Actemra and low WBC(1.9) and low Immunoglobulin levels. Asking for your thoughts.

[Elephants2019]

I had blood test recently showing low levels of WBC, ALP, and all the globulins low. Called rheumatologist to see if I should cease taking Actemra as I had read Actemtra can cause neutropenia. Her nurse called yesterday to say doctor did not think low levels from Actemra/ prednisone, and follow up with GP. Against her advice, I skipped this weeks dose and wondering if I should try stopping completely. Currently down to 3.5 mg prednisone, and thought would see how slow taper goes without Actemra. Anyone out there have anything similar happen to them?

[Blearyeyed]

Personally, I wouldn't just stop the treatment before taking the Rheumy advice to follow up with the GP. I would ring them and request an urgent phone consultation to discuss this explaining that you need advice about the Actemra and feel you need to stop it.

You may benefit from continuing while the GP gets chance to do further face to face checks or blood tests to rule out other causes which would mean you may or may not need to suspend using Actemra.

In the meantime , can you think of any other incidents or issues in the last month that may have effected these results , not just the medication?

Things like an infection or injury or other symptoms you haven't had before, feeling generally more run down , additional Stress or activity , or changes in your diet or digestion. As a combination of these alongside having a chronic condition could be effecting the results , not just the Actemra alone.

Repeating the blood tests would also be useful in case there had been a blip and they had improved, although you would need to take your Actemra dose to be able to accurately compare like to like and prove whether the drug was responsible. Then you could start a tapering schedule with your GPs knowledge and help if that is your choice.

Take care , Bee

[Elephants2019 in reply to Blearyeyed]

thank you for your thoughts…makes sense. Nothing has changed in my life regarding diet, exercise, sleep, etc. other than tapering from 4.0 to 3.5 mg prednisone. ALP has been low for about a year now, but GP and Rheumatologist Both tell me only reason to worry was if it ALP high. Just worry seeing WBC count so low and if it is being caused from Actemra. Think will go to biweekly dosage until can get further medical advice. Want to continue to keep GCA lying low and tapering off prednisone. Many thanks for advice!

[Blearyeyed in reply to Elephants2019]

Did you have other recent tests done like your Iron / Ferritin panel , Folates and B12?It may be worth requesting them if you didn't. Even with a good diet and supplements these nutrients can become low or deficient, and if they are low for some time they can cause low white blood cell counts and various changes in your blood cells and liver and kidney function results.

Use of both steroids , biologics and other drugs , especially PPI can reduce how much of our medications and essential nutrients we absorb through digestion.

It's probably a good thing to rule out before making your final choices.

If you get these tested , request a copy of the results even if they say " normal" , as they could still be low or near the level that could require action , like supplements and starting preventative measures now could be the final piece in the jigsaw for turning those blood and liver results around.

[Elephants2019 in reply to Blearyeyed]

wonderful advice! Once I get an appt with GP, now can at least have “action plan”, and know what to ask for from advice received from forum.

[PMRpro Ambassador]

A more usual approach would be to first space the Actemra injections to 2 weekly instead of weekly - that gives the WBCs a chance to recover and is usually enough to avoid the risk of needing to raise the dose of pred again which is likely to happen without the effect of the Actemra. In the trials the effect was almost as good as weekly injections. Then maybe 3-weekly before dropping the pred, You have to remember the role the Actemra is playing in getting the pred dose lower.

If they don't think it is the Actemra, despite them being known effects, what do they think it is? And how low were the results?

[Elephants2019 in reply to PMRpro]

Thank you PMR pro! Makes sense to go every two weeks and then 3 weekly in a month or so. I only spoke to nurse, don’t think my concern was really addressed by doctor, other than she did not think that Actemra was why my wbc count(1.9) was low., but did not take time to try and find out why and referred me to GP.

[PMRpro Ambassador in reply to Elephants2019]

I think she is probably wrong - but hey ho!

[Elephants2019 in reply to PMRpro]

😊-I agree with you I too think she is wrong. I have learned I have to ask questions, or things can get worse quickly, like GCA and developing a TAA.

[Strelitzia]

Hi there, I am on weekly injections of Actemra and down to daily 4 mg of prednisone. My new rheumatologist thinks this combination is fine for the next 18 months. My last rheumatologist ( now retired ) said get off the prednisone as soon as I can. I am reducing a quarter mg a week. Everyone is different, and even the advice from rheumatologists can differ. My goal is to stay pain free. Now I have to look up “neutropenia”, that’s a new one! Always something! Good luck!!

[Elephants2019 in reply to Strelitzia]

thank you…always interesting to read what advice others receive from their Rheumatologist.

[Microbe1943]

You are right to be concerned. Is ther an immunologist in your area that you could connect with asap. OR call the drug company. There are people u can ask. Say you want to report a drug reaction. Start like that. Also a hematologist maybe befor immunologist. Yiu need to know what’s source of neutopenenia. Please let us know how u decide to proceed!!!

[Elephants2019 in reply to Microbe1943]

Great advice, thank you. Will try calling Genetech, see what they say.

[Sharitone]

That's exactly what happened to me in December, on 1.5mg. Neutrophils were 0.8, when 'normal' starts at 2. I was told to stop Actemra injections for a couple of weeks, then have another blood test - a bad time to get Covid!! I had an blood test for the Covid, which showed neutrophils back up to 1.5. Another week after this (after missing 2 injections) the neutrophils were recovered. They said they would be satisfied with 1.7, if that's any help.

If you want to compare, my WBC was 2.7 (normal range 4-11)

I don't know what ALP is, but my ALT is also testing well above normal range, but they are not worried about that. Potassium also dipped, but has been sorted out, several times.

It seems to me your rheumatologist should be giving an opinion on this, not just his nurse, as if the neuropenia is significant, it really does matter.

[PMRpro Ambassador in reply to Sharitone]

They certainly are - and too low a level can make you VERY ill.

[Sharitone in reply to Sharitone]

I forgot to add that when the neutrophil level was low, I was told that if I got any cold, etc, that developed at all, or caused a fever, then I should get immediate medical help.

[Elephants2019 in reply to Sharitone]

thank you for all your information, good to know your WBC increased after missing a few weekly injection, that is actually a relief! And they were okay with 1.7. Will give Genetech a call, have appt with GP February 8, and hopefully by going to bi-weekly injections, problem will resolve itself. Just was worried with low level of WBC, as makes one feel a bit vulnerable, when trying to live a normal as possible life….and interesting to know you were advised if caught cold, etc, to seek medical advice.

[Sharitone in reply to Elephants2019]

You may well find that when it is resolved, you can go back to weekly injections. I hope so!

[PMRpro Ambassador in reply to Elephants2019]

Similar effects can happen with methotrexate too. It is an inherent problem with immunosuppressants.