In search of diagnosis and help...PMR or RA

I have every sympathy but not knowledgable enough to offer advice but I expect someone will be along pretty soon. All good wishes for your visit to the visit to your Rheumy.

You obviously do have an autoimmune disorder - and I suggest you don't offer the next rheumy your own diagnosis. There are very very few doctors who would consider PMR in someone your age - yes, I know, it could be, but it would be very unusual. Let them investigate it for you.

Neither the symptoms nor the blood tests are specific to PMR and PMR itself has several underlying causes - PMR is just the name given to the set of symptoms. It is due to an underlying hidden disorder and there are several different ones.

Be patient and see what this second rheumy comes up with - and be assured, you are by no means the only young person to be in this state. Once your new rheumy makes some suggestions we'll provide suitable advice.

Well sweetheart sounds like one to me I was diagnosed 2 months ago had arthritus in hip long ago had hip replacement but started getting Pain in shoulders back with pain going down both arms swollen fingers and toes pain in both hips and knees after long walk was advised by a medical friend to get diagnosed for polymyalgia and am now on steroids Started on 15mg am now on 10 mg I'm 67 all my pain has gone and swelling has gone down also lost weight feel like a new woman depression is part of the illness by the way get back to your docs also get tested for vitamin D hope this helps

Highfield 99-

I'm so happy to hear that you are doing good at this point. It's nice that you didn't have to start on a higher dose of Prednisone. I hope the progress keeps up for you!!

Thank you for your comment.

Hmmmm - well, if you were twice the age you are, like me - I'd say you're onset of symptoms pretty much mirrors my own and that WAS diagnosed as PMR........

PMRPro - if this responded well to say, 15-20mg of Pred- would you say that PMR is the likeliest candidate here - or still only a possibility?

I would follow PMRPro's advice. But you have all my sympathy and I totally recognize your description from how I experienced the onset of PMR - especially all the crying - I never knew I could cry so much or that so much pain existed. Hang in there and hopefully your rheumatologist will be able to help you in the right direction.

Oh poor you!! I agree it does sound like RA or PMR. I well remember that restless painful turning in bed. Statistically you are young for PMR but it is not unheard of. Have you had any bad viruses of late, or travelled in exotic places? Sometimes the years in the run up to this disease state provide a clue to what our body is doing.

Have you been given Prednisalone? Did you get the spectacular relief?

That seems to be the clincher.

I do hope you get a firm diagnosis soon and your former athleticism prompts a speedy and complete recovery. Let us know what happens Jesnaska. Courage! 🍀

Thanks for all the responses. The pain is so excruciating and to have it everywhere is just so overwhelming. After my very first visit to rheumy, he gave me 5mg Prednisone to try for a few days. It didn't seem to make a significant difference... although he said that if it were effective for me, it would be obvious, like a "light switch turning on." I stopped taking it after 6 days. On the seventh day...same as before...on the 8th day--WHOAH-- was one of the worst yet, so I decided to take the Prednisone again (rheumy said I could if I had a very bad episode). In a matter of 3-4 hours, I was much better! It felt like that obvious "light switch." So I'm staying on this 5 mg until I see other rheumy in 2 days. It's odd because I have moments where I feel ok, not perfect, but definitely manageable levels of pain and at least I can walk...and hold/pick things up. Then there are times where, as I'm sure you all know....ooof...just don't know what to do.

I'm afraid I can't comment in terms of a diagnosis but I do have every sympathy. The wait between appointments, tests and test results is so frustrating. Took 9 months for my diagnosis and that was with me hassling and being proactive. Like you I have I also experienced the frustration of the overnight transition from being very fit (I wouldn't say I was an athlete but I was running and swimming several times a week) to barely being mobile. I thought I was young for pmr at 52 so you are certainly an unusual candidate for it. However they have this term "atypical" pmr that can be used for the likes of us. 5mg pred made no difference to me but 15 certainly did. All the best anyway.

Your story sounds very similar to mine it can be very frustrating very depressing especially when you're very Physically Active and then all of a sudden it all comes to a halt. I've been fighting mine for 4 years and I had to stop Paul my physical exercising get rid of my drums stop playing music can't go for a walk with my wife anymore can't do much of anything. If I do it just makes the pain worse. Your sounds like a combination of RA and PMR. But then I can only go from my own experience my joints don't seem to hurt it's just in my muscles and it's always bilateral. Wishing you the best on your treatment decisions.

Your pain is so similar to mine that I truly empathize. It took 2 months before I was given Prednisone and I was paralyzed with pain. It took two months to see an Ra and the doctors assistant was useless. I was even on OxyContin and it did nothing. I would go

Go With PMRPros advice and know you will get your youthful strength back again in time. As more and more people are getting auto immune diseases the likelihood of the age will increasingly include lyounger people. I hope it will be PMR and not Ra. You may never have to go through this again. Avoid all physical and mental stress and if you are able to ,start to inquire about disability help As your type of work is unlikely sustainable. But don't stress that now. Soon you will feel better and find other solutions. Many work part time or from home. Younger people on this seem to respond faster and are able to exercise but you can't overdo. Getting well is first and foremost. Let us know how you are doing.

And yes the pain moves around and is oddly strange. If it's PMR she

You Re put on a proper dose you will feel significantly better ina few days as relief from the severe pain. Not as good as your old self. It a disease you can cope with. We all complain but you will get past the worst soon.

Hi guys.

Been laying low trying to deal with everything. Lots of emotional ups and downs, including days that are more painful than others, especially me feet! What is going on there?

In total, I have seen 3 different rheumies and all say it is impossible for me to have PMR. So there you have it. I personally don't believe it. But what can I do at this point. If anything, maybe it is a touch of both PMR and RA.

First rheumy (out of insurance network) diagnosed me this week as having RA. I have done a ton of blood work, ruled out a lot of viruses, and this is his conclusion.

I am also seeing one more rheumy (within my insurance) and since she is on vacation until Monday. I have no idea what her take is on all this. At first, she wanted to rule out any viruses so she put me on 40 mg pred and I was to taper it in a matter of a 6 weeks to 5 mg. But during the course, my liver enzymes went up dramatically, so she pushes aside all my autoimmune issues to tend to my liver. This meant tapering more quickly...this was hard on me. I am in more considerable pain now. But in a matter of a week, I had my liver back within normal range. So I am waiting for her "real diagnosis" anytime now.

First rheumy had me start methotrexate (10mg/week for a month) along with 1 mg folic acid daily. I was nervous about this drug...but took it last night and although I felt the effects kick in within 5 minutes...I think my body dealt with it relatively well. Major headache and weird pressure in my face, like sinus. But much better today. My rheumy claimed that even if I had PMR, or Lupus...this drug would cover all the bases. I don't know about all that. I just hope that he is correct in diagnosing me with RA and I am not taking this toxic drug for no reason. I am sure I will be on it for a while, if not forever.

I wanted to let you all know what's going on. I sincerely hope you have all seen some brighter days and are doing relatively well!!

I feel like maybe I shouldn't be in this PMR forum, but I appreciated so much all your feedback and want to be here for everyone as well.

Jess