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

I was diagnosed with PMR when 72. It came as a big shock as I was [I thought] healthy and active for my age. The pain in my shoulders and hips was excruciating and I had never experienced such fatigue. By 11am I was back in bed for about 2 hours.
Now down the track in 2023 I am recovering { I hope] from LCA which was diagnosed last August .I am now tapering from prednisone 60mg and currently on 7mg. It has been such roller coaster ride with several side effects from the prednisone. Muscle weakness, decreased appetite , fatigue, foot neuropathy, atrial fibrillation, lumbar stenosis ,the last three only developing after the prednisone dosage started. My doctors tend to deny this possibility but for me the coincidence is marked. I realise that now at 80, some of these problems may have occurred anyway but as I say the coincidence is there.
I try to stay positive but my life has changed so much. I can't even walk our much loved pup, something which I really enjoyed. My physical fitness has deteriorated to the extent that I can.t walk 100m without becoming weak in the legs and somewhat breathless. I am almost housebound although thankfully I am still driving.
So I tell myself that this is my new life and I must make the most of each day as much as I can. I live in a beautiful part of Central NSW , Australia, with mild summers [because of altitude], cold winters and the best Autumn and Spring.

It is wonderful that you are embracing your new life. I'm now 61, but with my PMR symptoms I was sick for over 3 years (3 years, 2 months to be exact before I received my diagnosis). I felt really really old, even ancient, and always in excruciating pain that was incomprehensible. Couldn't do anything with the family for more 15 minutes. I have also been through my share of illnesses (cancer, etc.). But isn't it amazing how we just pick ourselves up and shake ourselves off and continue to appreciate everything good that comes our way. Now that is living.

Prior to my GCA diagnosis last August my husband and I had a difficult time involving the death of our beloved mini schnauzer Darcy and a big, necessary financially decision to relocate . We are 80 and 90 years old . It was a very emotional time as we were leaving friends and family . It is a 4 hour drive to visit .No sooner had we moved into our new home and become parents to a new pup, then I had this diagnosis. Now I suggested to my DR that my immune system could be compromised because of the big life changes but he said "no". I still wonder though.

I was diagnosed with GCA in 2020 and put on 80 mg. Do Prednisone ( which, by the way, saved my eyesight). Along the way, I got PMR. I am now down to 12 mg. It has been a rough ride with a heart attack and anemia added into the mix. But, I am still kicking!!

Hi @valerie6062, I apologize for repeating myself, here, but I'll leave this post as is.
I think you make a valid point. I can't imagine the heartache of losing a precious pet, then managing a drastic move and relocation on top of that.
There are genetic markers for PMR and GCA, but, there has to be something to cause the immune system to go into overdrive and attack the body. My mother-in-law came down with GCA after returning from a long road trip that involved a family reunion, my maternal aunt got symptoms after injuring her back, and I had an ankle injury first, then pain and stiffness throughout my entire body a few days later.
I've read that injuries and/or stress can aggravate the immune system.
I wonder if everyone with the genetic markers, most common in Northern Europeans, and especially Scandanavians, develops PMR and GCA.

I didn't bring genetics into my original comment but you have triggered a memory. My sister had her DNA done and yes she and almost certainly me have N. Euro and Celtic/ Scandinavian markers.

Stress is definitely a factor. Had PMR for 6 years, down to 2mg of prednisone and doing fairly well. Had issues with hunters last fall shooting ducks on a common lake that I had bought and raised from eggs. Having armed men 3ft off my shoreline killing my pets threw me mentally and physically over the edge. I've weaned from 60 to 19mg since January, dealing with several side effects, taking 3 new prescriptions to deal with that. The sad part is hunting season has started again, so the dread of seeing the duck blind out the window has begun. Hoping to avoid a recurrence.

Of Northern European background. I had a lot of stress from life changes before this came on. Sometimes wonder the same thing…..

I was diagnosed with symptoms of GCA in April of 2023 with blood test results. I did not go under a biopsy because my Rheumatologist stated it could come back with a false negative. I was prescribed the weekly injection of Actemra and 60mg of Prednisone and have tapered back /forth due to temporal headache and tenderness. Currently I'm on 30 mg and having sleep issues with being jittery/shaky. Has anyone experienced these reactions. I do take my supplements of Vitamin D and Calcium and presently on a blood thinner too.

I have pmr (diagnosed May of 2022) and gca (diagnosed Sept 2022) and was on high dose prednisone for months. I receive infusions of ACTEMRA and did experience a major relapse this past April and had to go back up to 50 mg but am now down to 14mg. Sleep has been very difficult for the past year but I am finally starting to sleep longer now that my dose is lower. Hopefully you will find that as you taper down. I have not experienced the jitters or shakiness that you have. I take supplements vitamin d, calcium, vitman k and magnesium to protect my bones from the prednisone. I wish you luck and hope you can continue to taper down and resolve your sleeping issues.