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Giant Cell Arteritis questions
I have been diagnosed with Giant Cell Arteritis. I began Prednisone in January 2026 and Actemra in May. I have been reducing Prednisone and had gotten down to 10mg.
I have a few questions and need advice.
I began feeling bad again about 5 days ago, beginning with the headache. I now also feel weak and shaky. I had reduced down to 10mg prednisone and was planning to go down to 9 but on Saturday I felt pretty bad and had very blurry vision, which scared me a little. So I have gone back up to 15. Vision is better but still have a headache and weakness.
So my questions are: Am I still at risk for blindness even though I am on Prednisone and Actemra? Should I increase the prednisone further? Is it normal to have these symptoms while reducing prednisone? What should I be doing?
Thanks,
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I have high cholesterol. Not horrible, but higher than the standard. With all my other issues (inflammatory arthritis and osteoarthritis), I feel that it's the least of my problems.
Let us know how your stress test works out.
@ropnrose I had the same experience. I am a cardiac patient having had a heart attack over 20 years ago and bypass surgery 4 years ago. I know chest symptoms. Hospital ED cleared me for any heart problems. I know it was the prednisone.
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2 Reactions@tweet, yes I am seeing a cardiologist and have had all the test!! I am very blessed not to have had any damage from the strokes or blindness. I feel like I have found out so many things I didn’t know or had never heard of since I first heard about PMR. So thankful that we can find others with similar issues or concerns in this group. ❤️ Blessings!
@sandiw77 Your test came back good? 😊 I go to tomorrow for my first test. Had my Calcuim ct scan today.
Yes you were very blessed not to have any damage. You didn’t feel anything with your mini strokes? Do you have high cholesterol?
I’ve learned a lot to since discovering I have PMR/ GCA.
Take care!
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1 Reaction@tweet, I sent you a private message!
@cathie1 You need to realize that each of us is different and trying to measure yourself against others will most likely not get you where you want to be. Average or normal are simply terms that rarely apply when treating PMR/GCA or any other autoimmune problem. They have common traits but our bodies react differently. Best advice I can suggest is to ask your doctor what they are thinking would be the next 90 days for you if you are best case. Then ask where decision points are in that window. Slow and steady will help set realistic expectations. I wish you success.
A few months ago I was diagnosed by biopsy with GCA during my 2 weeks at Mayo when I was admitted from their ER, very sick. Since being home I have been tapering from 60 mg. of prednisone to my current dose of 15mg. My rheumatologist added Actemra weekly injections to help me reduce or hopefully eliminate prednisone due to side effects of steroids. I’m doing ok on taper but some symptoms of GCA are returning. They are all mild, headaches, hip pain, scalp tenderness & fatigue. My eyesight has never improved 100% even on very high IV steroids in the hospital with blurry vision, my left eye being worse. Sometimes the blurry vision is much better & lately it’s been a little worse. I have never lost sight or had white flashes. The Opthamologist thinks my glaucoma, diagnosed when I was in my early fifties 12 years ago, was worse with GCA inflammation. Probably no chance of real improvement in sight but the goal is to stop it from getting worse. Wearing my glasses more often helps a bit.
My question is regarding my returning symptoms. I need to reduce the prednisone due to the side effects so how much of the GCA symptoms is ok to accept? Mine are all mild, tolerable but is it harmful to my health? Is a certain level of symptoms to always be expected with GCA? I want to keep going with the prednisone taper & Actemra. My rheumatologist is having me keep a journal of symptoms & any changes so he can determine appropriate dosage of taper. I’m having regular bloodwork to check inflammation & Actemra effects on liver & blood clotting issue. I have a follow up very soon with rheumatologist but until then just wanted to hear if anyone else has been through this. Thanks in advance!
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1 Reaction@momac59
Difficult situation, sorry to hear that you are suffering with this. This sounds like a situation that is more urgent than routine, so I think it would be reasonable for you to call your doctor today for guidance.
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1 ReactionWe are at risk for blindness regardless of treatment. I would suggest you follow your drs orders and ask as many questions when you are with them. The downslope of prednisone is a dope sick like feeling, very much in contrast to the beginning high dosages that make anyone feel Herculean. Make yourself feel better, drink tons of fluids and rest. I give updates all the time to my dr online which I found really helpful. I started the anti-inflammatory diet a couple of weeks ago and found a noteworthy change towards feeling better. I don’t know if it’s the removal of gluten or diary but if it feels good, keep at it, right? You got this. Do everything the dr asks, really embrace self care. Hugs.
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1 Reaction@momac59 I was diagnosed in 2020, I think it's a personal decision we each have to make. For me, I'll live with low grade, even mid grade, symptoms and only break out the prednisone when I am fairly sure I'm headed for a full-blown flare-up. I get a tocilizumab/actemra infusion every four weeks, if symptoms are bothering me I'll take 10 mg. prednisone for a few days before the infusion. It usually brings relief but then I have to taper down. Since I've been diagnosed I've had cataract and melanoma surgery, I attribute them to steroids suppressing my immune system.
Good luck!
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