Rheumatoid Arthritis & Actemra: Hello everyone I am new... - NRAS


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Rheumatoid Arthritis & Actemra

paulbasel profile image
13 Replies

Hello everyone

I am new here and hope to benefit from people's experience with Actemra and specifically how it affects blood values.

My son was diagnosed with Adult-Onset Still's Disease (adult form of JRA) 25 years ago. He had JRA when he was 8 years old and within a year with treatment it went into complete remission until he was 25 when the Still's Disease was triggered. Since then he has had 23 surgeries including nine joint replacements, spinal and ankle fusions. Needless to say he has one of the most severe cases that his rheumatologist has ever seen. I don't think there is a drug that you could mentioned that he hasn't taken since his diagnosis.

He has been on Actemra for the last 2.5 years and it has helped him immensely; so much so that he is now down to 5 mg prednisone from a dose of 40 mg or more prior to that. However, recently his wbc count has declined over the last 3 months from 3.8 to 3.5 to 3.1 currently. His rheumy is nervous now and wants to discontinue the drug but nothing else has ever worked this well for him.

We would like to convince the nervous doctor that first of all a wbc count of 3.1, while low, is not at a "danger" level. Secondly we feel that lowering the dosage of Actemra might mitigate or reverse this decline in the wbc count.

I would appreciate knowing if any of you have experienced this problem with Actemra and what you have done about it.

13 Replies
sparklyshazza profile image

His levels are perfect. Is your consultant very junior? down ward trend will be monitored tho> what are his neutrophils?

paulbasel profile image
paulbasel in reply to sparklyshazza

Actually no. He is a board certified older rheumatologist who is very experienced. My son lives in the States and doctors there are so cautious these days for fear of being sued. Frequently, they order unnecessary tests just to cover their backsides. I'm not sure what his neutrophils are; I'll ask him.

sparklyshazza profile image
sparklyshazza in reply to paulbasel

no reason to stop toc unless he is not responding/side effects. His neuts can drop to 1 on this as this is accounted for with this drug. Lipids can be affected. But can be treated whilst on the meds.

paulbasel profile image
paulbasel in reply to sparklyshazza

I'm not sure what you mean by " . . . this is accounted for with this drug." Isn't a neutrophil count of 1.0 serious?

dwsurquhart profile image

I started Actemra (tocilizumab). 600mg infusion per month and am now down to 280mg. My wbc, rbc, and all other blood counts have fluctuated and my rheumatologist monitors them. I have only had one month where I waited 2 extra weeks for numbers to come back normal.

I would say keep him on it, just have the dose lowered.

My 2 cents


paulbasel profile image
paulbasel in reply to dwsurquhart

Many thanks. The plan is to lower the dosage if we can convince the doctor to keep him on the drug.

Metal-legs profile image

Hi Paul

Gosh what a journey you and your son have endured, thank goodness Actemra is available. I have been on Actemra injections for over four years, it's been a lifesaver for me too. My white count has fluctuated, 3.1 is just below the normal level but not dangerous, it will just make your son more susceptible to infections. Is he on self injection or infusion?

In my experience if my wc levels go below 3, I feel really run down so I miss an injection for a week and also take lots of vitamin C. If he is on monthly infusion would it be an option to delay for a week or so to give his white count levels time to recover?

Certainly try and find a way to keep him on this drug, I wish you and your son the very best.

paulbasel profile image
paulbasel in reply to Metal-legs

Many thanks for your response and kind thoughts. He is on a monthly dose and I'll mention your suggestion to him. Perhaps a combination of a lower dose and delaying for some days or a week might help. I'll post the "solution" after he has been on the new regiment for a while. Again, thanks.

Metal-legs profile image
Metal-legs in reply to paulbasel

Yes a combination of a lower dose and/or delaying infusion would be the best option to put forward to the consultant. There must be a way forward so your son can stay on this drug, that is helping him so much. Best of luck and keep us all updated.

Agoodlife profile image

Actemera is a med to consider carefully. If some forum members have had positive results and no problems, certainly does not raise the risks and problems there has been with this med. I would do some research on recent advice through studies, these may give more dependable advice, as will ,I believe your doctor. Good luck.


paulbasel profile image
paulbasel in reply to Agoodlife

I fully understand and appreciate your caution in using this drug. The description of Actemra as being a drug of "last resort" for moderate to severe RA clearly indicates that there are risks that one must consider. My son and his doctor are informed of these risks but none have occurred in the 2 1/2 years he has been taking the drug until this latest dip in his wbc count.

My purpose in asking current users their experience with lower wbc counts and how they have adjusted dosages and delaying infusions is because the doctor wants to stop the drug and look for alternatives. He has been on all of the alternatives up to the date he started Actemra and his life was filled with unimaginable pain even with high doses of prednisone in combination with other biologics that did not work. He believes that staying on the drug is worth the risks involved.

This drug has been available since 2010 and yet it took this physician 7 1/2 years to even try it for the worst case of RA he has ever seen and all the while knowing the failure of other medications he prescribed. I have urged my son in the past to seek out another rheumatologist but he was reluctant to start over after so many years with him. Doctors do not always give the best advice or treatment.

Agoodlife profile image
Agoodlife in reply to paulbasel

Dear pb, Believe me I do understand your predicament😰The RA meds have such a variable effect on us depending on the nature of our disease as well as on how well we as individuals cope with them. Numerous pas go through an huge arsenal of meds without getting help whereas others have much better luck. Unfortunately doctors are still guessing as well as pas. Usually doctors do have more info and experience ( but not always as you say). The pas that however get help or shouldn’t try a specific med have to try to choose on the basis of all possible knowledge what to do and what risks to take.😓

paulbasel profile image

I promised an update on my son. His rheumy has agreed to try a lower dose rather than taking him off of Actemra. His new regimen will be to decrease from 8 mg/kg to 6 mg/kg every 6 weeks instead of 4. Here's hoping that works.

His labs from yesterday showed that his wbc count went back up from 3.1 to 3.5. I wonder why the increase when he is still on the 8 mg dose and there are no other changes in his life style?

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