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

Upon my diagnosis, I was initially prescribed 20 mg daily, to taper to 15 mg a week later. That did not work, but since then, my rheumatologist had me split my daily dosage. At that point, he got me to 30 mg daily, 20 mg in morning, 10 mg at night, and held me there for either 4 weeks or a month. Then I tapered by 5 mg daily every 2 weeks until I got below 20 mg, then 2.5 mg daily every 2 weeks until I got to 10 mg, then 1 mg daily every 2 weeks until I get to 0 (hopefully mid February; I'm current down to 3 mg daily). Maybe splitting your dosage may help.

Your rheumatologist seems to be wise to the trick of splitting your dose. It isn't what the textbook says. However, spitting your dose seems to regulate the inflammation for an entire 24 hours better than taking the entire prednisone dose in the morning..

Spitting your dose seems to prevent having pain first thing in the morning but not all doctors know about this trick. Some doctors just know what the "textbook" says.

I am new here and was diagnosed in August 2023 - I had pain in my hands and feet but my major concern was I couldn't lift my shoulders above my head without pain and groin pain which didn't go away and was radiating into my buttocks and thighs (particularly whilst sitting) and I felt like a cripple trying to get out of a chair/the car after sitting for a long time.
Interestingly, I had an episode of sore hands and feet about eight years ago and I was diagnosed at the time with a viral arthritis which resolved after about 18 months. My dad has had PMR for approx 20 years, so I clearly have the genetics. I had long Covid and I wonder if that set off this PMR for me. My rheumatologist says there has been a small increase in rheumatoid inflammations/arthritis worldwide since Covid and they aren't sure if it is the vaccine or a result of Covid.
Both times my bloods have been fairly normal and my rheumatologist tells me it is called zero negative PMR which does happen.

I was put on 10mg of pred for two months and what wonders that did. I was then asked to taper 1 mg per month. Sadly, I couldn't get past 9 mgs which I am currently on in combination with Methotrexate which I started three weeks ago - 10 mgs and now 20 mgs. The plan is to then taper down the pred to zero.

My major issue is fatigue, particularly at the end of the week and feeling unwell two to three days after taking the methotrexate. I also get episodes of sweating/hot flushes at random times and at night time (wakes me). Does anyone else get this?

I am 55 and in Australia.

Welcome @onions68, I don't have any experience with Methotrexate but hopefully other members with a similar experience will respond. There are a couple of discussions you might find helpful:

--- Chronic Fatigue while tapering Prednisone for PMR: https://connect.mayoclinic.org/discussion/chronic-fatiguewhile-tapering-prednisone-for-pmr/
--- Feeling tired! Do others with PMR feel significantly more tired?: https://connect.mayoclinic.org/discussion/feeling-tired/

@oldkarl, @barracudacool and @nancy334 have shared posts on Methotrexate and fatigue in other discussions and may have some thoughts or suggestions.

There are several theories about who are most at risk of PMR.

I definitely think Covid and/or the vaccine are possible triggers.

I had some success with Methotrexate (MTX) when my rheumatologist wanted me to try it. I would say MTX allowed me to decrease my prednisone. Unfortunately my liver enzymes increased as my prednisone dose decreased. Overall, MTX just made me sick. Don't let me discourage you. I firmly believe you never know what treatmen might help you unless you try it to see.

Sweating and hot flushes happen to many people. It is likely a side effect from prednisone.

For your Dad to have PMR for 20 years seems like a long time. PMR is supposed to go away after a few years. There is a "proven genetic link" to many types of inflammatory arthritis. Those disorders never completely go away and tend to relapse and become chronic conditions.

I was diagnosed with inflammatory arthritis at the age of 32. When I turned 52 there was nothing that prevented me from having PMR in addition to inflammatory arthritis. Your diagnosis is what a doctor says it is. However, one autoimmune disorder is very difficult to distinguish from another autoimmune disorder. It is also difficult to know what treatment will work.

I do know that the longer I was on prednisone, the more fatigue I felt. This was probably caused by chronic inflammation and/or a prednisone side effect that caused adrenal insufficiency. Basically, the longer I stayed on daily prednisone, (13 years), the worse I felt. I'm off prednisone now and I feel infinitely better.

Wow, 13 years, that's crazy. I can't imagine. I've been on prednisone for just 8+ months, am due to get to 0 in 18 days, and I hope I'm at zero for a long time. I'm constantly tired. I've been drinking coffee almost every day and I don't even like coffee. I'm very much looking forward to possibly getting better sleep. But at the end of the day, I'll take bad sleep forever over PMR pain all day every day 🙂

I started on a daily dosage and almost within a week my pain level went through the roof. Splitting my dosage during the day was a game changer for me, although my split was a morning vs evening dosage. Looking back, I think my doctor initially started me at a single daily morning dosage because of prednisone's impact on sleep. After the split, pain largely disappeared, but sleep quality did too, which has been a fair trade.

@bfh3 You might find the following discussions on fatigue and PMR helpful.

--- Chronic Fatigue while tapering prednisone with PMR, https://connect.mayoclinic.org/discussion/chronic-fatiguewhile-tapering-prednisone-for-pmr/.
--- How much muscle fatigue do you have with PMR?: https://connect.mayoclinic.org/discussion/how-much-muscle-fatigue-do-you-have-with-pmr/

Have a few questions for those of you that are suffering from PMR and Sjogrens.

This is whats going on: I have had PMR symptoms for over 3 1/2 years, and was diagnosed in 7/2023. I most recently visited Perelman at UPenn and had a great experience with a wonderful Rheumatologist (very open minded and he thinks something else may be going on besides my PMR which I agree). He expressed possibly Sjogrens or Long Term Covid which the timing of the latter and the symptoms were back to back so it makes sense; my Sjogrens blood work showed that I am within normal range but at the high end). I explained to him what has been happening with my body with all the inflammation and an increasing number of watery cysts in my body, the constant clearing of my throat from extreme dry mouth (which usually happens before I start with the persistent dry cough that won't go away). He brought it to my attention that I have an extreme case of dry mouth.

Then less than a week later, I went to my local Rheumatologist (that I miss terribly) and saw the Physicians Assistant (PA) in the group that was covering for her while she is out on leave until March. I handed the PA a list of all my current symptoms and questions, stressing that I am experiencing internal inflammation especially after eating any kind of salt. My face, arms, torso, legs, feet, etc. expand so much, I feel like my skin is being stretched over those parts of my body. When it occurs in my torso, I have difficulty breathing as if my lungs do not have room to expand (I have taken many breathing tests and they are all within normal range). I don't think the PA read my file before she came into the room and she told me that she did not see/have the report yet from the UPenn's Rheumatologist. She mentioned that my high blood pressure could be affecting me as well. I never had high blood pressure and my blood pressure the day of my office visit was 120/80 (normal for me is 118/78). She still insisted that my blood pressure before was probably higher????? Omg! Even with all my symptoms returning, she concluded that all my symptoms are due to me being on 10 mgs of Prednisone (which I don't agree) and she proceeded to reduce my Prednisone to 7 1/2 mgs. I expressed my concerns that my original symptoms are returning (and it isn't my imagination). I don't want to start all over again with my symptoms; they were severe, especially my reaction to salt where my tongue swelled and my throat closing. I also would like to mention that I had my Gall Bladder removed in November, 2023. I believe my blood sugars are a bit increased due to the Prednisone (129), but not bad considering what they use to be when I was on 60 mgs of Prednisone (high 200's to mid 300's).

In the past, I have been diagnosed with hundreds of fluidy cysts on my ovaries, and had a hysterectomy in my early 50's with no real diagnosis for why the cysts occurred; I'm currently 61. Now they are appearing in my breasts on my 3D mammogram. I feel like this may be happening internally in the other parts of my body causing the internal inflammation. According to the Rheumatologist in UPenn, I have an extreme case of dry mouth, which I totally agree with. I drink 5 - 32 oz cups of ice water a day and within a half hour my tongue is dry like sand paper. However, the ice water seems to help decrease the internal swelling that I feel. He has recommended that I have a biopsy of my salivary glands (I have already had the salivary excretion test and it showed everything was fine). I already had a bi-lateral temporal artery biopsy when I was first diagnosed with PMR (due to double vision) which showed that I was "less likely" to have Giant Cell Arteritis. The pain from that procedure is still with me from last October, and the stitched area on the left side of my face is very lumpy (where I still feel most of the pain). You can say I am weighing my options for the salivary gland biopsy and not rushing to get that done. My vision has been pretty much so normal. Here are my questions:

o Has anyone else been diagnosed with PMR and Sjogrens? What were your symptoms and how did they progress?

o What tests did they run to determine if you had Sjogrens (I've had blood work done multiple times, and I'm at the high end of normal, but not out of range)?

o What do they use to treat Sjogrens and is it the same treatment for PMR? What combination of medications do they give you for both?

o If my salivary gland secretion test is normal, is it really necessary to have the salivary gland biopsy?

o Did anyone else ever have a reaction to salt eventually worsening to the point of their tongue swelling and throat closing, especially after Covid or at any other point? I was told by an Allergist that "there is no such thing as an allergy to salt". What was your experience and was there a diagnosis for why this was occurring.

o Does Prednisone cause internal inflammation and watery cysts (I don't believe so)?

o Does dry mouth cause a chalky ridge at the base of your teeth that only very warm water will help to wash most of it away (cold water makes it have a cement consistency that adheres to my teeth)?

*** Any other info would be so helpful and greatly appreciated!

Sorry so long but I'm looking for some answers. Not happy thrilled with the outcome of my last visit.