Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

Hello @andy1954, Welcome to Mayo Clinic Connect. There is another discussion where members are discussing similar symptoms that you may want to read through and learn what others have shared or post additional questions.

- Smelling Cigarette Smoke (Phantosmia): What could it mean?: https://connect.mayoclinic.org/discussion/smelling-cigarette-smoke/
- More information on Phantosmia - https://www.healthline.com/health/phantosmia

Do mind sharing what you were searching for when you found Connect?

I have not. Yet.

I look forward to hearing from others with same pmr diagnosis. It is helpful

Hi Ethan & all. I’m age 79 and have had polymyalgia for abt 3 months. It was only diagnosed recently and is quite painful. I have it in both shoulders, trapezius, knees, and tailbone. Often I can’t lift my left arm, and have to “get started” to walk, but then can move my legs pretty well. Sometimes I use an extendable gripper to reach things. My primary care doc has started me on three 5mg increments of prednisone but wants me down to 10 and then 5. 5mg doesn’t help much. I take a swig of liquid acetaminophen to help me sleep but still have arm pain at night. I’m been vegetarian for 11 years but eat no fish, meat, or chicken. I do eat eggs, dairy, and adore fresh fruits & veggies. It’s great to find a support group, look forward to meeting all of you online! 😊

I am also relatively new to PMR barbq and I was at a stage where I could barely walk. My GP hit me with one day at 50mg and within five hours I could walk and was almost pain free but somewhat jittery. The next day I dropped to 25mg for one day then down to 15mg for three weeks and currently on 12.5mg and into my second week before dropping to 10mg for four weeks and then dropping by 1mg every four weeks. That plan has derived from my learnings of others experiences on this site. What a godsend. Really hope you can get on top of your pain and I certainly know how you are feeling.

Hi @barbq, I would like to add my welcome to Connect along with @legendts and others. Sorry to hear you joined the polymyalgia rheumatica club. It's certainly not fun to partake in all the pain that gets dealt out with the condition. Normally the prednisone will keep the pain levels down really well and the real trick is to taper off very slowly while keeping any pain to an acceptable level that we can deal with. The best suggestion my rheumatologist gave me was to keep a daily log of my pain level and the dosage of prednisone I took each day. Each of us are different so you just have to make up your own pain scale. Mine was 0 to 10 with 10 being unbearable and 1 or 2 being tolerable but uncomfortable. If I was at 1 or 2 I could taper to the next lower dose of prednisone. I started at 20 mg prednisone and the first taper was going down by 5 mg but after that I had to drop to 2-1/2 mg. Eventually I was tapering off by 1 or 1/2 mg each week if possible.

Do you keep a daily log of your dosage and how you feel?

Thanks for information! Did you not let your fatigue come in the equation? I have fatigue but no pain . Thanks again.

HI! I am new to the board. I am 71 and I was diagnosed last June 2nd with PMR.
I had no idea what happened. I woke up that morning and couldn't move my arms or legs. After a struggle and with help from my husband, I was able to get out of bed and took 800 mg of ibuprofen. I tried getting hold of my Dr. but because of Covid, I could only schedule a virtual appt., he sent me for bloodwork and put me on 40 mg of prednisone. When the results came back my SED Rate was 40. He suggested that I see a rheumatologist. Two weeks later I saw a rheumatologist and she weaned me down to 20mg. The pain was gone. I didn't want to do it. I didn't understand the ramifications of the high dosage of prednisone. I was feeling great! I was up at 4am cleaning, washing windows, cleaning out closets, etc. I was scaterbrained, never able to finish a Sentence, it was as if I was high! She (my Dr.) brought me gradually down to 10mg. I have been able to drop it lower to 6mg at present. On January 1st I developed Covid. I received the monoclonal antibody infusion on the 4th. It kept my symptoms to aches and pains. My problem is that I can't stop the aches and pains. It is mostly in my arms, back of my legs, wrists and sometimes fingers. I dont want to up the prednisone. Has anyone had Covid with this PMR? Has it brought back the pain? I am also loosing my hair. I am trying to find out if this a side effect of the PMR, COVID OR THE INFUSION I HAD. I am scheduled to get my first vaccine on April 6th but I am hesitant to do so because I feel I am in antibody overload now. MY rheumatologist never heard of anyone loosing their hair from PMR or steroids. As I am reading through the posts, it looks as if others are having ups and downs with their symptoms.
Do I have to resign myself to the fact that I will always have some form of pain? Thank you for any comments!

Yes, still some fatigue too but better mobility. I reckon it will take time for everything to go away but at least I’ve left ground zero. Hopefully the long term dosage will prevent another episode. How are you doing?

Hi @josiemc24, Welcome to Mayo Clinic Connect. I'm glad you were able to see a rheumatologist. Both occurrences I've had of PMR I was started at 20 mg prednisone and the pain went away within a few hours of taking the first dose. Then it was a tapering process to get off. The first occurrence took me 3-1/2 years to taper off, the second time 1-1/2 years to taper off. Hoping someone else may have had COVID and recovered that can share their experience with you. I've had both Pfizer COVID vaccine shots but have never tested positive for COVID thankfully. The pain symptoms can come back if you try to taper off of prednisone too fast. I've never heard of PMR causing hair loss either but did find this statement in a search...

"Symptoms of polymyalgia rheumatica - Fatigue can be another characteristic symptom. People suffering from this disease have more and more difficulty getting out of bed and starting their daily activities. Other symptoms include: Hair loss that has happened because of a loss of appetite." - Polymyalgia rheumatica (pmr): what is it, symptoms, causes ...: https://www.topdoctors.co.uk/medical-dictionary/polymyalgia-rheumatica-pmr#

Giant Cell Arteritis is a related condition to PMR and one of the symptoms is facial swelling and hair loss - "headache, symptoms of polymyalgia rheumatica, low-grade fever, fever of unknown origin, loss of appetite, depression, joint pains, weight loss, hair loss, and ..."
- Giant cell arteritis presenting as facial swelling - Pub Med: https://pubmed.ncbi.nlm.nih.gov/18926062/

Did your rheumatologist mention anything about Giant Cell Arteritis (GCA) or ask about pain around your temples or scalp?