Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

No problem. I think I’ve answered it once, but even I don’t remember in which thread I mentioned it >_<

I have seronegative spondyloarthropathy (“Seronegative,” meaning it doesn’t typically have a positive indicator in relevant blood tests). It’s an inflammatory arthritis that causes inflammation at place where the tendons insert into the bones, such as the base of the heel, IT band, patellar tendon. It’s in the same “family” of conditions as ankylosing spondylitis and psoriatic arthritis, but SpA affects the tendons in the large peripheral joints.

Thanks for asking.

I have reactive arthritis so it is part of the same family. We might share the same gene HLA-B27 which doesn't confirm anything but makes you more susceptible to spondyloarthritis.

Apparently having one autoimmune disorder doesn't preclude you from having others. It would be nice if there was a law against having more than one autoimmune disorder. It would make things simpler in general.

I have reactive arthritis, uveitis, PMR and a full range of rheumatology problems as my rheumatologist now says.

What type of spondyloarthritis do you have?https://rheumatology.org/patients/spondyloarthritis
This condition is frequently misdiagnosed as PMR and vice versa.

Oral corticosteroids are not recommended for spondyloarthritis. When you have PMR along with it there isn't much that can be done except for high doses of prednisone for a long period of time. That in turn causes a plethora of other medical problems.

I was just diagnosed with PMR. Taking 12 mgs of prednisone. Helped immediately. Dr. also put me on Fosamax once a week. Want to start me on Actemra infusion because I also have diabetes. Anyone else on an infusion? Thanks.

Hello @debjohn67, Welcome to Connect. @lindaf49 @razhuny @lmoross @minijohn @marilyncarkner @maryo1952 and others have posted in other discussions about Actemra infusions and may have some experience to share with you.

Do you keep a daily log to track your level of pain when you get up in the morning along with that days dose of prednisone?

I don’t keep a pain log but that is a good idea. I have been taking the same dose of prednisone since May 22. Pain was virtually gone for the first two weeks and then started creeping back in but very minimal and not everyday

I'm currently doing Actemra infusions.

It was somewhat difficult for my rheumatologist to get Actemra authorized for me since it isn't FDA approved for PMR. Now I'm told the success I have had with Actemra is so good, there's no plan to stop Actemra anytime soon.

I started with Actemra injections every 2 weeks. Injections every 2 weeks worked well and I tapered off prednisone. Unfortunately I had a bit of relapse after prednisone was stopped. I needed prednisone again for a couple of months. I insisted that Actemra was working so I was switched to weekly Actemra injections instead of every 2 weeks.

I had better luck tapering off prednisone the second time while doing weekly injections of Actemra. Just by chance, a monthly Actemra infusion seemed to work even better than the injections. My rheumatologist said there was no reason why I couldn't do infusions if I wished.

I took prednisone for more than 12 years to treat PMR. My list of medications to treat prednisone related side effects grew in proportion to the years I took prednisone. My only regret is that Actemra wasn't tried sooner instead of 12 years after being diagnosed with PMR.

Your mileage may vary but I have been off prednisone for the majority of the past 3 years. Additionally, I don't seem to need 4 other medications anymore.

Yikes, I didn't even think about the possibility of having multiple TYPES of autoimmune arthritis! I have other co-occurring conditions that may or may not be autoimmune in nature, but "only" spondyloarthropathy for an inflammatory arthritis.

My rheumatologist said I'm one of the "fun" ones who's negative for the HLA-B27 gene, negative for inflammatory markers, and no visible sign [yet] of inflammation in my joints on imaging. Apparently, just like with the HLA-B27 gene, it's also possible to have spondyloarthropathy without "objective" evidence on labs or imaging. It can sometimes take months or years for inflammation that would prove it to show up on MRI or ultrasound, so some people remain in pain for a long time if they're not able to find someone who can diagnose it or feels comfortable starting empiric (trial and error) treatment. So thank goodness I found a rheumatologist who was aware of this and was able to make a case for insurance to cover the medication.

My diagnosis was made on the basis of my symptoms, family history (family history of RA, ulcerative colitis, psoriasis and psoriatic arthritis), and empiric treatment with first sulfasalazine (which did nothing), and then Enbrel. My pain was so bad with tendon pain in both heels, both patellar tendons, one quadriceps tendon, both IT bands, my thumb (de quervains tendinitis), and shoulder that we decided to move forward with empiric treatment.

The Enbrel finally made a dent in my tendon pain, though I ultimately switched to Humira.

I don't meet enough criteria to fall into the more specific subtypes--in my chart because of the medical coding, it's listed as "seronegative spondyloarthropathy" because of the above. So it would be considered "undifferentiated spondyloarthropathy" or "peripheral spondyloarthropathy," (because it doesn't appear to impact my spine, but I already had a spinal fusion for scoliosis when I was a kid) depending on which set of subtypes.

I'm glad you got some answers and hopefully got connected with a supportive rheumatologist. I'm so grateful for mine.

Here are a couple of links about spondyloarthropathy. I suspect there are PMR people who might be misdiagnosed. Otherwise, having multiple autoimmune problems is more common than people might think.
https://enthesis.info/spondyloarthritis/spondyloarthropathy_and_enthesitis.html
I like the diagram in the above link because all these conditions have overlapping features. The diagnosis can change over time when one characteristic starts to predominate.

The following link is a good overall description of all of the spondyloarthropathies. PMR as many of the same symptoms so getting a correct diagnosis isn't as easy as it would seem.
https://boneandspine.com/seronegative-spondyloarthropathies/
One has to wonder about all the arthritis that surfaces in PMR patients once they get down to lower doses of prednisone. Doctors tend to call it osteoarthritis but who knows?

There is a reason why prednisone isn't recommended for inflammatory arthritis. Prednisone doesn't prevent the damage caused by inflammatory arthritis. The approach is to achieve remission as fast as possible to prevent the damage.

With PMR, the approach is to treat the symptoms and wait for PMR to burn itself out.

Sounds familiar. I have been on Pred almost a year now. Up and down. Was on 15 and started MTX 12.5. Felt good for about a month while on taper. Currently on 9of Pred but feel like it’s all starting over again. Ugh. Pain in neck and shoulders-just like the beginning. We can do all things right and still suffer. I do have a wonderful RA so this helps.

Prednisone 10 mg and MTX 15 mg once weekly and things are getting worse. Call the rheumatologist for advice.