Is it PMR?

Terri. After being at this for some many years, you know they may yet change or they might just be adding Dx’s.
Of course with auto immune diseases we often end up with multiple diagnosis over time.
I started with PMR, immediately added GCI (Giant Cell) eventually they did add 1 or 2 more Arthritis forms.
Wish you wellness and the ability to find joy in the experience of the everyday.

@shoregirljill

"I started with PMR, immediately added GCI (Giant Cell) eventually they did add 1 or 2 more Arthritis forms."
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So true!!! I started out with reactive arthritis with uveitis about 15 years before PMR was diagnosed. When PMR was diagnosed I was naive to think that my diagnosis was being changed. I asked my rheumatologist what happened to reactive arthritis thinking maybe it was gone and PMR replaced it.

Subsequent to PMR being diagnosed there was degenerative osteoarthritis and gout. At one diagnostic review at my rheumatology visit I learned the I had the "full range" of rheumatology conditions and it would be impossible to adequately treat everything.

I stopped worrying about what diagnosis I had. Apparently my inflammation pathway is driven mostly by the IL-6 cytokine because Actemra works really well for me.

@leighton68 flu like symptoms when taking Kevzara? If yes, which symptoms?
I’m about to start Kevzara so I’m doing my best to be informed. I hate flu like symptoms.

@stonewheel I haven't taken it but some have described it like having the flu. I tried methotrexate and that was worse then the flu.

I’m sure I’ll end up on infusions eventually, but since I had a traveling Rheumatologist doctor change my diagnosis and take me off Methotrexate and prednisone and put it was chronic pain syndrome, (after a 7 minute appointment and no physical exam) it put me back to square one. I had to let my symptoms become severe enough to affect my hands and put me in bed to finally get imaging ordered to diagnose me.
I do feel a little better after two days on 5 mg prednisone and 10 mg leflunomide. I’ve been considering trying CBD lotion or a roll on.
Terri

@rocksology I too had a floating rheumatologist, when his replacement came in, she undid everything he did changed my diagnosis and tried to put me on different meds with out looking into my medical history and all my other conditions! So frustrating! The medical community is a hot mess right now! And those of us with conditions suffer

I decided a couple months ago to give up and stop going to any doctors. The gaslighting from specialists was destroying my mental health and doing nothing for my physical health or pain. It lasted less than 2 months. My hands became crippled starting with trigger finger and then they turned to claws. An MRI was already scheduled and Seronegative RA was the diagnosis. I haven’t seen anyone about that diagnosis, only spoke to the Rheumatologist on the phone to start meds.
I saw an Orthopedic surgeon which was the scheduled follow up on the MRI and she said I have a perfect storm going on with synovial fluid, some joint damage AND severe carpal tunnel from the swelling in my hand and carpal tunnel. She is going to go in to release the trigger finger and do the Carpal tunnel release. She is concerned my right middle finger will never be able to fully bend again.
She’s the first doctor in over a year who has been helpful. I couldn’t thank her enough.
Terri

@rocksology

My analogy for having inflammatory arthritis and PMR was like a hurricane. If I took enough prednisone, I could mostly stay within the eye of the storm while the storm swirled all around me. I had to hunker down when prednisone introduced some additional swirls. Prednisone wasn't quite as bad as the hurricane but close.

My doctors were more like my lifeline. They prevented me from being swept away so I would recommend staying in touch with them. My doctors weren't in the hurricane but they managed to pull me out of it.

@dadcue thank you for sharing your experience. I first got PMR in 2021. On prednisone for 20 months and then 3 years in remission . Started back on prednisone this March for PMR. I’ve noticed now though having pain in my hands and knees. Last visit to my NP said I may be developing RA or psoriatic arthritis. I’m concerned about going on a biologic, but it would be great to get off prednisone and I need to be open to other better treatments..

"He triggered my medical PTSD and I refuse to see him again as he messed with my head for weeks after my appointment with him."
Mine too, a grouchy old narcissistic rheum who wrote, and hid, a very disparaging note about me. Make sure you request medical records and consult note!
Now I'm making them legally amend my records which included the note I wasnt allowed to see. They are legally required to respond in 60 days by attaching my amendment to the original unprofessional note. He could be accused of "Information blocking" ( I wasnt aware of the note for 9 months while its embedded in my Medicare records), Patient Abandonment" refused to diagnose or treat me without referral to someone else,
There are consequences if they do not act in 60 days.