GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica)

My artery biopsy came back negative, no giant cells. It did show chronic inflammation. I will have a sed rate and crp done in 2 weeks to see if sed rate is improving. I am taking 3 mg prednisone (increase from 2). The pain in jaw and around eyes is not gone, but much improved. I did have 2 viral infections this fall (tested negative for Covid, but wondering if I had it), so that may be behind all of this. 3rd bout of PMR and I read about the related conditions. There is so much we don’t know.

Waiting for my biopsy result done this past Thursday. Also was referred to ophthalmologist, had a good baseline exam. When the head pain first came on I thought it was just a really bad flare up, GCA not even on the radar. The eye doctor said had my doc not given me a steroid injection that day I would have lost vision. Still on 60mg prednisone, waiting for results before weaning, no pain at all at present.

I have a temporal biopsy this week. Wondering if any of your symptoms were as mine: gushy pounding in ears; very blurred vision in one eye; the feeling when I go to take a step as though someone has just knocked me from behind; knock things over when reaching for something. Dizzy, foggy; sweat easily.
What was the biopsy experience like?

Hey, the general experience was good. Initially we were going to biopsy both sides, but the vascular doc suggested we just do one side, the one that hurt the most. Thought was if it happened again, wouldn't be able to get another one. Very minimal incision discomfort was about it.
My symptoms started as bilateral neck pain ( left side of neck has hurt for years) that moved into back of my head, stabbing pain in my right temple, then jaw pain and stiffness. Day 3 my vision blurred. I got this feeling of doom, thought I was having a stroke. That's what got me to the ED. My distance vision is still slightly off, my glasses do help. Have not had any more symptoms since my dose was bumped.
Good luck, thoughts and prayers your way.

Thanks for your reply. Wondering if you were in treatment for PMR before. Glad to hear your symptoms have gone away. This is pretty scary stuff. Thanks for the kind words; wishing you the same.

Thanks so much, the replies and encouragement has mentioned so much.

I started Actemra 3 months after starting Prednisone. Gradually decreased Prednisone down to 0 after 6 months.I have now decreased Actemra to 14 days and I hope eventually to once every 30days.
There are many options besides Prednisone once the initial pain is under control. Why are Rheumatologists not suggesting this??

I started with GCA in October, 2020 with 80 mg of Prednisone. I developed PMR in July 2021. It has been an up and down thing with Prednisone. I am now at 15 mg.
Over time, I tried Methotrexate and, then, Actemra. I could not tolerate the side effects. I am tapering slowly with the Prednisone. The fatigue is overwhelming. When I can, I exercise and try to live a normal life. My best to you. Patience is the watchword.

Good morning. I have PMR and was on 7 1/2 dose then developing headaches extreme for probably three weeks. My fault for putting up with all the pain before going back to the rheumatologist. I’m kind of stubborn. Rheumatologist immediately put me on 60 megs of prednisone a day. my rheumatologist ordered biopsies of both temple areas and came back positive for GCA in both temples. Thankful, he seems to be proactive and got me on high dose prednisone right away.
Because of my osteoporosis he Put me on medication for my bones. Also medication to help with the other problems with taking the prednisone like developing diabetes, water retention, etc.
I’ve only been on the 60 Meg’s daily for three weeks. I still have ringing in the ears. It’s still difficult for me to chew and I still have blurry vision, mostly distance. On the high dose, my PMR naturally is 100% better and as soon as I can have three days of a pain-free jaw, then I can start tapering the prednisone. I was wondering if anyone had the same problem with the painful jaw, and how long it took able to chew without pain. I blend most of my food. I keep trying to get through a meal, but sure takes a long time. I have to rest so that my jaw doesn’t hurt.
My husband always said “you have to laugh, That’s what I get you through the hard times” and I try to remember that you and everyone on this site should remember that too.
Thankfully
Carlotta

After 6 weeks of begging for answers and 6 misdiagnoses, I was diagnosed with temporal Arteritis of the face, head and tongue. I was on 60 mg of prednisone but was bumped to 80 the last 5 days. Still have the headache, jaw pain and my tongue blows up sometimes when I eat. So my question is has anyone else been on this much prednisone? I weigh 135 so it seems extreme but I don’t want to lose vision or have a stroke, not to mention the pain. Was anyone put on methotrexate or actemya for this monster disease? Has it helped?