I saw my Rheumatologist today and she is a little concerned about my very low white blood cell count, (heading into neutropenia territory), and so she is changing my tocilizumab jabs to fortnightly. She doesn’t think it will make a difference to my inflammation, which is in “normal” mode, and said that in the US, patients only have it fortnightly anyway. Does anyone have any experience with fortnightly jabs, and has this had an impact on inflammation? She continues to encourage me to hasten my pred taper but is understanding of my caution. I am at 5.5/5 mgs alternating daily and will attempt 5mgs daily next week. Apart from my stuffed shoulder for which I am having an MRI in a few weeks, I am feeling good. Any thoughts?
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LemonZest11
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Yes I will Jane, I know that you will be interested. I have had 19 needles so far and doc said that it was probably time to go this way anyway. Fingers crossed that inflammation stays under control ... hoping to hear some encouraging words from others who might know. xx
Well, we are twins! I'm waiting to hear from my Rheumatologist about fortnightly or weekly injections, as my white cell count is low too! I was asked to miss 2 injections and the cell count went up when tested this week. I resumed the drug yesterday and wait for further instructions.
This side-effect is listed as 'common', affecting 1 in 10 people.
I've read on here that several people have had fortnightly doses.
Good to hear that you feel good - long may it continue.
I've been fine on TCZ, apart from falling and breaking my arm, which has now healed and just needs as much exercising as possible. It felt scary to have to omit 2 doses, as I'm on only 3mg pred, so I'm relieved to have had the injection yesterday.
The uncommon side effects "may affect up to 1 in every 100 patients"; Rare side-effects up to 1 in every 1,000 and Very rare, up to 1 in every 10,000.
The figures were minimally different - so not sure why they do it weekly at all to be honest as the doses are the same unless the post clinical trial follow-up has showed differences. You can have it twice as long for the same price/benefit relationship when it is 2-weekly!
Is she aware that ESR/CRP being normal does not mean there is no inflammatory action when tcz is being used?
I thought that if I had to miss some doses during my time on TCZ, it would mean that the end date was pushed on by that number of weeks. Like you, I would have imagined that 52 fortnightly doses could continue for 2 years. However, my Rheumatologist (SM) told me that my year will be up in March 2021, as I started in March 2020 - no matter how many doses I will have had to omit! I don't know if NICE will review the situation and things will change - we'll have to wait and see!
How long do they keep? Keep getting the deliveries and store them ... I was thinking more in other countries - I didn't imagine for a moment the UK would see the logic of that!
Can't stockpile, as the prescription is written by the Rheumatology team and they know just how many doses we should have! The deliveries aren't automatic, but only happen when a prescription is received.
My current pre-filled pens have an expiry date of 11/2021.
I think I read somewhere that the time has been pushed out for another year due to COVID. Not sure if that was in the US or UK. They were worried that people might get sick due to ending tcx and then require hospital beds. In Australia we don’t have a time limit at the moment, it all gets down to your doctor advising the Health Department that you need it.
I think I read it had been extended in the UK to April 2021, but as I started TCZ in March 2020, it won't make much difference to me! Fingers crossed that one year will have been enough, if my white cells behave!
They will behave. I have faith and you are my team leader. Isn’t it coincidental that we seem to be on the same path, you and then me. You broke your arm but I did something crazy to my shoulder and I haven’t even mentioned that, hopefully I won’t need surgery but that is another story, unrelated to our tcx journey. Thinking about you and hoping that all will be OK. xx
You have mentioned before that ESR/CRP being normal is not an indication of no inflammation. Can you please explain that a bit more? My Rheumatologist seemed very pleased with my “normal” levels and really wants me to continue to taper rapidly. I, of course, am cautious. I asked her about the test for adrenal function and she said “no, no”. She’s not concerned about that at all, but you know that I am. With regard to stock-piling tcz, you could do this in Australia because we administer the script, once received, ourselves. Just get it filled and hang on to every second week’s dose. The use by date on my current batch is 11/21. We don’t have an end date for usage either, meaning that you can continue to take it for as long as the doctor believes it is working.
Because of the way tocilizumab/Actemra works, the IL-6 cytokine is not able to create inflammation in the same way and the ESR and CRP levels don't rise - and that doesn't only apply in GCA and PMR.
"The inflammatory markers erythrocyte sedimentation rate (ESR) and C reactive protein (CRP) are widely used in clinical practice to monitor disease activity in patients with GCA.3–5 8–10 However, IL-6 receptor blockade with tocilizumab abrogates the hepatic synthesis of acute-phase reactants and renders CRP and ESR measurement unreliable for the purpose of monitoring disease activity."
describes a case (there have been others) where even 3 years of tcz therapy had not resulted in total remission of the underlying cause of the GCA. And concludes as a key learning point:
"The optimal strategies for monitoring disease progress in GCA remain uncertain, and currently rely on assessing clinical features and measuring inflammatory markers. However, this has become even more challenging with the use of TCZ, which suppresses the acute phase response via IL-6 receptor blockade. CRP and ESR remain low in nearly all TCZ-treated patients who experience disease flares. This underlines the importance of clinical assessment, particularly poignant history-taking and clinical experience in assessing whether GCA activity might be present. ...
... studies have shown that effectively half the patients relapse after TCZ is discontinued and most do so within the first few months. This emphasizes the need for careful clinical observation during this time and immediate resumption of treatment in those with new symptoms. Furthermore, it raises the possibility that patients may need to be on TCZ long term and in certain cases indefinitely, given the very high risk of recurrence once the patient is off the drug."
Thank you. I will print off these studies and give them to my rheumatologist, although she always seems a bit threatened when I mention the information I gain from you and this group. A lot of this makes sense to me because, while my CRP/ESR are so low, I still feel some abnormalities, albeit I do have days of strength and normality and am feeling well generality. You know? Those little things about you that don’t feel quite right? I am so appreciative of your information, thank you for always sharing and helping.
Thanks DadCue, such a bummer about the uveitis. Isn’t it so frustrating, you one thing under control, or think you have, and something else pops up to knock you down again. It is encouraging that the tcz worked for you with regard to tapering pred and PMR. I’m encouraged to learn that fortnightly injections worked and so I will take your story on board and move forward. Take care.
I agree, sometimes I feel like a bit of a guinea pig but I also appreciate the benefits I am feeling at the moment. My Rheumatologist is brilliant, but sometimes a bit gung ho. She urges me to speed up the taper, but I just do what I feel is best ... she seems ok with that.
Your rheumatologist may be wonderful but if she is not aware that actemra voids crp & esr lab results it is something she & you need to know. You can call Genentech medical consultant to have them explain this. It is also in the patient information leaflet section 12.2. I am in USA, so I'm making assumption your TCZ is also from Roche/Genentech pharmaceutical. I don't know if Europeans were ever guinea pigs for Americans. As the world knows, everything has changed here. USA is one big mess. Hope you can find that information. I too am happy to have wonderful physicians. Best wishes to you.
Hi Spanky, I am in Australia, I don’t feel like a guinea pig for the USA, I feel like a bit of a guinea pig for my rheumatologist. I didn’t know about tcx voiding crp/esr results, although PMR Pro has told me that blood tests are not indicative of accurate inflammation while taking tcx. I do get Actemra from Roche so I will check the info leaflet section 12.2. I appreciate your help with this. I know that things are horrible in the US at the moment, stay safe. We are very lucky in Western Australia with no community spread but we are not smug, things can change in a moment, as we discovered on the East Coast. Thanks again.
How interesting. It is very reassuring to hear that your rheumy wanted you to take the taper more slowly, especially at 3mgs. I guess that is where they figure the adrenals could cause a bit of a problem. The last time I got to 4mgs was a year ago and I flared like crazy. It’s taken me this long to get it under control, (with the help of tcx), and so I just don’t want to risk another flare. I will cross my fingers and move forward into the unknown. It really helps to hear stories like yours. I truly hope that the uveitis behaves itself and disappears. Take care DadCue.
Thank you all for your replies. When you’ve been thru as many health problems as I have, you get pretty gun shy. I will just suck it up and do weekly injections and make sure I follow up with bloodwork. My GP that I trust has been thrown from a horse and will be out of commission for most of a year. My Rheumatologist I think has learned more about PMR from me. I just don’t have a lot of confidence in him. Very old school and I don’t think he likes dealing with people. He pretty much let’s me do my own thing. Without this forum, I would be at a loss. Thank you all for caring so much! My first injection is to be administered on September 28. I will now calm down and carry on!😻
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I was thinking more in other countries - I didn't imagine for a moment the UK would see the logic of that!
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