Well, visit to Rheumatologist resulted in more confusion. Not sure to be happy or sad. They stated I don't have the classic symptoms for PMR despite elevated ESR, CRP, anemia, raised ferritin, + ANA, physical manifestation to include low grade fever and rapid +response to prednisone. Since I'm under 50 and imaging is insignificant they believe there may be another reason for my symptoms.
Well, they are not kicking me to the curb. They ordered more labs, PET scan and want to continue to taper. She also wants me to see an endocrinologist to evaluate my adrenal function. Needless to say they want me off prednisone. No argument there.
Now, I'm more confused., but I do welcome not having PMR so what is it ? I have been ruled out by oncologist, general practitioners, gastrologist for other. Perhaps it's time for the psychologist, hmmmm.
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Sounds to me as if you DO have classic symptoms actually, but have been sidelined by your age. On the younger end of the spectrum yes, but certainly not necessarily too young, as we know from others on the forum.
As for what it is if not PMR, sorry can’t help on that… and sorry to hear you are back on the merry-go-round of trying to get a diagnosis….please keep us informed, and good luck.
If they are doing a PET scan you do need to be off pred for best results - and you wouldn't be the first to get a positive PET for PMR when a rheumy said it couldn't be!!! Nor can an endo say anything useful while you are on pred.
I'm sure I must have said somewhere that you would meet some resistance to a PMR diagnosis at your age. You AREN'T too young (the youngest case in the literature is 24) and I am left to wonder what THEY think are typical symptoms for PMR. In my experience their typical symptoms only appear in the textbook patient - who definitely only exists in the textbook.
Have they done an anti-CCP test? They should have right at the start.
You are not too young, just at the young end of the age range. My guess is that you do have PMR. I would welcome tests for everything else though, just in case. Your response to Prednisalone is pretty definitive. I am glad some nasties have been ruled out. It is not all in your head, but you do need a doctor who is up to date on their facts and understands how PMR works. That’s what I would be looking for. Arm yourself with information provided on here in FAQs and start searching.
Great sympathies; it's horrible not having a firm diagnosis.I wonder whether psychiatrists ever get fed up with having everyone else's diagnosis failures palmed off on them?
Rheumys who are dismissive of PMR solely based on age drive me crazy. I actually DID have textbook PMR and was still told it was impossible to be PMR because I was 48. I had 100% of the PMR symptoms suggested for diagnosis and only 50% of those for Rheumatoid Arthritis and they wanted to diagnose me with seronegative RA (because the blood test for RA was negative) and force me off the prednisone. I eventually left the rheumy and went back to my PCP who was willing to treat me for PMR and manage a slow taper.
It amazes me that doctors think the PMR seems to understand birthdays. PMR thinks I must wait until SMH4CRNA’s 50th birthday before I show my symptoms!
It would be wonderful if you had someting that was treatable and curable and wasn't PMR. However, based on age to decide it is just maddening that they don't understand the bell curve of probabilities. the sooner you find a practitioner with common sense the better.
I have been on this journey for 6 years myself. I was 48 when I had my first symptoms. The only thing to help the pain was steroids but I too "was too young for it to be PMR". I am still on the diagnosis merri-go-round with the latest guess being menopausal and am not on HRT patches to see if that helps... with a little bit of possibly Rheumatoid arthritis thrown in. I have tried not to worry too much about an official diagnosis and know that currently my doctor is happy to keep prescribing the steroids and I will slowly reduce them when possible. Good luck on this mad journey!
The pain in my wrists and hands is not getting worse and I am very very slowly going down to 8.5mg of steroids with it holding stable so maybe... I am 2 months in...
I have seen this play many time... Too young to have PMR ... Maybe we should have age criteria for Rheumatologists and see if they meet the age limit or maybe they are too young, and inexperienced to be a doctor
it's not their age but their mindset. Young or old they are obstructive at best. It is a good job this condition isn't transmissible. So many might wish to share their experience to assist their education.
Both Rheumatologist are young. Miss my initial Rheumatologist from San Diego. Felt I was well taken care of. Now I have doubts I have PMR, which does not aid to mental well-being. Although, again, I welcome the idea of not having it. I have an appointment with the VA and I'll ask for a second opinion.
The trouble is that with no definitive marker it is a case of ruling out everything else and then being broadminded enough to not believe their silly criteria ...
My first episode was at 49 yo. Took a few years to settle down. Second episode was at 58 yo and it has taken about 4 yrs and now this a are under control. Currently a 61 yo and live in New England USA. Pursue your health. Hang in there
I was diagnosed w/ PMR when I was in my late 40's. I had all of the classic physical symptoms but none of the blood markers. (This was before google, so I couldn't match my symptoms to a dx.) Every DR dismissed this diagnosis (except the original) because they said I was too young. Flash forward to 10 years later, same exact symptoms + daily headache, GCA verified by biopsy. Then all the docs took it more seriously because my age was more in range. That sent me down a long road of prednisone use - the more typical story.
Read the Rheumy official report from the last exam. She believes I do not have PMR based on my age, labs and symptoms (?). She wants me off prednisone to the point where I taper 1mg per week. She even would like me to see a endocrinologist to evaluate my adrenals to get off prednisone sooner. She is sending me for PET Scan to rule out malignancy.
Labs before pred or labs after pred? And most endos won't look at pred patients until they are down to 5mg - and there isn't much they can do to improve adrenal function. If they could, it wouldn't be a problem!!!!
I should be down around 5mg by the time of the appointment. They have my lab results from before and after. All the report says I don't fit the classic presentation
Wow, what an experience. I'm so sorry you have needed to go through this. I've suffered for the past year and half and that has been grueling. I don't care for the prednisone, so I welcome to not take it. The Rheumatologist stated she rather have me on a biologic if needed. She dies not believe I have PMR due ro my age and the fact I don't have the classic presentation. I question this since educating myself I do have the classic presentation. With this said, I'll follow doctor's advice and taper followed with a PET scan. Again, thank you for sharing your story. Glad hear you are in remission.
Sadly age is not a barrier, but given you are so young and it can be difficult to diagnose PMR conclusively, they will want to run more tests, and that's good. I was wrongly diagnosed with ankylosing spondylitis and psoriatic arthritis and fibromyalgia at first because I was told I was too young to have PMR at 51, but eventually by persistent battling and armed with help from here got the right diagnosis years later with a PET CT scan
You are, it should give you answers, provided you are on a low or no dose of Pred so that any inflammation shows up on the scan. I had to fight for years to get one to finally prove to doctors I had PMR.
Yes, I should be on low or off by Sept 30 for the PET. I have Endo appointment one week before to evaluate adrenals. I do hope it will give some resolution so I can move forward.
I've often wondered that. As our adrenals don't work, what happens in circumstances like fight or flight stress, when if we weren't on steroids, our bodies would respond and pump out cortisol, adreniline etc. As they can't and we only have what the steroids produce, no more no less, is that why we flare if we overdo things?
I still get a reaction if I am alarmed. Got one a week ago when I had to react fast to a surprise, so maybe there is still in a crisis some reaction. Wasn't anywhere near what I would normally have expected though
glad you are still questioning and open to alternatives. Whilst you are on pred and tapering it's constructive and hopeful to be flexible. I'm now down to 18mg and still not showing and no symptoms but the turbo is showing me how much muscle I have lost as the effort is hard to sustain at what would have been very easy before PMR and pred. The BP and pulse have hardly changed but the effort for 20 mins is all I can manage. This is after 15 months so what I am saying is I hope you aren't as sensitive to muscle degradation as I am. Have you any means to determine how you are reacting whilst on it?
Oh, I am sensitive to muscle degradation and weight gain. I have gone from a muscle bound fit active duty military man to a overweight bundle of fat. Ok, a little extreme, but you get the idea. This is why I continue to have set backs because I try to exercise. Trust me, I'm not doing much. Now, I cannot even lift up my left arm pass horizontal, and I didn't do anything to cause it. Can't wait to get off prednisone.
oh dear. Snap. It's so depressing given where we were before isn't it. However, don't despair. I'm not. Can't remember where you are on pred mg. dose. Have youy got any issues with swelling of legs, feet and ankles with excess fluid? That's stopped me temporarily while we try to understand it and sort it. Had it for a couple of months now but seem to be getting a handle on it. Meanwhile the turbo at aerobic level is improving things. Will try to increase progressively
Very kind to ask. Other than being exposed to Covid, I'm doing fine. Down to 7mg, have an appointment with Endo to evaluate adrenals to be off prednisone completely followed with a PET scan end of September.
Physically, last weekend had pain return in my pelvis, but only right side plus pain in my left arm. Both got better after a week. Never did anything to cause either one.
Again, I have no idea if I have PMR. I may just have osteoarthritis, poor coping skills and inflammatory markers that choose to be elevated. Don't know. Looking forward to being off prednisone and perhaps move on with my life if God willing.
That's hopeful. Not sure "he's" going to intervene. Depends on your take re. evolution or creation. I think the sulphur and heat individual has more to do with this condition. Good luck with the reduction, but don't push it too fast. Not sure if 7mg is low enough for endo to assess but others know more than me.
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