GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica)

I've was diagnosed with GCA a few months ago and also have the pain in my shoulders and arm. I just started taking Actemra with Prednisone. I've had headaches and blurred vision. My Rheumatologist will try reducing Prednisone dosage because of long term side effects due to other health issues. So far so good with 3 injections of Actemra. Wishing you luck!

@nyxygirl
I saw your message before I saw this. I'd be very interested in helping in anyway possible. We suffer from a lack of information about these diseases and alternatives for people in getting the best treatment possible.

I'm curious...is the boss yea or nay on the prednisone? We all know the side effects but also the alternatives. I'm interested.

Life is rather rushed now because I'm heading to Canada to see my granddaughter graduate from high school with honors....and then to Maine to visit my old buds.

Please keep me on your radar...I'll be back July 11 but will be around until June 22. OH!! I miss my forums.
💞💞

I'm right there with you....go slow, sometimes it takes a while for the pred and Actemra to work in concert.

Did you know the pred can give you blurred vision...but it will be temporary. The goal is to manage your disease and not rush to get off anything. I'm wrapping up my third year of pred and Actemra, and it took me two whole years to get to 10~~I was up and down like a yo-yo.
We do get it managed and under control, but please do not risk doing yourself permanent harm. Be patient💞 You are never alone!!

More and more doctors are leaning toward maintenance doses or keeping you on Actemra to avoid a costly flare..💞never worth it.

As of right now I am taking the Actemra with 20mg daily of Prednisone. So far so good but developing flareup of itching with my eczema. I'm wondering if anyone taking Actemra or Prednisone has developed any side effects.

I would check with your rheumy.....I had cellulitis early on and they took me off the Actemra for a bit. I don't have eczema, but I do find my legs itch...never really attributed it to Actemra. I use an anti-itch lotion that quiets it down. I think the rheumatologist will be able to tell you just the right thing to do. By the way, I was off the Actemra for six weeks....no issues stopping and restarting....I'm scratching for you. I know Actemra can exacerbate skin conditions. xo💞

Yes. Sometimes, after taking Actemra for a while your body begins to reject it and can cause hives. I had a very bad breakout last summer from something and my Rheumatologist thinks it MIGHT be a reaction to the Actemra. Prescribed OTC Zyrtec (or similar) the day prior, on, and day after my injection. I usually wait until I see if I need it and then take just one. Most of the time, my skin has been sensitive since taking Actemra, but I can usually control it by a topical application of a lotion containing aloe. I know my body reacts somewhat to the Actemra because, once in a while, I get a small itchy bump at the injection site. I've been on it for a year and 8 months. Reaction started about 8 months ago. Prednisone has too many side effects to list. High blood sugar, swelling legs, overall cushiness to name a few.

I have PMR /GCA started out at 40 mg prednisone and now at 20 mg. Was wondering why everyone here is doing prednisone and acterma together. My rheumatologist said we can consider acterma if needed??? Not sure what that means. I am tapering very slowly on prednisone 5 mg every 3 weeks. Had blood test yesterday and inflammation markers were GREAT !!🙏❤️🙏

Prednisone controls inflammation but has side effects bone loss etc Actemra is a biologic alternative,less side effects. Once you get to 5mg of prednisone reducing by 1mg every 2 weeks worked for me. I have maintained good blood test results since being on Actemra only since
Oct 2021. I am now at 14 days per dose working on reducing to 21 days.

I can only speak to my case...my GCA diagnosis was missed for over nine months, and I woke up in 2019 blind in one eye, with no pain. So my case had a running start, and I had some damage to the optic nerve in my other eye. I started on 125 mg of prednisone per day...I was never given pulse IV therapy at the hospital. One month later, I was put on 80 mg methylprednisolone plus Actemra. The rheumatologist was reluctant to start me on Actemra because I'd had two diverticulitis attacks and two previous stomach bleeds. I was cautioned, but I chose to start it to try to save my other eye.
My present rheumy has described it as 'a steroid sparing agent', believing it would help me get off the prednisone faster. For three years every time I got near 20 or so, I would have a flare. In February of this year I got to 10 mg and now take 3mg daily with my Actemra injections weekly.
I'm 82, almost 83, and he told me if I get to zero, he is going to keep me on the injections. I also see a neuro-opthalmologist regularly to monitor my right eye.
When you take Actemra, your inflammatory markers are always normal ~ you have to be treated symptomatically. I've been fortunate all in all because it will be four year anniversary when August rolls around. But..I still have my right eye.
So it is a pretty individual thing; we are all unique.💞