PMR at 48 yrs old

Interesting Julie. I’m not an expert, but when I read about PMR and RA one of the classic distinctions (that I read) from a “symptom” level is when pain, discomfort, lack of mobility occurs. With PMR it is earlier in the day, whereas RA is the later in the day/eve it is worse. It was one of the observations my docs considered when giving me a diagnosis, since my blood work was not “classically” PMR. Also the bilateral immobility/pain is also a PMR symptom. Is your pain worse in AM or PM?

You have my attention. I am a woman in my mid 60"s. I have Sjogrens. My whole family is fraught with RA and a whole host of other autoimmune conditions. Over the years I never had my blood work definitively show a diagnosis for many mystery symptoms. But one morning in early August 2018 when I had been feeling great, happy, spectacular weather, I woke up and couldn't raise my arm. fine when I went to bed! Few days later woke up and couldn't raise either arm. I tried to tell my doctors it wasn't a normal pain or ache and I hadn't done anything to cause it, that this was sudden onset. What followed was weeks of painful unnecessary PT. My husband had to dress me waist up. Certain movements like putting bra on and off not possible. Finally got diagnosed with PMR and put on step-down program of Prednisone which I hate. But it really helped. Still on low dose after 2 years. Step-down is slow. But it is true that it would be worse in the morning! As day progressed it would ease somewhat. I think that is what alerted my rheumy. I have to be on prednisone for bronchiectasis flare ups that occur only with illness and fortunately are far and few between; also thought to be autoimmune connected. Never smoked. So good luck to everyone with this stuff. No one believes you unless you are sick enough to wind up in an ER. My friend who is a doctor said I need to go to Mayo. Maybe when this pandemic is over.

I just posted a reply to this string but saw your vaccine concern. I get flu shot every year. I think it has saved my life more than once. I have autoimmune connected lung disease, Sjogrens, PMR.... I have been getting treated for PMR 2 years now on slow step-down. Since I am a very reactive person to everything I too asked my rheumy if vaccines safe to get with PMR and she said get them. All my docs say the preventative is far better than getting sick. Myself I wouldn't worry. The flu with pneumonia is the worse! And as soon as Covid vaccine comes out they can stick that in my arm with that too. Realize everyone is different but I am a firm believer in vaccination.

Hello @karinaph. I am new to this page. I was referred over from the Mesenteric Panniculitis page (which I also have). I have been on varying doses of Prednisone for the past three years and have not had a reaction to the flu shot. I hope this helps! I also had the Shingles vaccine a few months again without any reactions....yet....

Thank you Kim for your experience. Sorry to hear that you too are having unexplained pain etc. I hope you get relief and resolution. Is Mesenteric Pannicultis auto immune? Were you referred here due to the treatment by prednisone or some crossover between these two maladies?

MP is very rare and I started experiencing symptoms after a very bad fall on black ice in March 2014. It is classified under auto immune and I have recently learned that once you have one auto immune disease, you are susceptible to others. I also have hypothyroidism too (among a bunch of other diagnoses!). Once diagnosed with MP (surgical biopsy), I went a high dose of prednisone ( 40 mg. for three months) and then tapered down. I was also hospitalised for 10 days with severe esophageal spasms (probably brought on by prednisone). And then I was lucky enough to reach remission for two years. Unfortunately the MP and PMR reared their ugly heads in Aug. 2017 and it has been an uphill battle ever since. Today I just went through ultrasounds on my hands and wrists and x-rays on my neck, shoulders, thorax etc. etc. It's been a journey for sure....The prednisone was initially meant for the MP, but is also supposed to be helping the PMR. I am on a large cocktail of medications for various reasons, but for PMR, I am on 15 mg. of prednisone, as well as methotrexate.

Yes, MP is also classified as autoimmune, though there is hardly any research being done on it because of its rarity. I don't think MP and PMR crossover, but who knows really? The treatment meds seem very similar. Besides Prednisone, Azathioprine, Tamoxifen and Methotrexate (among other meds), I am hoping for some relief....

@kimh and @karinaph have you seen this information from Sept 2019? Just wondering if it may give you some additional information and ideas for help.

The Complex Relationship between Mesenteric Panniculitis and Malignancy — A Holistic Approach is Still Needed to Understand the Diagnostic Uncertainties: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6820662/

I was diagnosed with PMR after the shingles shot. The fact that no one wants to discuss that AND that now the shingles vaccine is given in multiple doses spaced apart AND made by a different company says a lot. PMR and injection site redness/swelling were listed as the only two possible side effects - yet no doctor wants to discuss that perhaps PMR is a result of the old shingles vaccine.
I, too, was diagnosed at what doctors called an early age as I was 55 at the time. Because the doctors says I didn’t have GCA ( even though my vision changed dramatically and I had to have cataract surgery ) I decided to stop the prednisone, go to a chiropractor for neck and shoulder pain, do PT to strengthen my shoulders and SWEAT by exercising, walking etc. all those things have kept me off the steroids!!!

I also believe that my PMR started after the old shingles vaccine , then .... each year it came back after the flu shot
5 years of fighting this !
Currently in remission using LDN no pred
I was just discussing the same thing last night with my husband when I said they have a new new new shingle shot but I’m afraid to get it because my PMR will more than likely return!
So what do people like us do when they come out with the vaccine for the virus?