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

Hi folks,

What started out as shoulder pain in mid June (figured it was bursitis) quickly progressed into shoulder, hand, then both sides of my neck and upper back pain, then the other shoulder too,! And I mean intense pain! I can't sleep. For some reason lying down aggravates my shoulder pain and so I need to sit up every 1-2 hours throughout the night, resulting in me trying to sleep up right. Days later knees affected, then hips. At this point, almost every joint is affected, including feet, hands, wrists, all parts of my knee, all on both sides of my body. I have stiffness and the pain is paralyzing. Always a million times worse in the morning. Specific fingers and toes will be swollen, can't bend them, let alone touch them. Balls of my feet, painful. I've looked up a lot of stuff. To me, it seems like I have either PMR or RA, or sadly, both. Now, here's the kicker... I'm 34 yrs old. The first rheumatologist I saw said it's impossible for me to have PMR because I'm too young... I just don't buy it. There are always rare cases. I am waiting on some blood test results... But I have high inflammation markers with the SED and CPR. Done those tests twice and they were both higher the second time around. Going to see another rheumy tomorrow...I'm really freaking out here. I went from basically being an athlete to someone who can't even walk or sit up on their own. Can anyone relate or have any advice? The pain doesn't allow me to be positive...I cry all the time. I'm still in shock. I'm also afraid I may also have GCA since I check off a lot of those boxes too... And time is a-wasting.... Waiting for results, waiting for the next doc appointment which is always weeks if not months away...

26 Replies

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  • 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.

  • Thank you!! Appreciate the sentiment

  • 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.

  • You are right... Thanks!!

  • 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?

  • Still only a possibility I think. You would have to rule out all the other options quite firmly first. RA can appear very like PMR in the early stages and if it is not established even 20mg of pred might lead to an improvement. And there are other things that might respond some to pred. You honestly can't tell and there are no definitive markers for most of them, especially in the early stages.

  • 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.

  • 5mg is a daft dose to try! But it does sound as if, although it was nowhere near enough to achieve a decent result, it did achieve something over several days - so you got a much clearer result on day 8.

  • 5mg?! What's that all about? As PMRPro says - that's neither here or there. I'm about to reduce to 5mg after starting at 15(then 20mg) and that was 16 months ago........

  • 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.

  • I'm sorry to hear that jwb43!

    I know what your feeling. I have already lost so much...4 job opportunities and its only been about 2 months. I am also in an awkward place... I teach a cycle class 2 days/week and obviously I can no longer ride...I was just on "vacation" for two weeks, but now I have to let my supervisor know what's going on...and I will lose another job.

    What's weird is I feel it in joints and muscles...or whatever is surrounding the area. And it keeps progressing. Initially forearms where fine, now they are an issue. Sides of my neck...seems muscular, even front of my neck (near lymph nodes) both sides will ache.

    I just wish things could move a little faster with docs. I got lucky with my appt tomorrow--there was a cancellation, otherwise I would've been seen in September!

    4 years is a long time...have you had any kind of relief from Prednisone? Is it constantly bad, or some days are "ok?"

    I sincerely hope you get some relief.

  • 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

  • Hi Jess

    sounds like you have been having tough time. I presume they have found evidence of RA markers in blood? I have been dx with PMR for just over a year. Saw rheum in jan/Feb due to reoccurence of symptoms and inflammation.. The result was convinced that either RA or lupus was reason for symptoms. Found no evidence in bloods but this is not unusual according to him. I am taking a dmard now to reduce steroids. Got to say that both steroids and mycophenolate seem to have reduced pain in hands and feet. I had nausea for first 2 weeks on mycophenolate and then head and face pain for next two weeks. My sinuses are inflamed too. I am 9 weeks into dmard and side effects seem to have reduced greatly and have antibiotics for sinuses. I still fatigue but PMR pain largely controlled. I committed to mycophenolate for 12 weeks initially and having forgotten to take morning dose one day the pain came back so am committing another 3mths. I will assess every 3 months for me and how it makes me feel etc. If as, rheumy thinks, IT is RA I have at least it's being treated as part of process of tapering pred.

    Hope you feel better soon and get some proper diagnosis.

  • Hi poopadoop,

    Geez...I'm so sorry to hear that... It can be so frustrating to have a diagnosis change especially when the docs themselves don't seem to have a full grasp. Most of the symptoms of PMR, RA, lupus, and sometimes even fibromayalgia seem to overlap. But when treatments vary for each one... That's what makes me nervous! Why subject yourself to a med, especially because of all the harsh side effects... If you can't be sure!?!?

    If you are able to taper the pred and feel good just on dmards...I think that would be a good indicator that it's truly RA. Because from what I understand PMR is only treated with Prednisone. But then again, I'm pretty new to all this. I'm at the very beginning of my life long journey.

    Keep in touch and let me know how you're getting along. I wish you the very best and continually progress!!

  • The dmard helps steroids work better supposedly so should be more effective as dose lowers. Still treating as PMR for moment but we will see...if it looks like a duck etc. 😂

  • even if it looks like a duck....may not be a duck!!!

    hang in there!!

  • Then it is maybe a zebra story...

  • Why CAN'T you have PMR?

    To some extent there isn't one drug for a, another drug for b and so on - one drug works in several different illnesses, even though you don't think they are related, they are mostly autoimmune in origin. And even within a diagnosed illness different drugs work for different people - there is no single answer.

  • I know, I know PMRpro. But it is hard to find open minded docs out there.

    Although, it makes me feel better to hear you say that different drugs can work for different individuals. Hopefully methotrxate can have a positive effect for me (as well as others who are trying it out at the moment).

    And it is true, we are talking about diseases that all have the same underlying issue-they are autoimmune.

    All I know is this 10 mg Pred is not cutting it for me, so I asked if I could up it to 12.5. It seems to be a little better, two days later and my foot is better, I can walk (at least), hopefully my shoulder pain can subside as well if I give it more time.

    I think the hardest part about all of this is all the trial and error---as you say there is no single answer and I need to stop trying to find one..

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