2.5 years ago I had all the symptoms of PMR, elevated CRP and SED rate, stiffness and pain in neck, both shoulders and both hips, unable to roll and move in bed at night, loss of strength, exhaustion, depression, just to name a few. Basically I went from a healthy and fit 47 year old man to feeling like a 80 year old man overnight. After taking prednisone I immediately felt normal again. I was only on it for two weeks. Then I had a relapse it was much worse than the first time at one time I fell off the bed in the middle of the night and couldn’t get up from the floor. It was horrible. Was referred to a rheumatologist and blood markers were high I was prescribed prednisone and felt immediate relief. Doctor did not want to diagnose me with PMR because of my age (47) at that time. Doc thought I had RA which I disagreed because I don’t have any of the symptoms no swollen fingers etc so I decided to find another doctor for a second opinion. I was tapered off prednisone very gradually I went from 15 mg to 1 mg in two years. I take 1mg every other day. It was all my doing because I know my body better than anyone. Until recently I decided to take 1mg every 7 days but the pain and stiffness was returning I felt I got run over by a truck. So I took 2 mg and felt better. My new Rheumatologist doesn’t think I have PMR because of my age. I’m 49 now. He wants me to stop prednisone because of the high risks. He did a bunch of blood tests and everything came back normal. This is so frustrating. My next appointment is in 4 weeks. I am going to go cold turkey and stop prednisone for three weeks then get bloodwork done. I know inflammation markers will be crazy high. I don’t know what to do. Anyone have similar experience? Anyone under 50 with PMR diagnosis? Also other symptoms I’ve been experiencing are numbness and tingling of fingers in both hands and scalp tenderness. I know I’m a mess. Should I continue taking 1mg prednisone and find another doctor for a 3rd opinion? Sorry for all the questions. Thanks for reading.
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Jmh716
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Sorry to hear of your problems. Think your doctors need to think outside the box (it may be rare, there are quite a few patients under 50 with PMR) and go by your symptoms, and also how you reacted to the steroids. Steroids are not used to treat RA because they don’t work for it - so that should tell the doctors it’s not that.
The reason (probably) why your blood were okay last time was because you were on steroids, and the inflammation from your PMR was controlled- not because you don’t have PMR.
As a patient who had GCA, I would be concerned about the scalp tenderness- and honestly, so should your Rheumy! Certainly more than low level steroid use.
Not sure you should be going cold turkey, but if it’s the only way to get the doctors to take you seriously then so be it!
Thank you for responding. Yes I am aware that inflammation markers are low due to prednisone. Can you tell me more about GCA? What other symptoms did you have? Scalp tenderness comes and goes sometimes it goes away in 2 days and returns next week. It feels like a pimple but it’s not. I did mention this to my rheumatologist but he didn’t seem concerned. My plan is to keep taking 1mg every 3 days. I am in the process of finding another doc for a 3rd opinion. What do you think? Again appreciate your reply. Have a blessed day!
All the gory details in one post…but it is a bit extreme…and GCA only
- but have to say, full-blown GCA doesn’t usually have days off, the symptoms normal get progressively worse. Although they may start a bit spasmodically, which it’s why they aren’t always taken seriously enough by doctor or patient, they do increase in intensity and frequency.
Sometimes I just worry about some rheumies. If 2mg pred is managing your symptoms well he is crackers to worry about it being risky - especially if I understand you correctly and it isn't even 2mg every day! Just because the guidelines say "over 50" as the age range for PMR doesn't mean that there are not a small number of people who develop it younger. The youngest case report in the literature is of a 24 year old who presented as typical PMR and they couldn't find any other reason for the symptoms:
There are repeated warnings throughout the literature not to dismiss symptoms on the grounds of age - no-one ever told PMR that it isn't allowed to appear a few weeks before your 50th birthday but it is fine to turn up to your birthday party!
If you have scalp tenderness - just like DL,I would worry about that a lot more.
If you can possibly keep on with your low dose, that would be much better than a cold turkey experiment. Too many, already an example or two mentioned in this thread, have trouble getting symptoms under control again after being told by Dr to do so, and "see what happens". Which results in increased dosage, opposite of what either patient or Dr wants.
I suppose the important thing really is to ensure you can get hold of the steroids. As you say you know your own body and it is not your fault that there are some incompetent rheumatologists around. I feel so sorry for you having to go cold turkey to get your inflammation markers up. They can be quite slow in reacting to inflammation, so that may be why they were OK the first time.
I don't like your having to go 'cold turkey' just to prove to medics that you have inflammation. You're the one who has to put up with the pain for weeks! I reduced to 10mg quite quickly from15mg recently because I was told to, presumably for the same reason as you, and the result was having to go back up to 15mg, where I have now been for a month, and not nearly so comfortable as I was before.
It's the age old story sadly,G.P.'s and Rheumatologist either lacking experience or not doing what we do on here ............... listen to those with knowledge and experience.I have had two flare ups for the exact same reason as you.
Looks like Jmh716 will be the latest to pay the membership fee for this club.
I started experiencing PMR/GCA symptoms when I was 44/45 which was when I came across this site. (See my first post linked above.) After going through the round robin of other illnesses, I was finally diagnosed with PMR/GCA when I was a month past my 50th birthday. (Like magic!) And the Pred worked in a couple of days!
I am currently suffering a relapse of GCA symptoms (temple tenderness and pain, tight throat, ringing ears, jaw pain while chewing, 'full' heavy head that seems to be threatening to explode). I put it down to tapering too quickly from 40mg to 10mg in 10 months. All in all, not a smart place to be.
My CRP has never been raised, ESR only slightly. So the docs kept sending me back with paracetamol and other NSAIDS, Amitriptyline, Pregabalin, Tramadol, etc, none of which ever helped.
You know your body. I hope you find a more sympathetic, open-minded Rheumy. We do not all tick all the boxes, we deviate from text book descriptions. From the little I know, how well the Pred works on you is a very reliable indicator of whether this is PMR/GCA - but this is a subjective opinion.
But yes, there are quite a few of us on this forum i think who have had it since well before 50 - hope this helps. All the best.
I read your first post. Wow, you’ve been through a lot. It’s unfortunate you had to wait until you turned 50 for them to finally diagnose you with PMR. They took the safe route. I applaud your perseverance and strength. I’m curious, is your PMR the root cause of GCA or is it the other way around? I’m sorry this is new to me so bear with me. Last question, what dose of prednisone are you on now? And how do you feel? Appreciate you taking the time to reply. Have a blessed day!
I am on 50mg right now. I have a review in a couple of days and this may change. As far as I can recall, both the temple tenderness and widespread PMR pain & fatigue all came together. When it all kicked off the PMR side was more of a concern for me - I remember literally leaning on doors to enter meeting rooms at work and people looking at me weirdly, not even being able to lift a cup of tea. It's the other way round right now - the GCA symptoms are more worrying.When the Pred dose was upped on Oct 26th, I felt the instant relief. But that's dissipated. I think I may need a higher dose to get on top of the tight throat, throbbing head, jaw pain, etc. Fingers crossed!
You take care, keep us updated. Hope you get a good Rheumy.
hi Jmh716. It sounds like you also have GCA. I also know my body and it took ages to diagnose me. I also am having a relapse which I hope is nearly over. Read my profile for interest. I am older than you but reckon I was managing the symptoms for years without realising the true nature of what I had. All info has been provided by others so just add that you should go by symptoms. I think the numbness and tingling in hands is significant. I had it. It went to feet next. I had this very early on. Lost dexterity and control, couldn't sign name and thought early sign of mild stroke but not so. Best wishes and good luck.
Read your profile, wow! You’ve been through a lot. I admire your perseverance and optimistic mindset. I am learning so much about this terrible and complicated disease through others journey. Why do you feel I may have GCA? The only symptom I’ve experienced is scalp tenderness that last a few days. No major headaches or jaw pain. About 6 months ago I had a scare when I experienced some loss of vision while driving it’s hard to explain I was still able to see but it was cloudy like trying to see through a fog or smoke that’s the best way to explain it. It was just one time. And I was on 3mg prednisone at the time. It was a frightening moment because I’m already deaf and my eyes are my ears. I didn’t mention that to my rheumatologist. I should have.
Symptoms of PMR started 2.5 years ago. Scalp tenderness started like 1 year later. If I had GCA, I would think 1mg prednisone every 2 days wouldn’t be enough to suppress it. What do you think?
P.S. I should mention that the only time I experience numbness and tingling of fingers in both hands is when I’m laying down on my back with neck being supported by pillows. Maybe it’s a pinched nerve from the neck being in a flexed position. Have you experienced that?
scalp tenderness significant. Even 1 loss of vision as you describe. I had several like that spaced out and dismissed them. when I saw diamonds they diagnosed migrain. I got tongue tied when my speech was compromised, muscles in tongue affected. Muscle in back of neck when it tightens closes the blood supply to the optic nerve and makes the eyes hurt like pressure on the backs of them Eventually leads to headaches, The throbbing I put down to a constriction of the blood supply. Jaw pain when eating can ba along for the ride. Any and all of these signify a potential for GCA. I can't prove te tingling link, it;s only a surmise on my part as an indicator. If you have gCA appearing I don't think your dose will suppress it, but don't know. I suspect that inflammation may be very slowly but steadily increasing, whether your bloods show it or not. Just be careful and alert to these symptoms.
No, the RF test can be positive in perfectly healthy people and negative in people who do actually have RA! Being positive is thought to be a predictor of developing an inflammatory arthritis in the future. Maybe ...
The ACCP test is more reliable but even that isn't 100% accurate:
Obviously has never heard of seronegative RA! That's when none of the tests are positive but there is radiological evidence of joint damage. Illustrates why sometimes it may be worth seeing a rheumy if your PMR isn't being typical - sometimes it isn't bit sometimes it's because it isn't PMR at all.
I am new to PMR. Have had RA for 17 years; quite stable on methotrexate. Being newly diagnosed with PMR, I read all I could about it. It seems that PMR won’t kill you, but GCA can. The symptoms of scalp tenderness, vision problems, etc. are concerning. Perhaps you can list all your symptoms and discuss them with your doctor. I don’t think the very small dose of prednisone will help. Prednisone can be so helpful in reducing inflammation, but it is a dangerous drug, and dosage has to be very carefully monitored.
I did mention scalp tenderness to my rheumatologist but didn’t seem concerned. This is why I am looking for a new doctor. What symptoms did you experience before being diagnosed with PMR? Are you taking medication? Yes, prednisone is a double edge sword! Right now I’m taking 1mg every 2 days and it is keeping symptoms at bay. I had a mild flare up when I didn’t take 1mg for 7 days.
Hi. About two months ago, I had severe generalized muscle aches and pains. I have RA, but had never experienced such overall pain. I took Tylenol, Advil, and Naproxen, and used ice, but nothing seemed to help. The symptoms lessened, but I continued to have pain in my upper arms and neck. I could not lift my arms. It was worse at night, and I could not sleep. I went to my rheumatologist, who examined me, and ordered blood tests. My C-Reactive protein was high, 10.2. The doctor diagnosed PMR, and told me prednisone was the treatment, and would be taken for a year. He prescribed 10mg. of prednisone to be taken every morning. I will get blood tests and see him in a month. As I understand it, if the prednisone eliminates the pain, and if CRP is normal, the prednisone will be reduced very slowly, by .5 or 1 mg. per month, so after a year it will be discontinued. After five days, the pain is definitely less.
I take 7.5 mg. of methotrexate once a week. The dose has been constant for many years, and the RA is controlled. I have blood tests every three months, and sed rate, CRP, liver enzymes are all normal.
“As I understand it, if the prednisone eliminates the pain, and if CRP is normal, the prednisone will be reduced very slowly, by .5 or 1 mg. per month, so after a year it will be discontinued.”…If you’re one of the lucky ones…..but please don’t bank on it. …you might like to read this in case it doesn’t pan out as expected -
Good…I’m sure you can as you’ve managed with RA for so long, but just advising that PMR is not always as straightforward as some doctors would have patients believe.
Your point is well taken. On my next doctor visit, I will ask the doctor more specific questions about the prognosis. We have a very good relationship, and he is quite open to answering my questions in depth. I do appreciate your comments and advice.
Wow. What symptoms did you experience with RA and PMR? Any similarities? How did your second rheumatologist determine that you had PMR? Do you still have PMR? If so, are you taking prednisone? Sorry for all the questions. Thanks for the link re: prednisone. It’s very helpful. This is why I prefer to keep taking 1mg every 2 days instead of going cold turkey. I am looking for a new rheumatologist to get a third opinion. It’s frustrating that the two rheumatologist I’ve seen aren’t thinking outside the box.
I was diagnosed with PMR at 46. It is far more likely to be some thing else at this age that presents like PMR so you do need to be fully investigated to rule out other causes.
I had a PET-CT and spinal MRI and as well as a host of blood tests to look for RA and all-sorts.
You sound as though pred works therefore it's steroid responsive whatever it is. If they want you to stop pred then they need to have a workable plan that evidences why, and also gives you a quality of life. Keep an eye on that scalp tenderness!
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