Giant Cell Arteritis Diagnosis

Hello. I, too, was recently diagnosed with GCA. I am so pleased to have found this group and will be following with great interest. I am into my fourth week of prednisone. I started at 60 mg/day and am now at 35 mg/day. My temporal artery biopsy was negative but all my other markers including inflammation are strongly suggestive for GCA. Many symptoms were alleviated quickly after beginning prednisone. However, not all my symptoms have disappeared yet.
I’m hoping that the posts in this group will help me understand what is a “normal’ progression through treatment. Conversely I’m hoping that the conversations will help me ask smart questions of my doctors and to identify when my experience differs from the “norm.”

It seems my post is the first to this discussion in over 18 months! Would appreciate a shout out from anyone reading this to see if this is truly an active group. Thanks.

Hello, and welcome to the forum. It is active, and there are quite a few people like me who have GCA. I can tell you about my progression. I started treatment June 28th of 2024 for PMR and GCA. I had some episodes of temporary vision loss, so I had 3 days of high dose methylprednisolone in the hospital to start my treatment. Then I started at 60 mg prednisone, and I also started taking weekly injections of Actemra 6 weeks after starting prednisone. My temporal artery biopsy was positive. Today I stepped down from 2 mg of prednisone to 1 mg. I hope to be finished with prednisone in a month, but I will need to keep taking Actemra for at least a couple more years. I haven't had any symptoms at all of GCA or PMR since I started treatment. I think it took about 16 weeks for me to taper down to 35 mg, plus I started taking Actemra while I was still at 60 mg. I think my taper might have been a little slower than normal because of the vision problems I had with the GCA. My vision turned ok though. It sounds to me like maybe you have tapered too quickly if you're still having symptoms. Have your doctors discussed Actemra? I've had a good experience with that and it has helped me to taper prednisone and avoid having any flares.

Please feel free to ask any questions you might have. I'm sorry you have GCA and have to experience high dose prednisone.

I have PMR and GCA. It’s been about 18 months. Started at 60mg of prednisone and recently got down to 3 mg and all my blood test markers were normal. I really believe the PMR is gone. Went to 2mg and quickly had GCA symptoms, sore scalp, runny nose, neck pain, headache, etc. but no PMR symptoms. Went back to 5mg and GCA symptoms went away. Seems like prednisone can handle my problems with minor side affects (fatty face and fat around my middle). I’m going to stay on 5mg until I see the doctor in October. If 5 mg can keep my symptoms at bay with these side effects, I can live with that.

I would be interested in what your doctor says about staying on 5 mg. My doctor didn't like that idea and dismissed it. At the age of 60 ... I was "too young" to take Prednisone for the rest of my life. However, if it was 3 mg or less maybe that wouldn't be so bad.

There are two primary factors to consider when taking Prednisone ... dose and duration. Disease control is very important but so are the side effects. Maybe if the side effects are minor it might be okay to stay on Prednisone. However, more and more research shows that even low doses of Prednisone for a long time isn't ideal.
https://evidence.nihr.ac.uk/alert/low-doses-steroids-increase-cardiovascular-risks-in-inflammatory-diseases/
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It is a personal decision between you and your doctor.

Be SURE the doc orders a bone density scan. I'd get one every six months. Prednisone messes with bone strength. Even in men.

Mike, not only does it increase cardio risk but it has some really nasty side effects.

Bone density is one. I would hope your doc has had you get a bone density and keep an eye on the bones throughout any longer than 30 day prednisone treatment.

Sounds like you have a good doc.

Thanks ... I have done a couple of bone scans. My first one was at the age of 52 and newly diagnosed with PMR. I was the only male in the waiting room so I was somewhat embarrassed. It reminded me of when I was 40 and having cataract surgery because of prednisone.

My DEXA scan was called "normal" for most areas except for my lumbar spine. I thought my lumbar spine T-score of +5 was exceptional until an MRI was done that showed too much bone. The spine surgeon said that much bone wasn't good.

I'm not sure what caused it but after my knee replacements, I developed bone in places where it shouldn't exist. Heterotopic ossification (HO) is a condition where bone forms in soft tissues like muscles, tendons, or other connective tissues where it normally shouldn't exist. Heterotopic ossification is called a healing process gone awry or an aberrant healing process.

Normally, the body's response to injury or trauma involves a carefully orchestrated series of events leading to tissue repair and regeneration. However, in HO, this process deviates from its normal course, resulting in the inappropriate formation of bone outside the skeletal system. Inflammation is thought to be the cause.

I also have Diffuse Idiopathic Skeletal Hyperostosis (DISH): This condition involves widespread calcification of ligaments and tendons, particularly in the spine. DISH can cause spinal stiffness and may elevate measurements on DEXA scans.

My entire immune system is messed up.

Since both are inflammatory disorders, can't argue with you about a messed up immune system.

My sister has GAD; diagnosed only two years ago. They had a very hard time diagnosing her.

I agree with your comments however I’ve come to the conclusion that given the alternatives and their inherent side effects I’ll stick with prednisone as long as it eliminates my PMR/GCA symptoms and try to get the dosage as low as possible. My rheumatologist has said that having to stay on a low dose (3 to 5mg) wouldn’t be the worst outcome. Knowing the pain and miserable existence that comes with PMR/GCA , prednisone and all that comes with it is a great trade off for me.