Rheumatoid Drs

Posted by bren0718 @bren0718, Mar 8 10:08am

I was diagnosed with PMR in August of 2023. My family doctor has been all I have seen about my disease. I was ok with her until I came on this support group and now realize I dont know much about the disease itself or about tapering off of the prednisone. In December I was diagnosed with severe osteoporosis. My Dr told me to start tapering off quicker . I have gone from 20 mg to 7.5 . She never told me at what rate to taper or that if I was having a hard time I could go back up for a bit and then try again. I think I need to see a specialist after seeing all your comments. I have only had blood work done the one time and don’t understand the numbers that people are posting. I feel I have done myself a disservice by not seeing a specialist. Do any of you just have your family physician treat you ?

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

pb50 | @pb50 | Mar 11 4:42pm

In reply to @dadcue "I don't think they really know what PMR is. Perhaps a combination of autoinflammatory and autoimmune...." + (show)

That’s consistent with my experience too. I had a good long stretch of over a year where my RA was well controlled, no flares, no symptoms other than hand weakness, which never improves. I asked my Rheumy whether we should think about reducing dosage or increasing intervals of Remicade and he said emphatically no. “We’ve spent three years managing symptoms and titrating dosage for one year of stability. Don’t change anything for a while”. 🙂
A month later I had a big flare and he put me on 20mg of Prednisone and tapered me down

I have had two biologics fail - Humira because I could not tolerate the dosage of methotrexate required to avoid antibodies to it, and Enbrel failed for reasons unknown.

pb50 | @pb50 | Mar 11 4:47pm

Duplicate

pb50 | @pb50 | Mar 11 4:49pm

@bren0718 … FYI I sent you the name of a Rheumatologist in Lynchburg… may be helpful.

bren0718 | @bren0718 | Mar 11 6:04pm

In reply to @pb50 "@bren0718 … FYI I sent you the name of a Rheumatologist in Lynchburg… may be helpful." + (show)

Is it Dr Kenny? Just heard that he is retiring which leaves a lot of people scrambling to find someone new. I will most likely have to gout of the area.

pb50 | @pb50 | Mar 11 7:52pm

Damn he seems too young to retire!! Well he’s the only one I saw.

DadCue | @dadcue | Mar 11 8:38pm

In reply to @pb50 "Damn he seems too young to retire!! Well he’s the only one I saw." + (show)

He looked like a medical student in the link you posted.

https://cdn.prod-carehubs.net/n1/748e8fe697af5de8/uploads/2024/03/IMG_2344.png

Then I found this:

https://www.orthovirginia.com/providers/eric-r-kenny/
Eric R Kenney: University of North Carolina in Chapel Hill, Bachelor of Arts in Chemistry, 1981

1981 was when I graduated but I spent 4 years in the military before starting college. I'm almost 70 so I suspect he is 65 at least.

@bren0718
Maybe this one but she looks young too.
https://www.orthovirginia.com/providers/emily-l-gilbert/

Emily L Gilbert MD, PhD
Mayo Clinic, Rheumatology Fellowship, 2022
Mayo Clinic, Internal Medicine Residency, 2020

pb50 | @pb50 | Mar 11 10:22pm

In reply to @dadcue "He looked like a medical student in the link you posted. https://cdn.prod-carehubs.net/n1/748e8fe697af5de8/uploads/2024/03/IMG_2344.png Then I found this:..." + (show)

I was in the marine Corps! Vietnam era.

pb50 | @pb50 | Mar 11 10:24pm

In reply to @dadcue "He looked like a medical student in the link you posted. https://cdn.prod-carehubs.net/n1/748e8fe697af5de8/uploads/2024/03/IMG_2344.png Then I found this:..." + (show)

Wonder what her PhD is in? My Rheumy has a PharmD in addition to his MD. I think for auto immune illness that’s a great combo.

pb50 | @pb50 | Mar 11 10:27pm

It’s University of Mississippi, Doctorate in Physiology and Biophysics, 2016..
That’s a value add too.

emo | @emo | Mar 12 12:50am

In reply to @bren0718 "Yes. But having a hard time so I think I’m going to go back up to..." + (show)

It seems like the chorus has all chimed in about the importance of a rheumatologist. I really hope you’re able to find someone. I know it’s usually a long wait, but they’re so much better positioned to help with the how it all fits together. Maybe you can see them once and after that if you need follow-up, you can do telehealth?

It can be dangerous or at least risky treating PMR without a specialist because of the symptoms, side effects to prednisone, etc.

It’s pretty common for people with PMR to need to supplement calcium and vitamin D, and/or start a medication preventatively for bone loss. My dad didn’t have osteoporosis, but because of his age, his rheumatologist started him on Fosomax as others have mentioned.

It may be worth asking your primary about that too if you’re not already covered by your treatment for osteoporosis.

Wishing you all the best.