Love the information found here! Grateful to all of you🙏
Currently doctor has me on prednisone(slowly tapering currently at 8mg, next week will begin taper to 7.5) methotrexate (10mg weekly) and monthly infusion of Actemra equal to the weekly auto injection of Actemra. I question being on both methotrexate and Actemra and was wondering if any others are taking all three immunosuppressants.
I gather it is a relatively common approach in RA but it certainly wasn't part of the GCA clinical trials with Actemra. In the UK, use of Actemra is restricted to a year and rheumies use methotrexate to replace the Actemra. Does it work? Don't know! The clinical trials of Actemra also didn't use the monthly infusions for GCA - again, don't know why.
Personally I would be very unhappy if I were being asked to take both in order to get me off the pred when using Actemra is shown to achieve that. I had a long discussion with a renowned German endocrinologist at a vascular meeting some years ago and discovered that immunologists are not at all happy about the way rheumatology piles on one immunosuppressant after another because they think this makes the patients more susceptible to other things later on - including cancers.
Thank you for thoughts, reply….could not find any information regarding GCA and Actemra, plus prednisone and methotrexate. Think I read somewhere Actemra and methotrexate are for IL-6. when questioned rheumatologist, she said it was to prevent a flare. Thus was curious if others on same 3 meds or just Actemra and prednisone- or should I continue all three. Trying to prevent even more damage to body/organs.
Methotrexate doesn't target IL-6, it suppresses the immune system. Actemra targets the production of IL-6, but that is all it targets and there are other underlying mechanisms for inflammation in GCA which is why half of patients don't get off pred altogether.
Thank you, hopefully not that half that will always need prednisone.
Is the Actemra enabling you to taper the pred? If you are taking methotrexate as well you might not know. Why not speak with your Rheumy to see what his/her thinking is. If agreeable, you might be able to stop the metho to see how Actemra works alone. It is working for me, I'm on 1.5 mgs pred. I know it's not effective for everyone but definitely worth the conversation.
Really not sure if Actemra is helping. Have a light tingling sensation in right leg, sometimes right arm, as well as right side of face. Had this prior to Actemra as well. Still trying to determine what is GCA flare/symptoms and what could be nerve induced from some spinal stenosis. Orthopedic doctor said neck stenosis would affect arm, but not face, so makes me wonder if I should be tapering to 7.5 next week. Figured will continue with slow taper and see what happens….thank you!
He could well be wrong - ankylosing spondylitis affecting the neck can reduce the blood flow to that part of the face and mimic GCA symptoms causing jaw claudication and problems with the tongue.
Interesting! I am actually going to get Genectic testing done in July, in hopes it might give a clue to what is going on. Diagnosis was GCA in October 2020, as had high CRP and ESR, also discovered thoracic Aortic Aneurysm, so even though biopsy was negative doctor felt as though symptoms led to treatment for GCA. But since the right sided tingling in face, arm, and leg have continued sporadically with all the meds I am on make me wonder. I do have jaw pain at times, as well as headaches, but meds could play a role in headaches. Think if my biopsy had been positive I would not be questioning as much.😊
If the biopsy is +ve you have a 100% accurate answer - negative biopsy doesn't rule anthing out. They just didn't find what they were looking for and that is meaningless. But not enough doctors seem aware of that. Then it goes on symptoms and response to pred.
Now what MIGHT be interesting would be the response to TCZ ...
Someone on the forum apparently had GCA - but just didn't respond to TCZ. When they did a cytokine assessment it wasn't IL-6 they found but 2 other cytokines. So whatever it was - it was not GCA. And I do wonder why they don't look at that more.
How interesting…..will see if they will test me/cytokines, would be good to know, as know something was really wrong(felt horrible) , but since going on almost two years, would be nice to know I am on the correct medications.Thank you!
I don't know how widespread the tests are - IL-6 is fairly common now, whether there is a sort of "panel" of cytokines available generally I don't know. I was a bit surprised when this member asked about the results - but it was clear that IL-6 wasn't implicated in the inflammation, 2 other cytokines were and TCZ doesn't have an effect on them because it is so specific.
Thank you! Will be interesting to hear response from doctor when I ask her thoughts on this….somehow think this is a test not readily available.
Actemra twist
Tocilizumab(Actemra) withdrawn
Covid-Actemra- PMR- GCA- I survived! 
HELP...TCA,PMR, FIBRO Actemra
