I certainly can't say that I have any adverse effects with Actemra which I have been on for over 2 years now. That isn't saying that it doesn't have any - others do say they have some.
However, Actemra on works 100% for about half of patients to get off pred entirely. There are at least 3 different underlying causes of the inflammation experienced in GCA and Actemra only works for one of them, the one involving an inflammatory substance called IL-6. If your GCA involves the others - Actemra doesn't affect them and they continue to be effective in causing inflammation and you are likely to require some pred to manage that. Equally, if the IL-6 part is the majority of your GCA, you may need only a VERY small amount of pred - but you will need some to keep the symptoms at bay once the inflammation builds up again.
Are these symptoms similar to the GCA symptoms you had before?
Hi!Yes, the IL6 is the problem hence the offer of Actemra.
Previously the pain was mostly in my jaws ie the claudification and my temples.
To be honest though I didn't have much head pain but shoulder and neck area was a problem.
As I am in Scotland I can only take the Actemra until next March which will be one year of the weekly doses.
I actually self diagnosed my GCA as my GP missed it.
I bought a book from Amazon about PMR and GCA and subsequently called Rheumatology at our local hospital.Got an appointment the next day and biopsy 1 week later.
Thank you for your reply!
It is so good to be able to discuss with people who understand x
I am told by someone in PMRGCAScotland that the year for Actemra isn't enforced as rigidly in Scotland as in England. It depends on the rheumy considering you would benefit.
I think you are misunderstanding me - I am suggesting it is possible that while the bulk of your inflammation was due to IL-6, there is a small amount due to the other mechanisms and you may still need perhaps 1 or 2mg of pred.
Hi Thank you and I understood 😊.
My consultant is excellent and very supportive but they have such a demanding profession that I don't want to take up his time.
I have been told by him that 1 year has had the best results and at that a good chance of no recurrence.
Time will tell but it is encouraging to know that a small dosage of steroid might make a lot of difference.
Obviously isn't au fait with the work done in the UK to support the request for longer. However - would be interested to see his references for his view. Which I don't agree with!!
Cannot comment on Actemra as never been on it, but as PMRpro has explained isn’t a magic bullet for everyone… and if your headaches are causing you a problem I certainly wouldn’t rule out the fact that your GCA is not under control…
Hi DL
Thank you.
I have never had my adrenals checked so that's another question I am going to ask my consultant about in a few weeks when I see him.
I find it hard to get my head round the fact that my bloods are normal and yet they cannot tell if my GCA has spiked again as the Actemra lowers the immune system so much it wouldn't show up.
The effect Prednisolone had on my mental health was bad.
I will let you and PMR Pro know how I get on after my next visit to RM.
Your bloods are normal because of the way Actemra works - it preferentially occupies the receptors that the IL-6 needs to attach to to be able to create the inflammation that is the problem and as a result stops the development of what is called the acute phase reaction which is what raises the ESR and CRP and so them being normal is meaningless in this context. As a result, the IL-6 bounces off the cells and is excreted from the body without achieving anything. The autoimmune part of the disorder that creates the IL-6 may still be active, the Actemra doesn't directly affect that, it just prevents the inflammation happening by affecting on eparticular pathway.
Its effect on the immune system is different - any immunosuppression is due to side effects leading to lowered white cells but that isn't how it works on GCA and if they were to use other markers they could see if it is still active.
That's a very basic highly simplified version. A doctor might laugh at it but a lot of them don't appear to "get" how it works at all - obviously not having read the study documentation.
Hi PMRproRe "The autoimmune part of the disorder that creates the IL-6 may still be active, the Actemra doesn't directly affect that, it just prevents the inflammation happening by affecting on eparticular pathway."
What is the point of taking Actemra then if it doesn't directly affect the IL-6?
How and when does the body go back to normal and stop creating it?
I read that Tocilizumab (Actemra) was given to patients with Covid.
I explained that - the Actemra attaches to the receptors that the IL-6 needs to occupy to exert its effect so there is no room for the IL-6 and it is just flushed out of the system.
The body stops producing IL-6 when the autoimmune disorder burns out and goes into remission - but there is no way of knowing how long that will take. It is anything from a couple of years, very rarely it may be less, and up to 4 or 5 years is common.
TCZ was given to Covid patients to avert the effects what was called a cytokine storm when the virus resulted in the production of vast amounts of IL-6 which otherwise would have overwhelmed the body.
Thank you...very interesting . These cytokines have a lot to answer for..🤔🤔🤔
I had hoped for the GCA to be in remission by the end of my Actemra treatment next March.
I had hoped for the GCA to be in remission by the end of my Actemra treatment next March.
Unfortunately it doesn’t work like that….GCA like PMR is self limiting… but no-one can tell you how long that may take… and neither read the manuals nor count how many doses of medication you take. It has its own agenda.. and all anyone can do is manage it with appropriate medicine. End of 😊
The problem with taking Actemra in the UK is that it was only trialed for a one year period, [ and is only authorised for that period] - so that’s all the evidence there is to go on.
There are many on this forum who took it for year [although during Covid it was extended for another 6 months] -and have found that their GCA is still very much there after that period.
The charity, along with a number of Rheumies are trying to get the one year period extended - you might like to read this post which has a link to the study on the subject -
The link below gives the Monitoring & Safety instructions from Genentech, the manufacturers of Actemra (eculizumab). Headache is listed under Common Side Effects. Lower down it says "Tell your healthcare provider right away if you have any of the following symptoms: feeling tired (fatigue)...", as this can be early warning of liver problems. It could be something else entirely, of course, but better safe than sorry.
Note the very first sentence: "Your healthcare professional will take blood tests every 4 to 8 weeks for the first 6 months following the start of treatment and then every 3 months after that."
Early days for you if only diagnosed Dec '23. I am GCA/PMR afflicted and I was on Tocilizimab (TCZ) for 18mos. Had stopped the Pred after 6mos on TCZ, and noticed that the CRP etc started rising again. While on TCZ , however, did notice some new lesions or tags on my skin, so decided to stop the drug. Did return to Prednisone, 3mg and this has been sustaining my energy. When diagnosed, I was started on 100mg Pred which was quite unbearable, but by reducing slowly, the side affects diminished. My skin still bruises easily but the headaches etc have disappeared. I am now into my 5th year and hoping that the brutal PMR wears itself out soon. Fingers X'd and good luck on your journey.
The person who posted has left the site, as they are now "Hidden"! They won't get any replies, which is a shame, as I was going to reply to say I had been on TCZ for 2 years during the height of the Covid pandemic and it allowed me to reach zero pred. Unfortunately, 6 months later, the inflammation resurfaced and I've been back on pred for more than 2 years!
Hi Rugger Has your consultant not reapplied for TCZ . Like you I was diagnosed in 2019 extended tcz through the pandemic. Only did a few months off if and symptoms back. Had ct pet scan to confirm and back on tcz ever since. My consultant says he can’t keep me well without it and doesn’t appear to have any problems in continuing treatment. Just had my first delivery of the new one not made by Ro actemara . But on reading the information not expecting it to be any different
Thank you for this. I'm seeing my Rheumatologist in 3 weeks' time, so I'll ask her about it. I'm keeping fairly well on 4mg pred, but can never quite know what's happening inside my arteries! 🤨 Good to hear that you are in such good hands - your consultant should be added to the list of good 'uns!
One does wonder sometimes why they leave so quickly- in this case under 24 hours - so as you say miss a lot of advice, which is why they came in the first place. 🤨
Yes, I wondered if they would rather believe their Rheumatologist than people who have been there and got the T-shirts and read so much around the subject! Their loss....
Hi there, I wish I had gotten a book when my doctor failed to diagnose my GCA...I'm so glad you did and started treatment. After a TA biopsy in August of 2019, I was put on 80 mg on prednisone because I'd suffered some vision loss....not being diagnosed. Boy, was I messed up too. Because of another health issue, I was admitted to the hospital, switched to prednisolone and Actemra was started, October 2019. All the steroids were diluting the effectiveness of seizure meds I'd been on. I'd been over 43-44 years without a seizure and wanted to keep it that way. I did. Being in the states there is no problem in obtaining it long term. My rheumy is really first rate too and I'm glad you are confident in yours. My steroid dose was so high for so long, I honestly cannot say I 'had headaches' caused by Actemra. I've come to feel strongly that our fatigue is a factor simply because we have an autoimmune disease. Some days I'm so tired and others, not so bad.
I always encourage a positive and patient outlook and you sound as though you have it. I just got to 10 mg this year for the first time....and I've been taking Actemra every week with two exceptions. Because our immune system is so suppressed on it...when I had celulitis and diverticulitis...I was taken off it until the issues were resolved.
On June 29, 2024, I just stopped my pred, I'd been on .5 mg for a month and 1 mg per month for two months prior to that. My GCA got a running start on my body and was moving like a racehorse...refusing to be bridled!! I know my specialist intends to keep me on the weekly injections. My blood test will be normal due to the Actemra...although I managed to raise them once in 2023 while on Actemra. Each of us is unique and though we can get support from the super people on this forum (I'd have been lost without them), our body will be the boss and our guide. Please feel free to reach out if I can help in any way.💞
PS...I don't know your age or other issues, hope there are none! I'll be 84 in September and lean heavily on quality of life being a priority. I've noticed a little pain here and there that is new to me since being off pred all together, actually noticed it when I was midway through half a milligram. My doctor and I will chat about that on my follow-up soon. Keep the positivity going...my 19 year old granddaughter visited me for 10 days and I amazed myself at my energy level...nothing but joy! Just know that so many have come out the other end and we will too.💞 ( Wow...gabby me!)
Hi Grammy80, you've taken so much time to reply to someone who is now "Hidden". This means they have left the Forum and won't get your reply. What a shame and their loss! See above comment from DL. 🌻
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