My GCA Story

[Preacherball]

Hi everyone. Last June I became a member of the GCA club, though not by choice. I wanted to share my story in case others experience somethig similar. It began like a common virus; sore throat, runny nose, mild fever of 100.5. I thought it might be covid, so got tested and was negative. I had been fully vaccinated and at that time, prior to the variants, we thought we were very well protected. I talked to my doctor, and was told to come in to the office if the fever did not subside in a week or so. It did not get better, so I went in. Blood tests were done, but it was not evident where this "fever of unknown origin" was coming from. It did not improve, so I was told to go to the ER, where they had access to additional tests. Again, no clear reason for my fever, chest congestion, and worsening cough. I also was unusually fatigued, falling alseep much earlier than normal. I did have scalp sensitivity, but no jaw pain or vision issues. My symptoms were like a really bad cold with a persistent fever.

My primary doc could not figure it out, so he referred me to rheumatology and infectious disease. After a few days, and much to my surprise ,I got a phone call from the rheumatology clinic saying that a doctor wanted to talk to me right away. I was glad to hear that, as I was feeling pretty lousy. We did a virtual visit, I described my symptoms, and he said it was likely something called Giant Cell Arteritis. He immediately started me on 60mg of prednisone, and I schedued a biopsy a week or so later. The biopsy was not definite for GCA, nor did it rule it out. My blood work indicated a very high sed. rate . I responded quickly to the prednisone, feeling better quickly. All this led to the conclusion that I did have GCA, although not with the typical symptoms.

I started tapering off prednisone, a six month taper, along with beginning weekly Actemra injections. Fortunately, I qualified for getting Actemra for free, as it is ridiculously expensive. I got off prednisone in January and was doing great on Actemra only. Then with covid spiking, supply issues arose with Actemra, and I could not get it on time. My doc didn't want to put me back on steroids unnecessarly, so we agreed to see how it goes off the meds. Unfortunately, 6 weeks later or so I got a sore throat and began symptoms of a cold again. But this time, no temp., so I really did think it was just a bad cold. But, it did not go away after a week or so. As it turns out it was indeed a flareup, causing symptoms similar to the first time, which included the worst cough I have ever experienced. I got back on steroids, 40mg this time, and back on Actemra as the supply has improved. I am tapering by 5mg each week. I'm doing much better again, but humbly realize this disease is part of me and I'll need to keep treating it for quite some time.

Well, that's more than you probably wanted to know, but I thought I'd send my story out there. I'm especially curious if anyone else has had these cold/sinus/cough symptoms that I've experienced. Be well!

[SheffieldJane]

That is interesting but I think you’ll find that it wasn’t the typical presentation of GCA. It actually sounds more like Covid. Typically GCA presents with an unusual severe headache, jaw claudication ( pain increasing as you chew) scalp tenderness, pain in the tongue, sometimes there are visual symptoms that are most worrying because your eyesight could be at risk - especially bright flashes in one eye.My own GCA/LVV did not present like this. The halo effect in my arteries was only spotted in my armpit during a specialist ultrasound scan. This scan was prompted by my feeling unwell on 3 mgs of Pred for PMR. My symptoms have remained vague but severe with PMR like pain during flares. I believe this means I don’t have cranial GCA or I didn’t at diagnosis two years ago. I am also treated with 7 mgs of Pred and Actemra. People need to be alert for different kinds of presentations. It makes diagnosis very difficult. I am glad your doctors were on the ball.

[Preacherball in reply to SheffieldJane]

Yes, thank you. It did present like covid, both initially last June and when I flared in early March . Both times I tested negative for covid, plus it did not get better after 10 days or so which you would expect with covid. The second time I did not even have a fever and was on a ski trip when things went south. I recovered quickly after being put back on prednisone. So, it is a strange disease that can have confusing symptoms, which makes it tricky to diagnose. I am very happy my doc caught it and got on it right away.

[DeepThought2]

Dear Preacherball. My GCA (large vessel type) started also with cold -like symptoms, light fever, fatigue and cough, which did not go away again. I had also no typical GCA symptoms (most likely because only the femoral and clavicular arteries were affected). After 3 months and after many diagnostic tests (including MRT and PET-CT) GCA (LLV - large vessel vasculitis) was diagnosed. I had also high erythrocyte sedimentation rate, high CRP and interleukin-6 levels. With the help of Actemra I could taper prednisolone quickly to zero and i take Actemra now for approx 1 year with no side effects and being in full remission.

[Preacherball in reply to DeepThought2]

Thanks. That sounds very similar to me. Glad to know I'm not the only one with those symptoms of GCA.

[PMRpro Ambassador]

You might like to add your story as a reply to this thread which serves as a reference to others:

healthunlocked.com/pmrgcauk...

[Preacherball in reply to PMRpro]

Done. Thanks!

[Broseley]

Hi Preacherball, I too started out like you, though I didn't realise the connection at the time. January 2020 0H and I both had covid-like symptoms, him worse than me. For me, sore throat, feverish, cough, fatigue. I developed awful debilitating pain on movement in my right hip. PCR tests negative. Gradually my covid symptoms cleared up but hip got worse despite physio. By June it had spread to my back and knees and to some extent my left hip, all became really stiff. By August I had neck and jaw stiffness and a headache, feverishness and eye pain. All this time I still have the sore throat. Finally got a PMR/GCA diagnosis in late September. All symptoms cleared within 24 hours of being on pred. On tapering down from 40mg the sore throat came back at 20mg. I have seen ENT specialist who couldn't find any cause. (OH is still undiagnosed and untreated though his symptoms are not PMR, he's a bit of a puzzle, the best they can come up with is non specific systemic connective tissue disease or something like that!)

[PMRpro Ambassador in reply to Broseley]

And on what grounds is it not PMR? There is no definitive rule-in/rule out test.

[Broseley]

He has no stiffness but some back pain. It's mainly chest pain on bending, GI problems, Reynauds, red nose, intense fatigue, breathlessness. RF negative, anti nuclear antibodies positive. I suggested lupus but the experts think not.

[PMRpro Ambassador in reply to Broseley]

How bizarre!

[Broseley in reply to PMRpro]

Yes I wish they could decide what the problem is and give him some treatment. The breathlessness and fatigue affect him most as he is unable to do anything physical other than walking. He's had to give up work. He's had all the tests and scans under the sun. Another chest CT next week. Why?

[PMRpro Ambassador in reply to Broseley]

Mine even struggled to walk - and I know how life-changing one half of a couple being ill is.