PMR - possible diagnosis

Hi. Welcome to MayoConnect.
I’m not a mentor, tho I expect one will check in sometime soon. But I do have RA that had a very sudden, PMR type onset, involving shoulders, hips, knees, ankles, but also hands and feet. . I was also Seronegative for RA factoring that time - though I am seropositive now, with more typical RA symptoms.

What was your symptom onset like?

Onset was a huge, inflammatory flare that came out of the blue. At first I thought I was just sore from overdoing it on several projects.

My hands were somewhat impacted - but mostly my shoulder joints and hip girdles. I could barely stand up or move my arms. The pain and stiffness eases a couple of hours after waking.

I had to beg my PCP for a second round of the 6 pack of methylprednisolone. It's a 6 days, tapering course of medicine, that works! He is cautious, rightfully so. A friend took me to my standing 6 month dermatology appointment last week and my doctor took one look at me, and gave me the prescription for Prednisone - 30mg every other day. I could see his intellect trying to solve my malady, asked lots of questions. He too thinks it's PMR. He also has his PHD in immunology, so I trust him. His compassion was overwhelming.

This forum is great, I don't want to bore my concerned family and friends, but I need to vent and to get some answers.

You sound like you have it far worse. We say "lo siento" in my part of the country = "I'm sorry".

I woke up one morning with a numb achy hand and thought I’d slept on it funny. I had just moved to NYC for a new job and had a new boss to impress! It faded away in an hour or so but the next morning both hands were numb and achy. Over a couple Of days it progressed to a point where my ankles felt fused and my hands were so painful and so weak I couldn’t open a door or even a bottle of water. And then the large joints became involved - hips, shoulders so bad that rolling over in bed was excruciating. I was given a 16 day course of prednisone: 20 mg x 4 days, then 15 x 4 days, then 10,
then 5 then off. Then the Rheumy my new boss secured via executive health put me on Humira. I had a rather miraculous response and have been largely well controlled. I had to change drug 3 times but my Remicade is great for four years now. I’m lucky I stumbled into a great Rheumy in NC. I did just have a flare I took another prednisone course for - I try not to go there but it’s the only answer sometimes.

You know having a dermatologist wirh training in immunology is a great, great stroke of luck!!

I know! And, i'm thankful that my friend insisted I keep the appointment.

I had a much merrier Christmas than I would have otherwise.

If you have someone skilled and engaged with your issue you are one lucky gal.

Sounds like you were on the right track. And getting a diagnosis early is huge. People struggle for years without getting the appropriate diagnosis. I’ve had PMR now for a year and a taper down to 7 mg of prednisone from 40. Mine too was very sudden onset. Came on after a very bad flu that lasted about 10 days. One morning I woke up and could not stand on my legs. My hips and thighs and lower back were all locked. Very scary and it happened on 23 December which meant getting help very difficult. Luckily my internist was on it and got me in to see her on the 23rd and I was on prednisone before Christmas. Currently things have relapsed and I’m back up on 30 mg of prednisone again due to a bad flu virus combination. But I am now on a biologic which is a whole line of medication that helps get you down off the prednisone and targets the PMR in a way the other things do not. Mine is Kevzara. One thing to keep in mind is that they really do not know a whole lot about PMR. And my rheumatologist often says things like well. You don’t present classically. Or this isn’t a normal presentation. But the one thing I’ve learned about being on here is it every single person on here is a bit different in how the PMR presents, how it starts, and what helps. Diet is big for most people. As is continuing to get some kind of exercise to keep things limber and moving. Sugar and stress are two huge triggers for me.

Thank you for your comments. I've just read about Kevzara, looks like a good alternative to Prednisone. The internet and this support group have been great sources of information. I am realizing that there is not a lot of research out there as you said.

I found a Rheumatologist on YouTube, Dr. Elizabeth Ortiz. She is very knowledgeable and easy to follow.

I am looking forward to meeting the Rheumatologist, he is new to our area, been in practice 5 years, so he has some experience couple with the latest technology, My dermatologist says that he's sharp.

My PCP and derm are guessing I have PMR, my blood tests show high inflammation and have ruled out RA and some other diseases. Plus I "present"
as you say, in the normal, classic way. I fit the profile too, I just turned 70, am female, and am of northern European heritage.

I think diet, acupuncture, and swim therapy will help whatever I have. Prednisone for now is a life saver. I've always been active and somewhat diet conscious - now I will be hyper vigilant!

Your tale of getting the flu scares me - the last thing we need is to have another ailment.

Have you tried meditating to alleviate stress? Sometimes just sitting quietly with eyes closed for 5 minutes is enough to "reboot" and redirect your energy to a more positive space.

I'll close with lo siento - I am sorry and wish you well!

When I read your your history I knew you would do well managing
with PMR. You are doing everything appropriately.Your risk for side effects
from steroids will be minimized with your lifestyle and compliance.
I was fortunate to get diagnosed early as I had a family history of PMR.
My anti-inflammation routine includes D3/K2, turmeric, melatonin, vitamin C,
gluten limitation, pure stevia in place of sugar and low dose statins for mitigating the atherosclerosis with autoimmunity. Stress reduction and meditation important in my day as well. Off steroids for several years after
very slow weaning. You have a great plan.
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You have made me feel so much better. I appreciate your comments soooo much.

This malady is entirely baffling. It's been 2 months, and when I occasionally feel almost normal, I get hopeful that it will be short lived.

I sure have learned PATIENCE - that's never been my strong suit.

I'll add K2 and melatonin.

Thank you!