Flare

Reading your post and others. I've been on this roller coaster of PMR for nearly 5 years.. sad to say. I've had flares several times. Each time has been different not as severe. I'm on just 2 mg. And can't seem to go below that. I was P free for several months, then got a nasty flu in June and soon thereafter ,boom back to bilateral stiffness ( immobility) of shoulders and knees and cramps.
I'd say that perhaps your taper is too aggressive? Normal course is 2.5-5 years according to my Rheumatologist. I too wanted to get off the P swiftly, learn the hard way that was not going to happen. But with that said. We're all having unique experiences.
Question for all:
Do you have pain and cramping in your muscles? That seems to be one of my symptoms. Strange cramps in back, buttocks & pelvic area, neck. Not the usual toes and calves.
My Md says this isn't typical. But it emerged when PMR started.
Take care all, this is a bummer for us all but we can be active... just not quite as much. Time to rest is important for certain.

@laurapmr
A road trip of more than a couple of hours would definitely do in most PMR sufferers. A regular schedule of your pain medication of choice does help in this case, you were smart to do this! Wishing you the best on any future trips!

Hello to Dadcue, Tuckerp and all my fellow PMR people! I have read all your posts here in regards to PMR flares and I thought I would share what I recently went through!
I have had a bad case of Bronchitis for the last two months! I went to urgent care twice, was given zithromycin on one occasion with no relief. Second time I was put on a 10 day course of Doxycycline with no relief. During this time I had a horrible cough, producing thick, green sputum. I was feeling weak and the pain in my shoulders and rib cage was awful. I also had no appetite and lost 12 pounds! So I saw my pulmonologist and he did numerous blood tests and also cultured the sputum I was coughing up. I had very heavy growth of an organism that was resistant to the 2 previous antibiotics. So I was put on Levofloxacin, a very strong antibiotic with potentially bad side effects! The good news is that after 3 days my coughing stopped and I could breathe better!! I finished the antibiotics but I had the worst pain from my PMR in my shoulders and neck area. I took an extra 5 mg of prednisone ( I’m on 7.5 mg) and an extra dose of Tylenol, 500 mg rapid release capsules , and rubbed some Aspercreme on the affected areas. Within a week of finishing my antibiotics my PMR was at least back to normal pain levels for me and I was starting to regain some weight—my pcp had me drinking nutritional shakes for diabetics. The good news is I’m finally feeling better and hopefully can go on a biologic soon! Thanks to all of you who have contributed your stories to this forum. They are really a big help to everyone!

I could never get below 5 with multiple tries eventually spent 6 mos to taper off and still had pain

I have had it for about 10 years and know that it will stay with me forever. I can manage pretty well on 5mg of Prednisone. What preoccupies me more is my Giant Cell Arteritis. That is actually life threatening but still all in all doing pretty well and at age 86 am happy to continue this way for a long while hopefully.

Hi @jenbilllig,
My mother-in-law was stricken with GCA in her mid 80s and lived to be nearly 100. Now I have it in my early 70s.
I wish you the best! Your message is uplifting!

I LOVE ❤️ this. Actually I really feel good. Still play pickle ball 3x week and can see myself reaching 100.
Happy holidays to you.

My father had PMR in his 60's, then GCA in his late 70's or 80's. He was in the hospital a month for the GCA and they couldn't come up with a diagnosis. He almost died. He recovered completely and went on to live a good life, dying at home at 103. In his 90's he went on a trip to Mexico with his second wife and rode a horse up to see the monarch butterflies, at 10,000 feet elevation as I recall. He set a good example for how to deal with it which I can only try to emulate at 75.

This condition is so odd! For three years I had excruciating pain in my feet and in the last month it has resolved and moved to my hands! I know there are typical symptoms of PMR, but it seems many of us experience a variety of atypical symptoms. Speak with your provider, but also know this condition can be a wild ride! Hang in there ❤️

I’m glad you are feeing better and I hope you make a full recovery. Biologics combined with prednisone increases your infection risk. Make sure you have fully recovered before starting any biologic.