GCA conserns

just read your situation and I'm considering Actemra infusion... There are so many risks that are quite frightening. I've had pmr (after covid vax and booster ) I then tested positive for GCA. I haven't any vision probs. Pain in temples and back of neck and upper shoulders.
I've always been an active 75 yr old female. I do Pilates every day.(when possible) I've been on Prednisone for 3 yrs and tapering to 3 mg. was doing great until PAIN in temples and a compression feeling around back of head, neck also. Rheum said it was a relapse and could happen even tho I thought I was doing fine. He suggested Actemra Infusion and taper off Pred. I was scared after reading all the info on the infusion.. Could you tell me more about your experience. The Rheumy has me back on 15 mg pred. so disappointed... he tried putting me on 20 but blood pressure was high and i hate pred. thanks for your insight
Dianne

@ddmo

Hi Dianne. You may find the following discussion useful. It includes my comments along with a few other comments from other people.
https://connect.mayoclinic.org/discussion/actemra/?pg=1#comment-977608
If you have any questions ... feel free to ask.

As for high blood pressures on prednisone I can say the following. My blood pressures while on prednisone soared to 210/110. I had no prior cardiac history so it was a surprise to be diagnosed with left ventricular hypertrophy (LVH).
https://www.mayoclinic.org/diseases-conditions/left-ventricular-hypertrophy/symptoms-causes/syc-20374314#:~:text=Left%20ventricular%20hypertrophy%20is%20a,cause%20is%20high%20blood%20pressure.
I went from no blood pressure medications to 3 blood pressure medications after being referred to a cardiologist. The cardiologist said my heart was being stretched due to high blood pressure which in turn was causing cardiac arrhythmias. The blood pressure medications made my blood pressures better but still not good.

When Actemra enabled me to taper off prednisone, my blood pressures normalized. I am now off all my blood pressure medications in addition to being off prednisone.

I would go with the GCA theory. I had PMR and was off prednisone for six months when my ESR went up to 85. I had a temporal biopsy which came out negative but was treated for GCA and apparently that’s what it was. We are now going back to 2015. I have had several relapses, and I am still on prednisone and.Actemra.

Hi @nyxygirl, thanks for your message. In terms of the GCA diagnosis, the doctors say I have "presumed GCA" or "non-cranial GCA". I think they call it this because imaging has never revealed it, but my symptoms and blood tests results were so much worse than what is usually seen with PMR. The truth is, all they really know is that I had a tremendous inflammation event. It had many PMR-like symptoms, extraordinarily high inflammation blood markers (CRP was measured at 347 mg/L), and multiple other inflammation symptoms that aren't easy to explain. Fortunately, the treatment regime (first Prednisone, then Actemra, aka tocilizumab) has been effective. Especially the Actemra is working well. Unlike Prednisone, Actemra has no side effects that I can feel, so there's no rush to get off it. Blood tests do show a part of my immune system, known as C4 complement, is below normal, which is expected with Actemra. I guess this makes me more vulnerable to infection. Also, Actemra does slightly raise my liver scores, but they are still in the normal range.

Mt ophthalmologist told me to run, not walk, back to her if I had even one symptom of GCA. ER rooms do not have the equipment to test for it visually, rheumy's also often downplay the problem, only my ophthalmologist took it totally seriously. She went so far as to give me her personal cell number to call if I had any symptoms.
My rheumy told me that she screened for it once and said nothing to me since I apparently did not have symptoms I believe PMR patients should be informed that it is possible, at any time, and to be on the lookout, taught the symptoms and the proper action. My ophthalmologist said it is one of the very few eye problems that is considered a true medical emergency.
GCA can cause permanent eye damage and blindness. Why would anyone fool around when that is a possible outcome? OK, some of us would overreact and worry needlessly. If that is the worst outcome that a warning of this type has, then isn't it worth it?

A doctor friend told me to go to the ER immediately if I had any visual disturbance. Informed about a patient's history of PMR/GCA, the ER doctors treat with IV steroids, based on what I've read from others posting about this in Connect
I was diagnosed with GCA. Had it once, was off prednisone for a year and a half, then relapsed. Currently taking 20 mg of Prednisone, down from 40. Before diagnosis, I had two incidents of visual disturbance: I could only see white out of my right eye. I thought it was from working on the computer too much. I didn't have any permanent damage to my eye, fortunately.
You're right, @jabrown0407, anyone with PMR needs to be informed of the symptoms of GCA and be on high alert to seek treatment if they experience any visual disturbance.

My experience with GCA is similar in that I too have large vessel vasculitis GCA , no cranial or temporal involvement after one year of pmr.
There were very few symptoms, just occasional night sweats, no pain , no head and neck or visual symptoms . Subsequent Blood tests showed high CRP and high ESR , low Haemoglobin.
Pet scan confirmed extensive GCA of large vessels. You don’t feel inflammation in your aorta!
I had a small pericardial effusion ( fluid around my heart) after extensive cardiology checks seems I have no cardiovascular damage including no aortic damage.
Started 50mg pred and 162mg Actemera sub cutaneous weekly , simultaneously . A four month taper off pred schedule. Now Down to 10mg pred and Dr is confident I’ll be off pred and continue actemera for 12 months as a mono therapy. He says any relapse will be treated with Actemera alone and no more pred .
Anyway just be aware GCA is not always temporal and symptoms can be few .
I’d actually been travelling from Australia around Europe, had been walking, doing long haul flights etc … and was feeling great at time of diagnosis. Only the night sweats alerted me to something was not quite right, and sent me to the Dr when I got home .
Dr told me he had 10 new GCA patients in the last yr , and all of them presented very differently.

This is good information, appreciate you sharing, I don’t feel my rheumatologist is doing enough, no regular bloodwork?!
Nothing really,
I’m going to insist that he do more at next visit.
Thank you

After a fruitless ER visit when my husband was experiencing severe pain in his side along with lethargy he was referred to a gastroenterologist. The next day my husband went suddenly blind. It was our opthalmologist who sent us to ER for testing for GCA. A temporal biopsy confirmed but too late as my husband is now permanently blind. Most of what we have learned about GCA and PMR has been thru this forum and a book I bought on Amazon Good luck and go immediately to ER if you experience any vision problems

I am so sorry to hear about your husband's blindness, @jojobarrk. With a proper diagnosis, it could have been prevented. But sometimes GCA doesn't present textbook symptoms. Waiting to get the results of a biopsy could take too long for the diagnosis, which is why some medical textbooks suggest giving high dosages of prednisone if GCA is suspected.