Reaching the goal line……

November 2025 was my three (3) year anniversary of being diagnosed with PMR. Initially I was put on 40 MG of Prednisone for the first four weeks and then reducing by 2 MG per month, then in July 2025 went to 20 MG and reducing by 2 MG per two weeks. Had a spike in issues in September, went back to 20 MG for a month but since then I have been reducing steadily and now am down to 3 mg daily and have never felt better in past three years. I have recently been diagnosed with Chronic Lymphatic Leukemia and will meet with the Oncologist next week to find out his opinion and course of action. My blood labs show marked improvement in several areas and I hope and believe January will be the last month I will take Prednisone. I had two back surgeries last year, the first lower back fusion went oK but the surgeon did not want me to do any PT for 3 onths following the operation. That was a mistake on his part and a mistake on my part for following his direction. In July I had a Cervical disk fusion needed from a bad bicyle accident in 2012. The fusin went very well but I developed a hematoma in my trachea and had to have emergency surgery, 5 day ICU and 20 day in hospital rehab to be able to swallow food.Since then a lot of rehab to gain strength to walk but my lower back is still a pain issue. Water Therapy has really helped to address the strength and pain (along with a nerve block shot). The CLL is the complicating factor now. But Prednisone reductions are going smoothly and to that I am loving this New Year.

@maye33
And a Very Happy New Year to you, my “anniversary mate”.
May the good vibes/work stay with you in 2026.

PS: interesting note, my Rehumy had me taper dose of Kevzara to every 3 wks to get my WBC and neutrophils back in line. It worked, now……
He wants me to GO BACK TO every2 wks Kevzara.
All thru patient portal.
Never asked how “am I doing, etc..” and come into office for nxt blood work. 🤔
Maybe a “bot” is doing his work, because no one has read my chart.

Sorry this is long……my reply
“No, I don’t come to your lab.
My car was hit there.and it’s a 40 min ride each way.
I have done the last several labs at Sonora quest nr where I live …since April 17, 2025
Pls ask Dr to chg that.

DR, why do I NEED to increase the Kevzara?
I have been on Kevzara 3 weeks apart since 10/22 with no side effects, and my blood work was good on 12/17.
The CRP has not changed since April 21, 2025
The SED rate has not chged since Oct 31,2025.
I have not felt this good in 2 yrs. I take no other drugs. I feel so good that I don’t even know I have PMR 95% of the time.”

What’s wrong with this picture? Not a good start to the New Year for communication, maybe?
Stay tuned.

Congratulations!!

You are an encouragement to all of us who are still struggling! Keep up all those activities. One day we will get there, too!

Question: I was on Kevzara and it tanked my blood count numbers. Then moved to Humira which didn't help at all. Have also been on prednisone (not again) and methotrexate. No pain relief from any of them. What other meds besides Kevzara were you on? I asked about Rinvoq but because it is black-boxed, doctors will not prescribe it for me. Last night I had symptoms of GCA and will be checking in with a new opthamologist.

Any ideas for pain relief?

@tweetypie13 that’s wonderful you’re feeling so well and are so active 2yrs post pmr diagnosis.

Your Rheumatologist is the opposite to mine . His mantra is
“I treat people and not numbers” He’s more interested in asking about my wellbeing & quality of life. Pathology usually ( but not always) aligns with symptoms anyway.

A person feeling well is likely to be well and vice versa . Constitutional symptoms are at least , if not a more important part of any rheumatological diagnosis.

I’d say you are on the right track questioning “the patient portal”
What could possibly go wrong when human contact is removed from medical consultations??

Here’s to staying well in 2026 and our parallel diagnoses. So far so good.

@maye33 where are you located? DR sounds terrific.

@tweetypie13 ( my anniversary mate ) unfortunately I’m not in your neighbourhood, I’m in Sydney Australia.

@tweetypie13 ( my anniversary mate ) unfortunately I’m not in your neighbourhood, I’m in Sydney Australia.

@maye33

I was in Sydney, Autralia in October of this year ... sorry ... last year 2025. Happy New Year! I saw more Australians in one week in Sydney than I saw in my entire lifetime!

There were lots of firsts for me:
First time crossing the equator on a cruise ship
First time in the southern hemisphere.
First time crossing the international date line.
First time being in Australia.
First time feeding and touching a kangaroo.

I could go on and on. I loved every minute of being in Australia. I live in the middle of the United States. I have crossed the Atlantic Ocean to Europe many times but never crossed the Pacific Ocean to Australia. I have to say Australia is currently #1 on my list of favorite places and I hope to return to Australia some day.