GCA conserns

While being treated for GCA first time round, I didn't feel really bad - no pains, for example - but I always felt more or less tired. It is possible I should have been on higher does of the drug for longer intervals as my CRP count, which fluctuated a lot, was always too high. I should have been out of the drug about a month ago but again my CRP had gone up. Therefore, it was decided that I should have a PET scan to try ascertain what was going on. It showed all the things I mentioned in my first post. I have now been on 40 mg Prednisolone for three weeks and in that time, I feel better than I have for a very long time - I'm full of energy and have a hard time believing I am ill. The only side-effect I have is that I cannot sleep for long but I just get up and get things done. It doesn't seem to affect my next day. I am so hoping that when I start on Actemra, this state will continue. All the best to you.

I had a mild headache, with pressure behind my eyes, from the time my (extraordinarily severe) PMR symptoms started in Jan 2023. Initially this was the last of my worries given my extremely painful 24/7 PMR symptoms. I was diagnosed with PMR 3 weeks after the symptoms started. After 4 weeks of treatment with Prednisone at 20 mg, the headache became worse, my eyes muscles started to feel quite sore, and I then developed short episodes of double vision. At that point, I was pretty panicked, and added another 20 mg of Prednisone to what I had already taken that day, and went to the ER. After a 12-hour nightmare medieval experience in the ER, during which they imaged my head, I was told there were no signs of GCA, and I had not had a stroke. The additional Prednisone I had taken had made the headache, double vision, and eye soreness all disappear. The ER doctors prescribed 60 mg/day of Prednisone. This was now March 2023. The 60 mg/day Prednisone was very effective, but had serious side effects - especially in terms of insomnia. A month later, in April 2023, I began Actemra (tocilizumab) injections and tapering off the Prednisone. After 6 more months, in October 2023, I finally got off Prednisone. I've now been off Prednisone for 5 weeks, and continue weekly injection of Actemra. So far, no relapses, and minimal side effects from the Actemra. I'm 64 years old, male, have always been very physically active, 5'10.5", 140 lbs. DEFINITELY, DEFINITELY get educated and be prepared to advocate for yourself. The doctors work for you!

My experience with GMA tells me that those symptoms are exactly like GMA. When I was at that point they put me on 60mg Prednisone for a week, then 40mg for a couple of weeks. Only then was I down to 20mg.
Be careful.

Thank you for responding. I also have a lot of energy and cannot sleep at night. My biggest complaint is that my face is swollen, and I look disfigured. Also, my taste buds are gone, everything tastes blab, and I love to cook. My rheumatologist suggested infusion therapy; she didn't say Actemra, and I said let's wait. I will be interested in hearing about Actemra when you start it.

I have GCA on 40 ml of prednisone for a month. Feeling great but concerned. What was your relapse like?

I liked prednisone at first ... it was like I didn't have any need to sleep anymore. Until I had not slept well for days and days on end that I felt like all I wanted to do was sleep.

The circadian rhythm of cortisol which controls our sleep-wake cycle is severely impacted by taking prednisone.
https://www.medicalnewstoday.com/articles/does-prednisone-cause-insomnia#link
and
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8813037/

Hello, just a small update about my health status. I met with another reheumatologist who did actions very quickly when heard my GCA related symptoms. She was very helpful and very well informed about the PMR/GCA. She organised in the hospital immadiately a doppler ultrasound about my armpit, neck and temporal area. I was told that everything is ok, all of my veins is in very good condition. Yesterday they made a full body PET CT scan, thanks god everything is ok again. My CRP and sed rate values were normal. Overall my blood work is normal.

But, the doctor told me, that based on her experiences all of my clinical symptoms point to a GCA and she raised my Methylprednisolone dosage to 64 mg (equivalent to 80mg of prednisone).

Tomorrow i will go to an ophthalmologist and next week back to the rheumatologist again and to discuss the further steps.

I am on 64 mg since 5 days. My dry cough and my headache disappeared after two days almost totally, the jaw pain is improved too.

But unfortunately i developed some new symptoms. Crazy dizziness and nausea all day long, tinnitus, burning feeling in my lower leg. Blurry vision and small focusing problems that longs few minutes to few hours. Small tremble in my arms and legs 3-4 times a day.

Did somobody experienced these kind of symptoms during the big dosage steroid treatment? Can be these symptoms the side effect of the high dosage steroid and will improve when I lower my dosage? Thanks the answers!

I could not function on 60 mg. And reducing did help quite a bit, so have no fear. A lot of this stuff will go away. Prednisone is difficult to handle, but it does make a big difference in your outcome.