I feel like I'm in limbo. I had my first appointment with a rheumatologist mid-January. She's lovely, but I don't agree with her diagnosis. She believes I have sero-negative RA; I still believe I have PMR. Other labs ruled out cancer, celiac, and lupus. She stated, at 59, I am too young for PMR
After 2 months on 20mg prednisone, my sed rate dropped from 48 to 33. My pain is mostly controlled, and is muscle related; I fatigue easily when I over do it. X-rays show osteoarthritis in my feet, hands and shoulders, but no rheumatoid nodules.
Her plan is low dow methotrexate for one month, and then begin to titrate down the prednisone. Initial titration is 2.5mg, and hold for a month before going lower. My next visit is in April.
Thoughts? Thanks you in advance,
Tracie
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testadura
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Morning, sorry to hear of your struggle, but it is all very familiar....others who are in the know on here will no doubt tell you, you are not too young for PMR, I was just 60....many have been younger. Also my sister has RA, and was zero negative when tested....she doesn't have nodules either!......She was started on MTX but couldn`t tolerate it....I am surprised you have been put on it so quickly. As I say others will come along to advise you of this minefield we travel through.....
I know that RA and PMR can present very similarly. In your case I would still be inclined to use one of the slow tapers for Prednisalone described on here, never more than 10% of your dose. I would dispute that 59 is too young for PMR. It seems slap bang in the middle of average to me ( supported by everything I have read). I would be questioning the value added by Methotrexate, if it was me.
Read, read,read and stick with us here. It really pays to be a clued up patient. This is not a sexy disease and ignorance swarms around it. My unscientific feeling is that this autoimmune disease is striking people younger and younger. As if it was a kind of burnout from the sheer stress of modern life.
I was 55 when dx with PMR. I am on a dmard that rheumy started last June after 12 months of pred and up and downing as markers moved up and down.
There is nothing wrong with asking for a second opinion and you don't have to take any medication you don't want to.i would be back to the gp go to get referral if possible and a shout out on here to "goid" rheumy near you. Also download and keep copies of any research to support your own experience. I think it was @heronns who posted lots of articles about a week ago. Good luck and keep asking.
First of all, find yourself a rheumy who knows that the guidelines say "over 50" for PMR. I was 51 when mine started though it wasn't diagnosed for 5 years. I have always been under the impression there were criteria to fulfil for a RA diagnosis - so, since I assume you are in the US, what will the insurance say?
I can't even imagine how awful it was to go undiagnosed for 5 years. I quickly lost patience with the pain, and I only waited 2 months before my GP started prednisone. And while I'm particularly petulant and whiney about my situation, I recognize how much more difficult other's paths have been.
I agree; I was rather off put by the age thing! I am in the states, and insurance will not be a problem. It seems I meet enough of the criteria for RA to support the diagnosis, multiple joints affected on presentation, but PMR still makes more sense to me. The joint pain cleared up after changes to my diet, but the fatigue and upper arm and shoulder pain remained until I started prednisone.
What joints? I had a sore knee and my hands and feet were excruciating - but no-one ever mentioned RA. A silly rheumy wanted it to be ankylosong spondylitis or psoriatric arthritis - until all his tests said no - but still wanted to put me on sulphasalazine (which makes you photosensitive, don't go out in the sun) just as I was about to move to Italy. Which was the salvation - found another doctor who said she was convinced enough it was PMR.
I'm glad you found a doctor that diagnosed PMR! Are you still in Italy?
I woke up one morning with stiff and painful bilateral shoulders, painful elbows, wrists, thumbs, knees, and right hip. Neck was stiff and sore, but for me that tends to happen more often than not, depending on how hard I thrash my body at work; my knees, also, are touchy, but I carry around too much weight, and it is not a new symptom, instead one that comes and goes.
All but my shoulders responded to dropping carbs and sugar. Gentle massage of my arms helped somewhat, but only when my massage therapist spent an hour on one upper arm. Fortunately, my insurance covers massage, for I went times weekly when this started! I've worked with the same therapist for three years, and she is still astonished at the ropes that used to be my deltoids!
It was actually 6 months just with a birthday in the middle. Unfortunately I am on the other side of the country and can't make any recommendations for doctors. I found mine (who I like) at a well known teaching hospital. Is there one close enough to get to? I travel just over an hour and a half but since I only go every few months it's ok. I clear the day and now stop to do something fun in the area. Earlier days I came home and had a nap. Best of luck to you on this crazy journey
Hi testadura. Sorry about your plight. I was 59 when diagnosed but had had it about a year by then. No one ever mentioned age just went by my ESR/CRP the symptoms and my response to pred. All the best cc 🤗
Hi TestaDura, If the Doctor thinks it is RA maybe you could try Actemra/Tocilizumab. I get it for GCA/PMR. It is not prescribed for PMR but may be better than Methotrexate. Your Forum name is great (if you speak Italian)!
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