Possible GCA

Your doctor will have to tell you how to taper if necessary, but I just googled how to get off prednisone, and I found a lot of variation in the answers. Some websites say you can just stop prednisone if you've only been taking it for 5 days or less, and other websites say you don't need to taper if you've taken it for 3 weeks or less.

Thanks Jeff, I started at 20mg in December and tapered to my current dose of 12.5. I'm hoping if my blood work shows no signs of higher inflammation that I can just go back to 12.5. My goal has been to get off prednisone this December. PMR is not a fun journey!

You might find it helpful to scan through the list of discussions on tapering off prednisone - https://connect.mayoclinic.org/search/discussions/?search=tapering%20off%20prednisone.

Have your GCA symptoms cleared up? Since you're taking prednisone, I'm not sure you can trust the inflammation numbers from blood tests. My GCA was confirmed with a temporal artery biopsy, but ultrasound can also be used.

Good idea to get thoroughly screened with ultrasound
and an exam with an ophthalmologist. Lab is not as accurate once you are on prednisone.

I'm waiting to hear back from the doctor. He wanted to see if the esr and csp tests showed a difference from December. I'll ask about an ultrasound.

Having a biopsy next week. How long were you on high dose prednisone after GCA was confirmed?

I was having episodes of temporary vision loss, so I started on high dose prednisone before the GCA was confirmed. I spent 3 days in the hospital and got an infusion of high dose methylprednisolone each day, and then I took 60 mg of prednisone per day for 6 weeks. They did the biopsy the second day I was in the hospital, and I got the positive results a couple of days after leaving the hospital. I started taking weekly Actemra injections about a month after the diagnosis. After the 6 weeks at 60 mg of prednisone, I tapered 5 mg every 2 weeks. So I stayed at or above 40 mg for roughly 14 weeks. I had a big problem with insomnia most of that time, but it improved quite a bit as I got close to 40.

I think that for you a negative biopsy will not rule out GCA. I found this information on Google:

"A temporal artery biopsy can still be considered valid even if you've been taking prednisone, but it's important to perform the biopsy within a few weeks of starting steroid treatment as the diagnostic accuracy can decrease significantly if you've been on steroids for a prolonged period; ideally, the biopsy should be done within 2 weeks of starting prednisone for suspected giant cell arteritis (GCA).
Key points to remember:
Early biopsy is key:
Due to the potential for serious complications from GCA, most clinicians recommend starting prednisone immediately upon suspicion of the disease and performing a temporal artery biopsy within a short timeframe, even if it means doing the biopsy while on steroids.
Decreased accuracy with prolonged steroid use:
The longer you've been on prednisone, the less accurate the biopsy may be as the medication can suppress inflammation in the artery, potentially leading to a false negative result. "

There is also the possibility that the biopsy just happens to miss an inflamed area of the artery. Here is another quote from Google:

"It is possible to have giant cell arteritis (GCA) even if your temporal artery biopsy is negative, as a negative biopsy does not definitively rule out the diagnosis due to the possibility of "skip lesions" where inflammation only affects certain parts of the temporal artery, potentially leading to a false negative result; if clinical suspicion is high, further investigation or treatment may be necessary despite a negative biopsy. "

I hope you get a clear result. Your case is a lot more challenging to diagnose than mine, because I was having the severe vision problems plus a lot of other GCA symptoms, and also I was not taking prednisone before I got diagnosed.

True that a biopsy is not always the only way to diagnose GCA.
Ultrasound of larger axillary and aortic or renal arteries can pick up other involved areas.

There is an interesting thread in this forum https://connect.mayoclinic.org/discussion/new-dx-of-pmr/ where @maye discusses getting off of prednisone completely in only 3 months by taking Actemra and tapering prednisone rapidly.