Misdiagnosed with PMR??

[Navion]

So it appears that I may have been misdiagnosed. I started prednisone nearly two years ago when I was finally diagnosed with PMR after running around to different medical practioneers for a year. However, my rheumatologist was never really convinced it was PMR because prednisone never really helped me as much as it should have and I can't seem to taper well at all. So she kept running tests.

So, quite by accident, when having a CAT scan to look for blood inflammation, it was discovered that I had sacrilitis. A followup MRI showed bilateral sacrilitis and fluid in the marrow. So my rheumatologist now suspects some sort of spondyloarthritis like ankylosing spondylitis (AS). One further way to help the diagnosis was to try me on NSAIDS, which generally work well for AS and not for PMR. I have a bleeding disorder so the safest one is Celebrex. I started it Tuesday and what a difference. My stiffness went away and almost all my pain. I don't like taking it since I am still on 7 mg of prednisone, but I'm hoping I'll be okay and that it will help me get off prednisone which is not a treatment for AS so there's no reason to be on it.

I'm suspecting that I'll be put on a biologic at some point since staying on Celebrex long term when I have a bleeding disorder is not likely. Just thought I'd tell my story and say that if prednisone isn't helping you as much as it should, keep looking.

[PMRpro Ambassador]

Another AS patient - I know several. And you are quite right: if pred doesn't work well and you can't reduce the rheumy should look for something else. To be fair, my fairly useless second rheumy DID check for AS but there was no sign despite me having quite bad sacroiliac problems. He wanted it to be psoriatric arthritis - no evidence for that either! Pred was a miracle in 6 hours but I struggle to reduce the dose.

[Navion in reply to PMRpro]

For sure, pred was no miracle for me. It never completely reduced my inflammation and only reduced my pain by about 50% even at higher doses.

[PMRpro Ambassador in reply to Navion]

A minimum of 70% improvement is what should be expected - less than that and you do have to think "Is this really PMR?" - or at least, the PMR we talk about here. PMR isn't the disease though - it is the outward manifestation of an underlying disorder.

[Navion in reply to PMRpro]

There is non radiographic AS which is more prevalent among women. You still have AS but it doesn't show up on images.

[PMRpro Ambassador in reply to Navion]

Do the NSAIDs relieve the pain and stiffness? Though it doesn't really fit - I have a scoliosis and intermittent sacroiliitis but no real spinal stiffness. And pred was magic where NSAIDs had done nothing,

[Navion in reply to PMRpro]

So far they are relieving the pain and stiffness. I'm on celebrex. Two years ago I tried meloxicam and it did nothing. According to people on an AS support group, many had to try different NSAIDS before they found what worked.

[PMRpro Ambassador in reply to Navion]

Not that they are really an option for me - I'm on anticoagulant therapy so the bleeding risks are too high.

[Navion in reply to PMRpro]

If only we could have only one problem at a time.

[PMRpro Ambassador in reply to Navion]

Haha - it doesn't work like that though! Not only does misery like company ...

[Navion in reply to PMRpro]

Exactly. I have a bleeding disorder so NSAIDS are also risky for me, but Celebrex is the safest of them with regard to bleeding. If the AS diagnosis is confirmed by the Mayo Clinic, I don't think the treatment plan will include Celebrex indefinitely. I'll probably be changed to a biologic, which have their own issues, of course. Damned if you do.....

[PMRpro Ambassador in reply to Navion]

I know a couple of people with AS who were on Celebrex as much to see if that worked to partly confirm the AS and while they decided which of the 5 TNF-inhibitors they wanted to start with! It wasn't long though. And they never looked back ...

[SheffieldJane]

Thank you for sharing this. I wish you so much well. Glad that wisdom prevailed! 🌷

[piglette]

I am so glad they have now diagnosed you correctly, what a relief for you. They estimate that up to 40% of people are misdiagnosed.

[Navion in reply to piglette]

I guess that's what happens when there are no definitive tests.

[Coffeebeans]

So glad you have stumbled on the right diagnosis now. The right treatment obviously makes.a huge difference to.quality of life and managing symptoms.

I get good relief from pred but struggle to taper and AS is something they looked for with me too, as well as lots of other tests including RA. No evidence found so still on PMR here.

Best of luck!

[baxternoni]

I was diagnosed with AS over 30 years ago. I had problems for 10 years before I got diagnosed. I tried almost every NSAID that was available. They did nothing for me, just gave me an ulcer. I found a rheumatologist that is one of the top doctors in AS. I tried various Biologics and the one that finally worked for me was Humira. I was on it for nine years. It gave me a good quality of life. My SI Joints are fused, but thankfully not my spine. I stopped using it when I had heart surgery and my AS was in remission for many years. I get flares here and there but all I need is some extra strength Tylenol. I now have been diagnosed with GCA so I am on Actemra now. Learning about GCA now and this group helps me understand it better. Good luck.

[Navion in reply to baxternoni]

Thanks for the info. Sorry about the GCA. I hope things go well. I've never heard of Aptera for GCA, just prednisone. Is it a new treatment?

[baxternoni in reply to Navion]

Actemra has been out a couple of years. It is the only medication used to treat GCA besides prednisone. It also is used for RA. It has a longer name that starts with the letter T. I don’t know how to spell it. We call it Actemra in the US.

[PMRpro Ambassador in reply to Navion]

Then you maybe haven't read many posts on the forum recently - though we often call it tocilizumab which is what we usually call it in the UK. That is the substance name that never changes wherever you are in the world, brand names do.

[baxternoni]

Lol Dadcue, too hard to say and spell! It would take me months to learn. Actemra is easy to say and spell. My doctor uses that name probably for the same reason.