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Surprised and Uncertain: Should I get a second opinion?
Polymyalgia Rheumatica (PMR) | Last Active: Jun 1 4:31pm | Replies (28)Comment receiving replies
I have yet to be diagnosed with PMR but seem to be a poster child. My rheum left the practice of medicine at 38 yrs old. Says a lot. Anyway, after limited labs and an US, she said I wasn't sufficiently inflamed to call it PMR. Suggested PT. But what of this pain? And these huge Baker's cysts that are so debilitating and causing my kneecap veins to bulge? She suggested Tylenol. I realized then and there that she was done. Next rheum appt in same office is mid-June.
In the meantime, I have an appt w/a doc that my daughter uses for long covid. She is a gem, medical but also interested in functional medicine. She is in NYC, and has been such a gift to our daughter. She spent so much time and effort w/her and has put her on LDN, micro-doses at first. It has really helped. Because I can't take steroids for various reasons from heart issues to crippling anxiety, I researched LDN for PMR and found basically only positive things. Yes, it appears it can upset the stomach and that bothers me because I have reflux and a very very sensitive stomach and esophagus.
At any rate, my appt w/this doc is coming up Tuesday (telehealth, I'm in MD. )
I'm not sure how to approach it. If I tell her my whole story and she suggests labs and other tests, maybe even goes right into prescribing LDN, I'm not sure whether to go ahead with it and not see the rheum down here or not.
Am I overthinking this?
Any feedback would be appreciated. Thank you.
Replies to "I have yet to be diagnosed with PMR but seem to be a poster child. My..."
Hi @glinda47, I merged your new discussion to your previous one here:
- Surprised and Uncertain: Should I get a second opinion?https://connect.mayoclinic.org/discussion/surprised-and-uncertain/
I did this so members have more of your background to help support you and the decisions you're facing.
I would keep both appointments for now because rheumatology appointments are so difficult to get. Actually, I’d probably keep both anyway. You may be able to start LDN if that’s what you really want to do and see if you have improvement. Even if it works though, it doesn’t necessarily rule out PMR.
Assuming you continue to have joint pain even after starting LDN if you do it, it would probably be best to consult with a rheumatologist because they may be best positioned to rule in/out other potential diagnoses. LDN might work for PMR (I take LDN for fatigue) and while there’s not much “negative,” case reports are very few and far between (if any, I’m not sure) of people miraculously being cured of autoimmune conditions. Most people I know who take it use it as adjunct to whatever evidence based treatment exists for their condition (PMR, IBD, RA, etc.) My father has PMR and takes LDN for fatigue, and so do I. I also have seronegative spondyloarthropathy, POTS, HSD, and Long COVID. The LDN doesn’t seem to do much if anything for pain associated with those conditions, but it’s hard to take it all apart.
I take Humira for my inflammatory arthritis, and I definitely would not even consider swapping it out for LDN alone. But I have an established diagnosis.
As someone mentioned, if you absolutely can’t take prednisone, there are alternatives, but presumably you’d need an established diagnosis to get that approved through insurance or for a rheumatologist to be willing to take the less common route.
You could probably see both providers if you feel they’re both a better fit for you. I have a rheumatologist and my PCP is a DO with a more integrative approach (she prescribes my LDN.
PS I was also concerned about potential stomach upset with it, but I had no problems with that as a side effect.
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I would use whomever your comfortable with getting a diagnosis. Just me. But you need to make sure your getting the correct treatment. So many things can act like PMR. My Dr. is pretty good but she would not treat me without a Rhumy diagnosis. There are a bunch of tests to rule out other things. There are newer drugs like Kevzara and Acterma designed for PMR. LDN might work I dont know. Seems like it might be better for RA. RA has various drugs to help with symptoms. The one "cure" for PMR symptoms has been Corticosteroids. Those come at pretty high risk of side effects and addiction. They stop the pain immediately but if something else works, go for it. You might keep your appointment. They are hard to get and maybe you will be pleasantly surprised. Here is a generalized description of PMR.
https://www.uspharmacist.com/article/polymyalgia-rheumatica-a-severe-self-limiting-disease