Questions remain

[TomSC]

I don't know if this helps anyone. But I wanted to relay my story which is still undetermined.

In late 2016 I was diagnosed with temporal arteritis, about two months after having sinus surgery. All the symptoms were there including a sore scalp, extreme pain in my jaws, the back of my scalp, my eyes, and temples. I also showed evidence of some ischemia in my left eye. While my biopsy did not show evidence of GCA, my neurologist, ophthalmologist and ENT all agreed that it was temporal arteritis.

Still my rheumatologist had reservations. She thought it may be a sinus issue. I was treated with prednisone at 60mg per day for two months. The headaches resided within a day of starting the infusions. And we had to go back and forth with doses as I began to wean. It took a year to get off the prednisone and I have remained free from symptoms since.

I'm relaying this in the realization that the symptoms of temporal arteritis may also be indicative of sinus issues. I don't know that I will ever find out the cause of my symptoms, but the same treatment as that for temporal arteritis worked for me.

[PMRpro Ambassador]

As you say, 60mg pred would also be the first line approach for GCA. And there are patients who manage to get off pred in a year. Did they not attempt a biopsy or ultrasound imaging?

[TomSC in reply to PMRpro]

The biopsy of my right temporal artery was negative prior to initiation of the prednisone. But I was aware that a significant number of biopsies can be negative.

[PMRpro Ambassador in reply to TomSC]

I think it is more than half - hardly encouraging is it!!!

[TomSC in reply to PMRpro]

Yes, especially when you're trying to survive the daily headaches while hoping not to go blind. In my case, I am reluctantly agreeing with my rheumatologist. I've learned that there are health issues that fall outside of the normal identified issues. There are similar symptoms to completely different diseases. In my case, the fact that I was able to get off the prednisone within a year and remain free of symptoms - so far- lends credence to my rheumatologist's hesitancy to definitively label my condition as either GCA or a sinus issue.

But she certainly provided the solution to eliminate my suffering.

[PMRpro Ambassador in reply to TomSC]

It applies to GCA and PMR as well as a lot of other autoimmune disorders and that is partly what makes accurate diagnosis so tricky. The consolation is that they are all really just symptom management, there is no cure, so there is a lot of overlap. But GCA is rather tricky because of the threat of visual loss. I keep telling the medical people to stop banging on about different drugs - first find the mechanism and a definitive marker so you KNOW it is GCA or PMR for sure.

[TomSC in reply to PMRpro]

Well said!