Update on diagnoses-now

I wish more people with RA would stay with us. Their experience with getting diagnosed and treatment is invaluable to people with PMR. We still have a lot in common. I have a type of seronegative nflammatory arthritis and PMR. I'm not the only one with both. Treating PMR was my main focus for the last 20 years.

Let me guess ... the monthly infusion you will get is a TNF-inhibitor like Humira or Enbrel.

I'm surprised Kevzara which is an IL-6 inhibitor isn't used more often for seronegative inflammatory arthritis. Kevzara is FDA approved for both PMR and RA along with other types of inflammatory arthritis. There are many overlapping symptoms of inflammatory arthritis and PMR but prednisone isn't the best treatment for inflammatory arthritis.

@dadcue
Thank you so much for your feedback and I will stay with this group.
After I finally got a Rheumatologist, I was started on Methotrexate. I sorta managed two weeks but I got horrible diarrhea. It took weeks for my system to settle down.
My infusion medication is Orencia and just had my first dose yesterday, 7/20/26. My most noticeable reaction was my bladder was hyperactive for over 12 hours. Clear urine mostly during this time.
I will continue to give updates but would like to hear from others that have taken this medication. Thanks!

@dadcue
Both kevzara and actemra are approved for RA if I remember correctly. Kevzara is approved for PMR and actemra for GCA. Both are similar in being IL-6 inhibitors. Kevzara was undergoing testing for GCA but the testing was cancelled because of covid and that seems to be the reason why it's not approved for GCA. Actemra is prescribed over kevzara for PMR when GCA is also involved. It seems that RA, PMR and GCA are all relevant to this conversation because of the Rx.

@betsyhase

Mayo Clinic has good information about Orencia. I don't know anything about it but I hope it works for you.
https://www.mayoclinic.org/drugs-supplements/abatacept-intravenous-route-subcutaneous-route/description/drg-20070783
I don't understand how it is determined which biologic will work and which one won't work other than the trial and error method. When you have both PMR and inflammatory arthritis it might be difficult for a single biologic to work for both conditions but you can't take 2 biologic medications.

I tried Actemra first and it worked well for PMR. When I switched to Humira, it didn't work so well for me. I needed to choose which biologic worked the best for me and I chose Actemra.

There are several kinds of seronegative inflammatory arthritis conditions and the symptoms overlap with PMR symptoms. I have both PMR and inflammatory arthritis and I can't tell which condition causes the most pain. However, inflammatory arthritis is said to cause more damage.
https://arthritissj.com/why-seronegative-rheumatic-diseases-are-difficult-to-diagnose/

@kjoed53

Yes ... Actemra and Kevzara were both originally FDA approved for RA. However, IL-6 inhibitors probably aren't used as often as other classes of biologics to treat RA.

" IL-6 blockers historically have not been used as first-line treatments for RA (because they were developed later). They’re usually tried after other treatments such as methotrexate and anti-tumor necrosis factor (anti-TNF) drugs have failed to relieve symptoms and/or adequately control disease activity."
https://www.arthritis.org/news/fda-approves-new-rheumatoid-arthritis-biologic-sar
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There has been extensive amounts of research done to find alternative uses for both Actemra and Kevzara. The cost of doing the research to get FDA approval is prohibitive. Being the "first" to get FDA approval for a diagnosis has a competitive advantage. Even though a biologic doesn't have FDA approval that doesn't mean it won't work. It usually only means the research hasn't been done to know if it works or not.

Imagine the wasted time and money when a medication doesn't work for a particular diagnosis. I was involved in some research studies which were suddenly terminated because the preliminary data wasn't looking very good.

I'm sure many studies have been stopped halfway because the final results would have been reputationally damaging. I'm using LDN off label now. Off label use is usually only a problem when the insurance company won't cover it and the personal cost is prohibitive.

@dadcue
I was hopeful the Orencia was going to work for me. My joint pain was already feeling better but first bladder issues had me concerned and now bowel issues are starting. I don't know how many people react like I do but obviously this medication is not going to work either.
Very depressing!

@betsyhase

Could it be Enteropathic Arthritis? It is another type of seronegative inflammatory arthritis.
https://my.clevelandclinic.org/health/diseases/23166-enteropathic-arthritis
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If you have a gastrointestinal infection ... it could also be Reactive Arthritis.
https://www.mayoclinic.org/diseases-conditions/reactive-arthritis/symptoms-causes/syc-20354838
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I'm just guessing and I don't really know. I was diagnosed with Reactive Arthritis a long time ago. I was very sick and wound up in the emergency room because of nausea, vomiting and diarrhea. The acute pain was also torture.

@dadcue
Thanks for your feedback. I will research the conditions that you mentioned and see if it fits.
I was also wondering if I was dehydrated after the infusion if that made my body react that way? I know my fluid intake was pretty low.

@betsyhase
Hydration is important for everyone but especially important for those of us on meds for autoimmune disorders and cardiology issues which most of us have as we age.