What does your side kick ( pain) feel like ?

[Maggiemuffins]

Hi all ! I haven’t been on for a while but I’m very frustrated now with my left temporal pain . It’s been a year now that I’ve had the pain in left temporal side of my head . Saw a rheumatologist ( thought it was a pinched nerve ) and then saw a neurologist ( thought it was GCA) . Normal bloods , biopsy, MRI with. And without contrast . Was on prednisone during the summer. It helped a bit but I hated it so weaned myself off ( as per rheumatologist S advice). I’m on indo - methicin now ( an NSAID). It’s helping somewhat but pain is still there . I even went to a shrink so that I could tell the doc that it’s not in my head ! Lol.

My question is what does GCA feel like in your temple area? Does it get worse at certain times ? The pain level stays at 1-2 usually. I’m just trying to figure out what is wrong with my head , since I don’t fit the typical patient I feel like my doctors are just leaving me hanging out to dry here .

But I just cannot go back on prednisone. It caused too many side effects that were affecting me physically and emotionally.

Appreciate any advice! Thanks!

[PMRpro Ambassador]

"I just cannot go back on prednisone."

If what you have is GCA then you have a very stark choice: take pred or risk losing your sight. I'm not being dramatic - that has been the reality for several people on the forum who weren't diagnosed in time.

However - GCA pain in general is described as "like no other", not a 1-2, and there are usually other symptoms, even if the blood markers remain in normal range which they do for about 1 in 5 patients.

[Maggiemuffins in reply to PMRpro]

I am aware of the stark reality but I won’t be taking prednisone until I get a diagnosis. Prednisone drove up my blood pressure to dangerous levels and I have no history of high blood pressure. I was started on a low dose and gradually worked my way up and then after a few weeks on it I ended up in the ER because of dangerous BP levels which it took a while to subside . I was only on prednisone as a trial because no one knew what I had and they still don’t .

I know it helps others but obviously a high BP was more of a problem than sight at that point and both ER doc and rheumatologist said I needed to come off of it . I should have explained that in my post .

[PMRpro Ambassador in reply to Maggiemuffins]

Nor should you take it without a diagnosis.

[Maggiemuffins in reply to PMRpro]

I agree . The doctors wanted to do a trial of it to see if the pain would respond to it . Stupidly I agreed to it because nothing seemed to be working at that point. I knew what some of the side effects would be having read a lot of what others were going through. I expected the fatigue, the moon face and I did get those symptoms and I could have lived with that , but the high BP levels well that was a game changer for me . Now I’m on an NSAID with anti ulcer meds for now , it does keep the pain at 1 most days , it’s not ideal but I still have no diagnosis but my BP is good ! Lol

[Canygirl61]

Dear Maggiemuffns,

This is me too, but on both temples! I saw a vasculitis specialist who diagnosed me with systemic Wegeners (GPA). He said I’m “atypical.” I was told that my temporal arteries could be inflamed and mimic GCA. I did four rounds of Rituxan infusions last fall, yet still have temple tenderness. My left side has been the most achy, and I sometimes feel as if I’m being stabbed— like I imagine a stroke might feel. My local rheumatologist kept telling me to give it time, that Rituxan can take weeks or months to work. I was on low dose of prednisone, which didn’t really help. I’m off now, as of a couple of weeks ago. So I’m in weird limbo. I’m following your post.

Best of luck!