"Evolution" of Seronegative RA into PMR

I tried methotrexate and have been off it for several months. I couldn't tell any difference. My rheumatologist wants me back on it although she agrees tests show it didn't help my combination of PMR and RA. I am tired of so much medication. Have other people been helped with methotrexate? I am on 5 mg of Prednisone and want to get off that too. She doesn't seem to have any other suggestions except more medication most of which is experimental.

Reactive arthritis derives its name from a "reaction to an infection."
https://www.mayoclinic.org/diseases-conditions/reactive-arthritis/symptoms-causes/syc-20354838
It used to be certain specific infections caused it. More and more I'm reading that almost any infection can cause it. I had a genetic predisposition to have this type of arthritis. When I read how many people develop PMR after a Covid infection, I wonder if they actually have reactive arthritis instead of PMR.

My reactive arthritis had recurring flares that never went away. High dose Prednisone followed by a fast taper resulted in remission each time. I did this successfully more than 30 times. Unlike PMR, when I could never taper off Prednisone until a biologic called Actemra (tocilizumab) was tried.

My daughter feels just like you. She’s been so sick for so long, it’s hard to think she’s signing up for a crap shoot to get maybe sicker, or lose precious improvement time with no results. We still don’t understand why the doc gave her a month of weaning off this giant huge new steroid rx she wants her on, then next will start her on the scary meth. You guys in this group are so kind and useful! I find RA research reports and articles on every aspect do verge on incomprehensible (I flunked pre-med in 1968, but it’s like Klingon to me). I feel like i need to pay a pharmacological consultant (if there IS such a thing) to do a walkthrough of the medication strategies on RA. I have plenty of money to pay for that-does anybody know of such a specialty? I’ll hire somebody if you have any sources…

Jesus God! At 79 I know I’m going to die before I see her improve, but your heroic story is one I WON’T share with her…yet. I think I’d better talk to her husband (who’s being a rock, even if stunned like us all), and see if we can get her a shrink. You must be the strongest person alive! Did you get therapy, find this group really helpful, or just gut it out? I need to drop back I guess, and try to get advice about how to be a non-interfering support…maybe there’s a book y’all could recommend? For sure, there must be tricks of the trade for your relatives/friends/caretakers? I guess just listen and not try to become a research maniac, doctor second-guesser, (control mom). Thank you so much!

No ... I didn't gut it out! I had the support of doctors who understood the gravity of my situation. I took just as much Prednisone during the 20 years before PMR was diagnosed as I did for 15 years after PMR was diagnosed.

We are talking about massive amounts of Prednisone. For example, I once messaged my primary care doctor that I thought I needed to take 100 mg of Prednisone to quell the electric shocks to my face at a rate of one jolt of electricity per minute. He quickly responded and asked me if I was sure 100 mg of Prednisone would be enough! Those electric shocks were caused by trigeminal neuralgia ... nicknamed the "suicide disease"
https://www.mountsinai.org/about/patient-stories/i-dont-even-think-about-pain#:~:text=A%20diagnosis%20of%20trigeminal%20neuralgia,both%20physical%20and%20mental%20anguish.
I think trigeminal neuralgia contributed to high levels of stress that exacerbated everything else. I have referred to PMR as a "blessing" because I started to receive the attention of many specialists. Until PMR was diagnosed I was "winging it" and self medicated with Prednisone.

The other support I received were the patients I care for in a hospital setting. I had an affinity for any patient who needed Prednisone for a variety of reasons. It was like we were kindred souls or something. In the nursing world ... patients on Prednisone were difficult to manage because they tended to have a plethora of medical problems. Many of those patients were much worse off than me!

I will tell you that treating some cases of RA -and even more so PMR - is as much art as science. For instance, for reasons that aren't understood, most front line treatments - whether Humira, Enbrel, or a biologic such as Remicade (the one I am on) tends to be more effective in combination with Methotrexate than either is alone. In my case we had to keep reducing MTX because my liver enzymes got too high. So I don't have that benefit but it’s fine.

Another oddity is that if you have to suspend treatment of whatever drug you're on, there is no guarantee that when you resume you will get the same effect as before.

Most insurance companies want to force what they call step therapy. That means low dose prednisone then methotrexate then you beg for Humira or Enbrel. I’m not sure where you live, but i was lucky to be in NYC when i had onset of the disease - and was able to get a referral after step one (prednisone) to a doc at a teaching hospital who had enough pull with insurance company to take me straight to Humira.
That was 12 years ago and I'm on my third drug - and it is working well (sometimes drugs that were working just quit working). But again, my doc had to go toe to toe with the insurer to get approval.

So get a great Rheumatologist and follow their lead. Mine happens to also have a Pharm-D, which in this area of medicine is a strong benefit.

If you are in New York City, Providence RI, Chattanooga TN or Greensboro/Burlington NC , I can refer a good Rheumy.

Sorry to go on so long.

@ferret911
your admiration of @dadcue is well placed. He has the strongest understanding by training and personal experience of clinical presentations - varied as they are as anyone in the PMR /RA arena. And he's bloody brilliant.

I spent six years working for a large group of Neurologists focused on diagnostics. So I’m more interested in the data and the research. I spend a lot of my free time reading research design and results. Not because i think I can be my own doc. But in hopes i can ferret out the direction research is taking.

To me, if you want to engage for the benefit of your daughter, focus on patient feedback on docs she has access to. Get the best doc with skills and a heart you can assist in finding. But my advice is that you support, not so much drive.
Finally, in the way of unsolicited advice, I have tried concierge docs twice and won’t do so again. It’s a grand premise that in my experience fails to deliver the superior intellect that presumably underpins the practice. Give me a physician - currently or in their recent history, of providing healthcare in a massive, messy, exhausted but intellectual teaching hospital. No one else is as close to the cutting edge.
Good luck and reach out for support when you need it!

Your words of wisdom will be a daily reminder to me of how to help the right way. Tge statistics on the family of ailments are staggering-I’ll do what I can to support the Arthritis Foundation, which I discovered has a phenomenal website and so many different ways to help families AND patients. My thanks to you for my new Daily Read-today her hands can’t function, a new guest at tge party. I read your comments while ruminating how to communicate my concern and love (instead of more obsessed googling). Thank you!,

Oh dont misread me. I, too am Mom of a 50+ - three to be exact. And I am quite certain their choices would be consistently better if only they would give me the wheel 🙂 But even though it sells them short and isn’t actually what i want, my urge to drive is strong 🙂
Maybe your idea to let the husband take a stronger, better informed role is a good idea.

But I was just following your comments. If everyone is peaceful letting you gather and present options, make it happen!
I’m certainly not suggesting you abdicate your care and concern for this month’s edition of Everything Arthritis. 🙂

"Bloody brilliant" is over the top but some of the doctors I worked with certainly were brilliant. I was sort of a middle person ... One realm and most importantly was as a patient and RN. The other realm was more analytical and logical. I worked with brilliant doctors who did medical research who liked my background as a statistician and RN. I think I was a better RN but I liked to try and make sense of the numbers.

The only thing I learned from the medical research side of things is that it doesn't correlate very well with the clinical side of things. The doctors in the intellectual teaching hospitals focus on the research at the expense of the patients they treat. I tried to bridge the gap as much as I could. For the most part ... nothing was logical.