PMR/GCA things that helped

Good morning!
I have found so many of what you mentioned also works for me.
I’ve had lupus, Hashimotos & diabetes for over 30 years. I’m 67 now.
I got sick in March & went to many different doctors & ER visits with no one being able to figure out what was going on with me. I continued to get worse until my husband said , “enough! “He was so worried that he drove me to the Mayo Clinic ER here in Phoenix. They admitted when the other hospitals wouldn’t, telling me I was seriously sick & they were going to figure out my medical mystery. I cried in relief! And they did as promised. I was in for 2 weeks in an autoimmune firestorm. Biopsies of temporal arteries showed GCA. I’m so lucky my eyesight, though not great but ok. I have been doing good in my recovery with prednisone, which I am tapering down from & Actemra. Still have some symptoms like daily mild headaches, some hip pain, fatigue, etc. but SO much better than a few short months ago.
Following an ant/ inflammatory diet had made such a big difference as well as chair yoga, breathing exercises & pulling back from busy activities to be more serene & happy quiet. My artwork puts me in that lovely space, as do my sweet dogs.
So I credit the wonderful doctors at Mayo for diagnosis & treatment but I know I have to do my part as well!
Good health to all, one day at a time.

@momac59 oh I’m so happy to hear this! It was unnecessary in the beginning, a true crash course in the dysfunction of our health institutions. I know on one visit they thought I was a psych patient, nothing was showing up for the pain! I just turned 60, am wondering if there will be peace made with this disease, or does it own me? So far, no flares with GCA. Only PMR, which has come on after vaccines or exposure another source of viruses, usually following a gathering of sorts. Have you noticed anything seasonal by chance? I seem to feel worse in the late summer.

Yes, my spring allergies, especially trees and in late summer, ragweed, really mess with my immune system, setting off flares. Every big flare over the past 30 years had been in Spring. So many with autoimmune diseases that I’ve talked to have allergies & are weather sensitive. Even a change in barometric pressure made my joint/muscle pain & fatigue worse.
I get nervous when flu season starts. I never seem to get a simple cold or flu. Mine always seems to set off a flare. Some thankfully haven’t been too bad but there have been years where it has taken months to recover. COVID landed me in the hospital 5 years ago & I have had long Covid ever since. It kinda feels like an on & off Lupus flare. But this GCA/PMR is still new & much worse than my lupus in many ways. I’m feeling better though & can only hope any flare of that one is not bad. No guarantees but can’t worry about something I can’t control. Stress only makes everything worse. All I can do is take good care of myself & hope for the best because that’s what living with chronic illness is unfortunately.
I wish you the best!

@momac59 I find it very scary and disappointing that some doctors have such difficulty diagnosing PMR. Soon after mine started I Googled my symptoms and it said PMR is what I likely have. I went to my GP and told him I think I have PMR, and after hearing my symptoms he had me do a blood test, and he gave me a prescription for 15mg Prednisone without even seeing the blood results. I had a CRP of 88 and ESR of 55 so sure enough Dr Google was right.

Thanks, Michelle!

I'm curious about dietary changes. I'm assuming that the Mediterranean diet is the way to go. Does that sound right to you? My two vices - I like different kinds of cheese (not processed, of course) and red wine. I'm wondering if I need to surrender my red wine. I usually have a glass with dinner on one afterwards.

Any thoughts you have are very welcome. I have moderate PMR and I'm on 15 MG daily of prednisone, down from 20 MG. It has helped enormously, but I do notice some side effects: a slightly "heavy" heart pulse (it pounds a bit) and rockier sleep. I work out regularly and do lots of cardio ... but the achiness of PMR is still with me, mostly in my hands. It feels what arthritis might feel like, but I don't have arthritis (per my doctor).

Thanks again!

Michael

@retiredphil
I had to figure out my PMR as well. Through "Brave" browser searches. It wasn't until my PCP NP did iron saturation tests along with CRP, ESR and Ferritin that I got the PMR info from Brave Search. Plugged in my lab results, my waking up at night with severe pain in shoulders, upper body etc,etc and PMR and one other disease came up. It was the PMR that matched. I took info to my NP and asked her for other blood tests to confirm like IL6 and a few others, but she also said Ultrasound.
I had an appointment I'd made a month or so previously to see a Rheumatologist just in case, but it was still about a month away. I called the Rheumatologist office and asked to get on cancellation list and explained I might have PMR and lab results. Next AM they called and got me in the next day. Sure enough she said PMR and set up Ultrasound for next day which confirmed it and ruled out GCA. You said it, Google/Brave etc can be very good at being
Doctor like, especially with information about things that are so wierd and hard to figure out. It is sad that so many Dr's haven't heard of it. We really do need to be our own best advocates with health care. These days especially!! Blessings everyone.

@mjdcl57 I don’t see issues with your vices as long as it’s in moderation. The gut is where inflammation begins, it’s always the source which needs the most amount of attention. Probiotics, yoga or thaichi, Mediterranean diet are all really good