Hi Krueg, I was diagnosed with GCA and PMR in 2017. I was on 60-80mg of Pred for 8 months and then switched to Actemra. I went in the hospital once and my Rheum thought I had a relapse even thought the blood tests pointed to dehydration. I stayed on Actemra until Nov of 2021 when I was finally cleared. I have been clean since. Both meds have their pro's and con's. Pred makes you feel like Superman...until you come down. It also eats away at your bones. Actemra weakens your immune system so you become suseptible to other diseases and cancer. Coming off Pred I had pretty severe episodes of fatigue. I would just sleep most of the day. Unfortunately its one devil or the other.

I had difficulty coming off prednisone after starting Actemra. It took me an entire year to taper from 10 mg to zero while doing Actemra injections. I had to persevere with Actemra but eventually I succeeded. I have now been off prednisone for 3 years but I still experience mild relapses when Actemra is stopped. I currently do monthly infusions of Actemra.

I experienced overwhelming fatigue while I was trying to taper off prednisone. My cortisol level was checked when I reached 3 mg of prednisone. A low cortisol level was indicative of adrenal insufficiency as a side effect of 12 years of prednisone use.

Symptoms of adrenal insufficiency can be very similar to PMR symptoms because of muscle and joint pain. Adrenal insufficiency can also cause dehydration secondary to nausea, vomiting and diarrhea. Overall, the symptoms of adrenal insufficiency make you feel extremely ill. The treatment for adrenal insufficiency is more prednisone which improves the symptoms. Since prednisone made me feel better, I mistakenly thought my symptoms were caused by PMR.

I had to persevere by continuing a very slow taper of prednisone. I was referred to an endocrinologist who helped me understand and overcome adrenal insufficiency. In any case, I never would have been able to taper off prednisone without Actemra. I felt worse before things started to improve but it took a long time.

The first time I tapered off prednisone while doing Actemra injections I had a flare. I needed 60 mg of prednisone again but I quickly got back to a lower dose. Cortisol regulates inflammation and mediates the body's stress response. I think my flare was caused by adrenal insufficiency and a low cortisol level.
https://www.healthdirect.gov.au/the-role-of-cortisol-in-the-body
It wasn't easy to taper off prednisone even with Actemra. Since I was on prednisone for 12 years, my endocrinologist wasn't so optimistic that I would be able to taper off prednisone but I did.

"Cortisol is the major glucocorticoid in humans. It has two primary actions: it stimulates gluconeogenesis—the breakdown of protein and fat to provide metabolites that can be converted to glucose in the liver—and it activates anti-stress and anti-inflammatory pathways."
https://www.britannica.com/science/cortisol
My rheumatologist thinks my being on Actemra is better that being on prednisone for the rest of my life. I like being in remission.

Actemra does have side effects and risks involved. My rheumatologist monitors those things closely. The nice thing about Actemra is it doesn't cause adrenal insufficiency so there is no need to taper off Actemra slowly. Your PMR/GCA symptoms may gradually return when Actemra is stopped. You might need some prednisone but not forever if Actemra is restarted again.

I feel much better being off prednisone. Someday I hope to be off Actemra too. Try not to ever lose hope! My only worry now is about the possibility that Actemra might stop working but that is another topic for future discussion.

Thanks for sharing. I'm so glad you finally got if Prednisone. I hope I'll get there one day🤞

I am so sorry that you are having so many problems. My thoughts and prayers are with you. But don't give up hope.

I haven't had experience with taking Actemra, and was turned away by Mayo Clinic because I live out of state (if they take you on and appointments are far out, ask about televisits, they may be sooner). This month I have an appointment with Penn Medicine in Philadelphia which is a lot closer to my home (still 2 hours away but worth the drive).

My PMR symptoms started four months after I recouped from Covid (if you want to call it that; I have never been a 100% since) that I caught in February of 2020 when it first came out. I was sick for months but refused to go to the hospital (people were going in and not coming out). Suffered for 3+ years with severe pain, had multiple testing, and finally was diagnosed in August, 2023 with PMR. As of now, I still only have PMR, but I feel like it is, for the most part, under better control.

LIFE CHANGING moment was when I discovered that MOVEMENT caused my symptoms of my PMR to reduce dramatically in the morning and a lot faster (pain, stiffness, fatigue, nausea, etc.). I found meds did not give me the same level of relief, but they did help. Although I am waiting to be put on Kevzara within the next several months, I decided that I would make a lifestyle change. I eat clean and walk everyday through rain, sleet, snow, etc. (like the mailman, but within reason). In order to help keep my anxiety at bay, I do at least one thing a day that I enjoy that brings me happiness (even if it is just one small thing). Yes, I have "recess" as an adult (remember when you were in elementary school and you use to have recess after lunch that you look forward to, well that's what I have now for me), AKA "me time" but it can also include other people, your pets, etc. The night before, I usually make myself a short list of things I "have to get done" for the next day, so that is already figured into my next days schedule. REMEMBER, you don't have to start out big, I didn't. I had very little energy and would only last 10 to 15 minutes and then had to take a nap because of the fatigue and being really out of breath. I had to work up to where I am now over months and months period of time. Just do what you can, and soon you will be able to do more and more. All you need to do is think of that one fun thing you would like to do that would make you really happy (like a reward; I know it sounds silly but it'll make you feel good!). For Example: Last night I decided that today I need to process all medical claims for my dogs, pay my bills, help my daughter straighten up her room, take care of my husband that is Covid positive since Monday (he is in quarantine), etc. The one fun thing I decided to do today: Bake cookies for New Years with my daughter, even if it is only one batch right now. If I can do more, it's a bonus! I have a new recipe for eggnog cookies that look amazing; I love baking and spending time with my kids, so this is a win, win for me!

It is too easy to mentally feel lousy when you physically feel lousy; they both seem to go hand in hand. However, even if you can't get much done in a day, make sure you make the time for that one important thing for yourself that makes you happy or makes you laugh. I have found that this is the best medicine.

Thanks you for your response and encouragement. My anxiety level is off the charts since I've had this crap. My mind never shuts off it's really exhausting. I too find exercise is extremely helpful. I walk 2 miles almost everyday and started yoga about s year ago and absolutely love it. Never too old to try something new as the saying goes. Thanks again and i wish you luck in your journey to remission