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

Hello~I'm so happy to have found this group. When I lost the sight in my left eye and was then diagnosed with GCA in 2019, I was at such a loss for information of any kind. Was this group around in 2019? I found a support group for PMR/GCA in England under Health Unlocked, and today one of the members steered me here; I'm thrilled. I'm now down to 3 mg per day from 80 mg of methylprednisolone plus Actemra initially and could never get below 40 mg until the first of this years. So far so good except for the usual fatigue and stamina issues. Of course, 3 years of prednisone has left its mark but it also saved my sight. I considered the side effects part of the treatment~! So happy to have found you....💞(my trademark)

Welcome @grammy82, I'm happy to hear you found Connect also and it's great to hear your treatment saved your eyesight. I'm not sure exactly when Connect was started but I think it may have been 2011. I was happy to have found it in 2016 when searching for neuropathy information. The PMR and GCA discussions came in handy during my second flare of PMR in 2016 also.

Health Unlocked also has a wealth of information and was quite helpful for me when I was tapering off of prednisone. I never developed GCA but was always watching for possible symptoms.

We recently updated the search function on Connect so if you are looking for specific topics or trying to find questions, give it a try at the top of every Connect page. There is also a discussion search function on the Connect home page where you can click the search just above the list of discussions highlighted and search just for discussions containing a keyword.

@tsc and others might have some suggestions or tips for the fatigue and stamina issues associated with treatments for GCA. Is the fatigue or stamina the main side effects you have now?

@krueg I’ve heard the question about probiotics and autoimmune disorders. Here is an interesting article by the National Institutes of Health. It says that probiotics can help in some cases but that more research needs to be done on safety.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6213508/
I don’t believe it said which yogurts are more effective and that would be interesting to know.
Did you find anything of special interest in the article?

Hi @grammy82, so glad you found us. I think the PMR/GCA group at Mayo Clinic Connect is particularly robust. I found it by Googling PMR and GCA shortly after my diagnosis. Before I was diagnosed with Giant Cell Arteritis, I was very fatigued. That was due to anemia, caused by the disease. It's called the anemia of chronic inflammation. I was prescribed 40 mg of prednisone a day in the beginning and it resolved the anemia. The prednisone gave me lots of energy and made it difficult to sleep at night. I've been off it now for about seven months. I have enough energy to get through the day, but I don't push myself to do everything I possibly can. One thing I've learned from being in this group is that those who push themselves too hard can get flareups.
My mother-in-law was diagnosed with GCA in her late 80s. It did deplete her. She went into a nursing home, but became President of the Resident's Council and served for many years. She told me that living there was the experience of her lifetime. She died two months short of her 100th birthday. There is lots of life to be lived after GCA. I wish you the best.

One of the reasons I believe groups like this are so important is to give people support...to let them know that first, you are on a roller coaster with an autoimmune disorder....then secondly, your body is on the same ride because of the double edge that prednisone presents. It has been three years for me with GCA on both prednisone and Actemra. The important thing is there is light at the end of the tunnel...and you are never alone on this journey as long as you are part of this support group. I could never have made it...or been an informed patient if I hadn't been part of a group in England. I just found this group today and am thrilled. I was diagnosed at one month from age 80 and I was so active. It does change your life for sure. I actually held a mental funeral for my old life, I had to stop...listen to my body and hang on for the ride. It seems things are settling...still on some pred and probably will take Actemra to my grave...but that's ok. Remember, you can and will get through this. Please, don't overdo and listen to your body....rest. My best💞

I take Actemra weekly injections, like an EpiPen, along with my Prednisone. I was diagnosed in August of 2019 and got pred infusions for three days and then pred tablets. My rheumatologist added the Actemra in October of that year. It has taken a long time, and I've experienced many ups and downs....like we all do. It is so difficult not to get anxious, especially when we feel so tired. I finally gave in and did my best but I knew the old days were gone. It takes time and be kind and forgiving to yourself.
Throughout my experience, ongoing, the prednisone has elevated my BP, cholesterol, and sugar...but it is stabilizing along with a 'hand up' with some meds. At one point, I was offered Metformin "if I wanted it" and I said no thank you.
Sometimes it helps me to think of the side effects as 'part of the pred cure'. I hope it helps you. I've been on Actemra for three years and am now down to 3 mg per day....but I didn't get to single digits until this spring. So...just know there is hope. We are not alone in this.💞

In my three years with GCA as my partner...I'd not heard anything about probiotics. There is always something to learn. The group I belong to in England frequently talks about taking prednisone with yogurt to minimize stomach upset. I had a history of ulcers and even bleeding ulcers when younger. My doctor prescribed sucralfate three times a day. I have had no nausea or stomach issues at all...it has worked for me.
I started with 125mg per day to protect my right eye, I believe, because I had been misdiagnosed for nine months. In October of 2019, I was put on weekly injections of Actemra and 80mg of methylprednisolone. It took me until the spring of 2023 to get to 10mg...now at 3mg along with Actemra.
💞

Thank you so very much, John; I really appreciate that information and your note. I don't spend much time looking over my shoulder, but sadly did not find you and this group in 2019 when I seemed surrounded by people that never heard of GCA. I'm just glad I'm here...I know how bleak it can look when you are in the dark....but people do get well, and it is so important to know that.💞

Thanks for the info. I've read some articles that claim it is helpful but some that don't think it's helpful. It's good that it is being looked at though

Fantastic you are really doing well with your taper. It is great to see you get so low on the Prednisone. This is a battle i NEVER thought in my life i would be dealing with. This is a terrible disease and i am so glad to have found this forum to listen to others experiences. Thanks to all