Adjusting to life with temporal arteritis

I was diagnosed with PMR and GCA in April 2023. High doses of Prednisone relieved my symptoms but tapering just sent my labs back up. after 6 months and 2 tries at tapering my Dr. said it was not working. We then switched to Methyl Prednisone and Actemra Infusions. The first 2 infusions worked well. With the third infusion I had a severe allergig reaction with trouble breathing. I am waiting to meet with the rheumatologist to see what other treatment options are available. After 9 months I feel like I am starting all over without any progress. Has anyone had other treatments that were successful?

Hello @gee18, I'm sorry to hear you having trouble with the treatment for PMR and GCA. You mentioned the prednisone relieved your symptoms but tapering sent your labs back up. You also said you were just diagnosed in April 2023 and put on high doses of prednisone. I'm wondering if you may have been trying to taper off of prednisone too quickly. I'm not a doctor but my Mayo rheumatologist always told me to listen to my body when it comes to tapering down to the next level of prednisone and let that determine when it's time to taper down. There is another discussion that you might find helpful on alternatives.

--- PMR: Are there treatment alternatives to Prednisone?: https://connect.mayoclinic.org/discussion/alternatives-to-prednisone/

I'm tagging @tsc and @nyxygirl who may also have some thoughts or suggestions on alternative treatments and tapering.

Hi @gee18, I'm wondering if a temporal artery biopsy confirmed your GCA. If so, then I guess your diagnosis is correct. What was your initial dosage?
I was initially put on 40 mg per day of prednisone after a positive temporal artery biopsy. My rheumatologist had me taper down by 5 mg every two weeks, and I had a CRP test every month. Only once did I have to go back up to the prior dosage because the CRP was elevated. At the lower dosages of prednisone, 10 mg, I tapered down by 1 mg every two weeks. I was on prednisone about 17 months and have been off it for 14 months with no flareups. I have no experience with any other treatments.
If the prednisone is not working for you, I wonder if you could have something else going on. Maybe that's a question to ask your rheumatologist.
I wish you the best.

ok. 62 year old male here. had issues related to neuro changes for about 8 years after a bad virus infection. i been through possible sarcoidosis of the lungs that seem to be stable, neurological coordination, strength impact on my hands and legs that largely improved over the years (neuro was concerned for the worst) , my neck was a mess and I had a c2 to c7 neck spinal surgery, and a small right sided unruptured ica 3,5 brain aneurysm ( that my surgeons wanted to repair but I took a wait and see approach.

Now I awoke 3 weeks ago with tender to touch left eye temple pain (especially close to the eye) but always present to some degree without pressing it. slight blurry vision, went to Ophthalmologist who is concerned for GCA. Ordered blood tests for C reactive protein and Sed rate. Awaiting results from yesterday blood draw. Also found new left sided small 2.5 mm aneurysm left ICA. MY added concern is last few times I tested c reactive protein it was elevated to around 5 or 6 back in 2017/2018 and really not sure the cause. Maybe this is all related? Maybe the blood test won't provide me any indications since I was elevated back in the day? Aging is not for the faint of heart/

Hello @taxmeless, Welcome to Connect. I would definitely be concerned about GCA given the symptoms you shared. When I was diagnosed with PMR, my rheumatologist and primary care docs were always checking with me to see if I had changes in vision and any pain or tenderness around the temples or scalp because they wanted to make sure I didn't also have GCA.

Has your doctor started you on any treatment for GCA? Have you had a temporal biopsy to check for GCA?

The ophthalmologist just ordered the blood tests before any therapy. . I received results tonight that surprised me. The standard c reactive protein was 6.2 and normal (8 mg is the threshold for elevated). This test is different then 2017 and less sensitive with different scores. The competing test range is under 1 as good.. The sed rate was 2 and extremely good. So i suspect I was alarmed about gca for nothing. I doubt they will order steroids or a biopsy with these results. Although I read the c reactive isn't bullet proof. Onto my gp and a neurologist or rheumatologist next for consultation. Thanks for replying.

Hi Becky - thanks for all the helpful info. It has been a big change for sure. I had the bilateral surgery because my body was overproducing cortisol and I had all of the classic symptoms of Cushing disease. I do have another question for you which is I have the flu and am on medication but feeling really horrible and I do not have a resource at Mayo until they reopen from the weekend. I believe when someone who has had an adrenalectomy gets sick such as the flu the patient is supposed to double up on the prednisone that they have been prescribed. I have been digging through my notes to confirm that but thought I would check here to see if anyone knew a definitive answer, if you have any knowledge, please share. Thanks so much!