infusion but having to stop

[tazman3]

I had my first Tox infusion last month and had a blood test on Monday in prep for infusion no 2. Rheumy nurse rang yesterday to say my white blood count is too low (again) and I can't have another infusion until my white cells increase. I am so disappointed as I had really hoped that this drug would finally be 'the one'.

I don't believe this result is due to Tocilizumab as this happened way before I started it. I have tried other meds over the past couple of years and nothing has touched my RA. My joints are burning and I am exhausted all the time. I recently lost my beloved Dad and so grief is not helping. I live with chronic anxiety and depression and I know that losing Dad has really not helped. The nurse did say that stress can lower WBC count but I take meds for all that too.

What can I do to increase my count quickly so that I can get going again with this drug? I'm desperate for some relief and we all know that RA drugs are not fast acting.

Hoping for some ideas.

[Tracy-NRAS]

Do give our helpline a call on 0800 298 7650 and have a chat with them. Also keep an eye out for our new Wellbeing Memberships launching soon which will give you access to an exploratory call with our counsellor Sue, she actually started as a grief counsellor and it really helped her when she too lost her father. We are trying to introduce benefits to help Members as grief and stress don't help, also diet so we will have a Nutritional Therapist Lulu offering a Nutritional Discovery call as part of the package too, so keep an eye on our website in a couple of weeks for launch. Take care.

[Neonkittie17]

Sorry to hear of your Dad, and the stress and sadness is natural and inevitable. I think it’s a waiting game till the white cells become more abundant again. Hopefully a month could show an improvement. 🙏🏻 You can help by getting Vitamin C from natural fruits and vegetables which help a lot it is said to produce and maintain white cells. (Lemons .. lemon water/oranges /peas/kale/blackcurrants to name a few high C fruits and veg.) It’s easy to reach for the less nutritious snacks when we are stressed and want a sugar fix.

Lean protein .. fish and poultry, fortified cereal, nuts and beans are all sources of zinc which is vital for T cell production. I’d not try overdo it or anything by taking extra vitamin tablets in addition to anything that’s usual for you, as an excess isn’t necessarily the right answer in trying to hurry the white cells along, and always talk to your rheumy/nurse re supplements. (Also if you’ve had a viral infection that can disrupt the work of the bone marrow making white cells.) Hope you're soon back on track with your blood tests and can resume your biologic and be kind to yourself after an awful time. 💗

[Bizzie]

Oh Tazman3 I’m so sorry to hear you’re suffering and my condolences on the loss of your Dad. Like you I’ve had white blood cell problems and been disappointed by medication I had a lot of faith in.

I do hope you can have your infusion very soon and be on the road to better health.

My thoughts are with you.

Best wishes

[tazman3 in reply to Bizzie]

Thank you for the replies and best wishes. I do try to be positive, but my dad understood my mental health issues as he suffered with it for most of his life. It seemed to run in his side of the family and my mother and brother have been less than sympathetic. I have good friends and 4 gorgeous grandchildren, but now Dad has gone I feel like part of me is missing. I know that will not help with my physical problems, but the mind is usually the winner in the battle of mind over body.

I stopped taking methotrexate (Rheumy approved) and I did feel more awake and my skin improved. I was told it is not worth taking a drug that is not helping my RA and I was happy to go along with that. However, I did stop taking Folic Acid at the same time and wonder if that could be contributing to my current problem. Should I start taking it again?

[Bizzie]

I think treatment of RA can be very complex for some people and I would strongly advise, that with your cell count low, you let your rheumatoid nurse or consultant know you’ve stopped the folic acid and ask whether you should restart it.

[Florida100]

I’m so sorry to hear about the loss of your dear Dad as that’s not easy for you. I’m on Tocilizumab injections once a week, so can’t comment on the infusion, but sometimes my neutrophils can be on the low side and I think it could be to do with the injections. The injections have worked well for me and I really hope you can get restarted on your infusions soon. Take care!