I think I have PMR and I’m terrified

@jeff97

Were you started on Actemra relatively soon after you were diagnosed with GCA?

I was on prednisone for 12 years before Actemra was tried and then another year or so until I was able to taper off prednisone. It wasn't so bad being on prednisone other than how it changed my heart rate, blood pressure, metabolism, sleep cycle, mood and so many other things. I didn't know that prednisone replaced cortisol which was a major regulatory hormone.
https://my.clevelandclinic.org/health/articles/22187-cortisol
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It was impossible to take the right amount of prednisone when the situation warranted more or less prednisone. There was no way I was ever going to regulate my prednisone dose the way the HPA axis regulates cortisol. I did the best that I could but 12 years on prednisone was way too long.
https://my.clevelandclinic.org/health/body/hypothalamic-pituitary-adrenal-hpa-axis
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I still do a monthly Actemra infusion. I am now five years into my post prednisone recovery and I still see an endocrinologist for hormone imbalances and metabolic abnormalites. My cardiovascular system has normalized so I don't need blood pressure medications anymore. I think my post prednisone recovery is slower because PMR lasted a long time and needed prednisone for more than 12 years until I finally tapered off. I have learned more about prednisone after I tapered off than during the 12 years when I was taking it. My endocrinologist has explained many things to me.

Maybe it is just because I have aged naturally instead of feeling like I suddenly aged when PMR was first diagnosed. At least Actemra doesn't suppress my adrenal function like prednisone did.

@martyn I haven't read through all the replies, but I want to tell you that you will get through this. I diagnosed myself but had a hard time getting a doctor to do the bloodwork to diagnose me officially-- as an older adult, I was told that everything was due to osteoarthritis. I woke up one morning unable to move my arms or legs. My first thought was stroke, but I quickly remembered that this can happen with PMR and that strokes are not bilateral. I managed to gently wiggle and then more and more movement until I could get out of bed. It seemed like forever but objectively must not have been long because I really really had to go to the bathroom and made it. Finally I got a diagnosis from my PCP and got on prednisone. Eventually I got an appointment with a rheumatologist who now manages my PMR. I was off for a few years, have had only minor flares until recently -- I didn't recognize non-specific signs of fatigue and just not feeling like exercising as a reaction to tapering after a flare. Things went on, and long story short, I had a full-blown prednisone withdrawal syndrome hit me with signs of secondary adrenal insufficiency. So this is new to me, and it is too early in the game for me to feel much besides depressed over it, but I am working on acceptance and doing what I can. Baby steps each day. So the take home for you is -- PMR does get better, there may be minor setbacks, most of them are minor, make sure you are very tuned in to subtle changes and stay in good communication with your doctor. You'll do fine.

Martyn, I’m 72, also an avid cyclist, skier, sailor, etc. Was diagnosed with PMR a few weeks ago (July 31) and like you had never heard of such a condition. I spent two weeks worrying intensely about my health and wondering if I’d ever get back to the activities I enjoy so much. Prednisone at 15mg for a week didn’t help, but after increasing to 20mg daily my pain gradually diminished (happened over two weeks for me, not within 24/48 hours as many people apparently experience). After a month of minimal physical activity I’m finally getting out for daily walks of about four miles and feeling significantly better - not back to full strength, but at least I can schedule social commitments and exercise. I’m learning to be patient and accept the need to manage my activities more carefully than previously. I’m wondering when my rheumatologist will start tapering - seems that will be my next step. Good luck to you! Paul

Although I too am sorry to hear you might have PMR, but can at least offer hope that Prednisone does work to stop the brutal pain and very strange symptoms. I'm new to PMR myself and suffered horribly starting with just the shoulder pain and then other symptoms came that were so wierd it was really hard to figure out what was going on. It took from Mid-March until Nov.31st to actually get the diagnosis and then Ultrasound of my shoulder confirming it was PMR, and that I didn't have GCA (Giant Cell Arterits). If you can get an Ultrasound to confirm the PMR and determine if GCA is present it would be good. I know it's not always easy depending on where people live and the health care available. GCA is even more serious than PMR. This is not yo scare you or upset you more, but for you to be aware of this. People can have both, but having PMR doesn't mean you have GCA. Another reason to ask for Ultrasound, if you can, it gives absolute confirmation.
As for hope and positivity, I can tell you that having Prednisone has given me back my sleep, my daily life that I can actually do things and not merely survive from one day to the next. I'm 20+years older than you, and no where near as active, but the difference with Prednisone is night and day. The pain in my shoulders, upper back, arms and fingers was so brutal every single night it would wake me up and I'd have to go sit on couch, as being upright was only thing that eased it a little. So for months my sleep was minimal and non-restorative. Now, with Prednisone, Magnesium Glycinate and .5mg Melatonin, I'm sleeping good again.
I can go out with my husband again and do things. There is a light at the end of the tunnel but we are going to have to deal with unknowns. You made it through the failed back surgery, you can do this too. One day at a time and with God's help is manageable for me. This support group is wonderful, I agree. People sharing their experiences and knowledge has been so helpful and especially the support we can give eachother with this disease. I hope you don't have it, but if Dr thinks you do, think about asking for ultrasound if you can and want to.
Blessings.

@martyn Hi, I am also in UK aged 81 and in quite good heath. GP was sceptical of my self-diagonsis of PMR based on my bilateral shoulder and hip pain that developed over a few weeks after a covid booster late April. Coincidence ?? My ESR was normal and CRP 6.2 (barely elevated). Research showed that inflammation markers may be near normal with PMR.
The acid test is - does the pain resolve quickly after a few days of prednisone or prednisolone? (basically the same). I looked for a Rheumatologist to get an expert opinion. On the 'Prednis-test' on 15 mg/day, my pain improved, but very slowly which confused the Rheumatologist - till I found she had prescribed enteric-coated Prednisolone - which is not absorbed in the stomach. Standard Pred is absorbed and works faster. She then prescribed the correct non-EC Pred. A PIP to protect the stomach lining is recommended and Lansoprazole seems to be better than Omeprazole.
Later blood test showed CRP had jumped to 34. I aso found splitting the dose 10 mg in morning and 5 mg evening avoided a morning pain peak. Rheum was still unhappy with my slow response and proposed to stop Pred after 2 weeks and arrange some scans (Hips X-Ray FDG PET CT).
2 days after stopping the Pred I had an unpleasant fainting episode blood pressure dropped dramatically. This is known to affect some people when stopping Pred suddenly - usually after a longer period than 2 weeks - but be aware. Luckily I was in the doctors surgery with my wife for a blood test when it happened. All was back to normal in a couple of days. (Get a BP monitor).
The scans were also normal - so sign of GCA or anything 'nasty' so I restarted Pred at 20 mg / day (I split 10 and 10). Over a week the pain progressively reduced to the point where I was pain-free, and I continued pain-free apart from a 24 hour flare early in 2nd week that I attributed to stress and not enough rest. For the 3rd and 4th week I reduced Pred to 15 mg (10 and 5). Some pain in my RH shoulder which I attribute to known OA (Osteo Arthritis). For the 5th week. I was advised to taper to 12.5 mg/day, but after 1 week I had some mild shoulder pain both L&R. (Hips OK though).
Conclusion was the taper to 12.5 mg was premature and Rheum suggest jump back up to 17.5 mg. I elected to try at 15 mg first and so far, everything is fine - until I fell off the shed roof trying to coax our cat down from the top of a 5 m high Leylandii hedge. As I lay in severe pain on my back my grandson remarked - 'is this the end of your football career graandad?' After 7 hours in A&E my PMR concern has receded, but at least today I can hobble gingerly round the garden and revisit the scene of my criminal stupidity - I was wearing croks.

One year ago (08/2025) I had a bicycle accident and developed right elbow bursitus. I was 61 yrs old and cycled and ran 3 miles 4x per week. Shortly after the bursitus I developed PMR and I had horrible pain in my arms, shoulders, legs and even in my left knee. I was diagnosed 6 weeks later and was giving some prednisone. Prednisone was the only thing at that time that worked for me. A few months later I saw a rheumatologist and he prescribed 20mg of prednisone for 7 days then 15mg for 7, then 10mg for 7 and then 5mg for 7 and had me off prednisone for about 2 weeks before I had to go back on 10mg of prednisone for another tapering this happened one more time and I am now off prednisone for 73 days! Still have some pain in shoulders usually at 2:30am most nights but it is very manageable now and hope to stay off steroids as long as possible. I was lucky because I had noe side affects from the prednisone and it is a miracle drug as far as I am concerned. I have done research and it seems that majority of PMR cases is people with a Northern European background and my Grandpa and his sister suffered from it back in the 1980's. Just thought you would get a little encouragement from my story as what I can see is I am very lucky. PMR is horrible and I have also had back surgery in 1998, ACL knee surgery in 1991, meniscus surgery in 2010, umbilical surgery in 2021 and surgery to reattach my quad muscle to my knee in 2023. PMR is harder to manage than any of these surgeries. Hang in there prayers for you. Bill

@dave923 Thanks for your reply and such a positive outlook. I've just read it again after a particularly gloomy afternoon in which my mind has become totally pre-occupied on what impact PMR is going to have on my life. I'm hoping that my age and general fitness levels will help me stayt active. I was really encouraged to read that you are cycling 100km as that's my sweet spot on a bike with a few hills thrown in. Maybe I'll have tomanage my expectations but as Eddie Merckx once said: “Ride as much or as little, as long or as short as you feel. But ride." thanks again and good luck to you

Welcome (unfortunately) to the club. We all had the same feelings you have. Shock, disbelief, what does this mean going forward, what is forward?

The steroid test should let you know if you have PMR. That is if the dose is strong enough. For me, 40mg/day (half in the morning and half in the afternoon) had me feeling like Superman. I was looking for tall buildings to bound and steel bars to bend.

Then my doctor said, “Slow down buddy. We don’t want you taking that much for too long.”
That was when I was first introduced to the harmful effects of steroids. I probably took way too high a dosage for way too long. I went into this blindly.

Luckily for you, you are not going in blind. You’re a little bit informed and that’s better than most. You’re cautious to glucocorticoid usage, that’s good. And, you connected with a wonderful group of people who are sharing first-had experience, knowledge, and care. Yes, even advice which you should always discuss with your doctor first, but I found much of it helpful. Especially, with what to ask your doctor. There is a good discussion in this Support Group of a list of questions to ask your doctor. Make a list of questions, concerns, supplements, diet, exercise, and lifestyle changes that will get you through this asap.

Lastly (for now.) sleep is crucial. It is when our body repairs. Prednisone/corticosteroids/glucocorticoids can make sleep impossible. Talk with your doctor about help with that if it becomes an issue.

Keep a PMA, positive mental attitude and know that you are young and will get better.

I wish you the best.

@dadcue My rheumatologist wanted me to start Actemra as soon as I was diagnosed, but it took 6 weeks to get it approved by my insurance and get it started at the specialty pharmacy.

I didn't have any adrenal issues while I was tapering prednisone, so I didn't expect any problems after I stopped. But looking back on it, I realize it probably took 6 months for my adrenal function to get back to full strength. I think not being able to exercise hard was an indicator of adrenal insufficiency. It like pressing hard on the gas pedal of your car and nothing happens.

@martyn I see that @stonewheel has just summarized things nicely. It's important to stay positive even on dark and gloomy days of pain accompanied by many ruminating thoughts of PMR despair. I've been exercising/biking even before getting on prednisone (it hurt mainly in the shoulder girdle and neck, especially on climbs). I recommend starting easy and sticking mainly on flat roads at first and see what you can handle and how much recovery time you need. Prepare a "mantra" sheet and place it in a visible spot at home with 5 points e.g. I will beat PMR! All the best