Rheumatoid Drs

My general doctor is a board certified internal medicine specialist. Before I had a diagnosis, I also saw a sports medicine specialist, a board certified orthopedic surgeon at a prestigious ortho practice. Both of them ordered basic rheumatoid labs and referred me to a rheumatologist. The rheumatology practice has a geriatric rheumatologist and that's who I see. He has many PMR patients. I adore him. He is wonderful - he's eager to explain and educate me. I highly recommend getting care from the most sophisticated provider available to you.

I waited 6 months to see the geriatric rheumatologist. In the meantime, my doctor had me on Meloxicam and that was all he would do. The orthopedic surgeon referred me to PT while I waited and that helped a lot, since I could barely walk at that point. But waiting for the right doctor is *totally worth it.*

Great. I’ve done that for a while but I recently transitioned to low carb but without the target of getting into ketosis - and focusing on low fat to try and get off statins.

@pb50 I'm curious about how you use prednisone for flares of RA.

I used prednisone for flares of multiple problems for more than 30 years. Every problem was treated with prednisone differently depending on what happened.

Uveitis flares (more than 30 flares at last count) were always treated the same way--- a prednisone dose of 60 mg to start. I could usually taper off in a month. My ophthalmologist would say to call him "if I had any problems tapering off" but I never had any problems. If I didn't have any concerns, my next visit was a month later. The inflammation inside my eye was "clear and quiet" after a month of prednisone.

I made sure I saw the same ophthalmologist all the time because the approach caused some controversy with other ophthalmologists. Other ophthalmologists said I needed frequent visits until uveitis was resolved completely since uveitis can cause vision loss. They also said that I should NOT be "self medicating" with prednisone. The ophthalmologist who I saw most of the time said, "I was skilled with prednisone tapers" and had a lot of experience taking prednisone.

Reactive arthritis flares were usually concurrent with a uveitis flare. I called the reactive arthritis flares -- "pain for no reason." When I had the mysterious lower back pain and large joint pain without uveitis, I usually took 20-30 mg and tapered off when the pain stopped. I didn't see any need for a rheumatologist because I didn't think anyone would believe me about the pain. I could hardly believe this pain myself!

I self medicated reactive arthritis flares with left over Prednisone prescribed for uveitis. The pain stopped quickly so I only needed Prednisone in short bursts of a week or two. These flares happened regularly. If the reactive arthritis flare didn't stop, I would eventually have a flare of uveitis and saw my ophthalmologist who prescribed the 60 mg dose for uveitis.

Trigeminal neuralgia flares: I would take higher and higher doses of Prednisone based on the number of electrical zaps to my face. We are talking a thousand zaps some days and no zaps at all other days. All I knew was that the number of zaps decreased when I took prednisone. The zaps were mostly random but with known triggers. I had no idea how much Prednisone to take on any given day. I knew how many zaps I had the day before and based my prednisone dose on the day before. A neurologist was adamant that trigeminal neuralgia wasn't treated with prednisone so I stopped seeing a neurologist. The neurologists I saw didn't know what was causing my trigeminal neuralgia until technology improved and neurosurgery was done.

Trigeminal neuralgia was my inflammation alarm. Either that or my inflammation levels rose because of stress from the facial electricity. Sometimes Prednisone didn't work and I needed an emergency room visit because the electricity wouldn't stop. There was a correlation with my inflammation markers and the number electrical zaps/ electricity.

A PMR diagnosis was a late addition after 20 years of the above symptoms. I had this bright idea that I wasn't going to take prednisone anymore and threw away my entire prednisone stash.

The PMR pain started first in my shoulders and spread everywhere when I didn't have any Prednisone to take. I blamed PMR on a lack of Prednisone but other times I blamed Prednisone for PMR. I go back and forth on that one.

After PMR was diagnosed, a rheumatologist said I would need Prednisone daily for a year or two. I needed an average dose of 25 mg of prednisone daily for 12 years until Actemra (tocilizumab) broke the spell.

Your history amazes me. Mine is a bit more linear. I believe I told you that my onset of RA was horrendous and acute - woke up with numb stiff hands that mostly resolved within a couple of hours, back the next morning but this time other joints joined the chorus - knees and ankles - and the third day I had shoulders and hips. Pain a 9. Couldn’t roll over in bed without agony. Couldn’t open a door or even a bottle Of water. Had to put shampoo bottle between my knees to squeeze it out. I Picked a Rheumy based on location who gave me 5mg of prednisone that might as well have been water. Added methotrexate. So now in addition to pain I have nausea.
At the time I worked for an international Bank in NYC and my boss was a senior exec. They had a clinic just for Execs and he walked me to their office and asked them to “fix me” - He relied on me for a lot and I wasn’t remotely productive.
They in turn set me up with an awesome Rheumy at Hospital for Special Surgery. She put me on Humira (and laughed when I told her my insurance wouldn’t approve it until I did six months of step-up medication. She talked to them about how my initial clinical Presentation was associated with more severe disease and I went home with Humira. And she upped the Prednisone to 20 mg and gave me a tapering schedule ovwr several
weeks but I wasn’t to start Tapering for a week to let Humira get started. So I did all that and it Was miraculous.
We did talk that my presentation was more like PMR in terms of anatomical sites and pain severity, but we would watch it. I was sero negative and knew Nothing except it didn’t hurt anymore.
Since then I have had infrequent flares where either the Biologic quit working or it just wasn’t enough or the moon was rising or who knows why. In those cases I was able to supplement. supplement with Prednisone. Almost always at 20 mg
Loading and then tapering off in roughly 3 weeks. I’ve never had a case where pain worsened during That tapering.
In 2017 o moved to NC and started with a new”Rheumy” ( I say dubiously) who told me I did not have RA - It was all osteo - but did hand X-Rays and blood work to confirm for me. And damn if my RA Factor wasn’t positive. So I swapped Rheumy to the guy I have today
He started me on a Remicade because he felt he had more
Flexibility with dosing and administration schedule. We’ve fine tuned both multiple times over the last 7 years. And I get about 1-2
Flares a year where everything burst like hell. What is different about me according to him is that I rarely have significant swelling- Just not a part Of my symptom profile. But I frequently have more involvement in shoulders, ankles, elbows and knees than I believe is typical… and of course hands and wrists . And weakness exacerbation is typical. Anyway - he starts with 10-20mg depending on how widespread and severe it is - and taper within A month.

Hope that’s helpful

I am taking the Evenity shots once a month for the osteoporosis. I can take them for12 months. I have not heard of Kevzara. I’m going g to look into and see if maybe this is something I can take. I know I need to get off the prednisone as soon as possible but being able to function take priority. I went up .5 mg yesterday and today and I feel so much better . Will wait a few days then go back down. I feel like I need to do the physical to help with the osteoporosis.

There are a few peoples here who are on it - it’s a biologic like Humira and Enbrel but formulated more for PMR - and perhaps other diseases. I don’t know much about it. You could start a new post to tease out who is on it and what their feedback is.

Knees, shoulders, hips and ankles are all "large joints and typically aren't the presenting signs of RA. My impression of RA is disfigured hands.

"Early rheumatoid arthritis tends to affect your smaller joints first — particularly the joints that attach your fingers to your hands and your toes to your feet.

As the disease progresses, symptoms often spread to the wrists, knees, ankles, elbows, hips and shoulders. In most cases, symptoms occur in the same joints on both sides of your body."

The way you describe the onset of symptoms sounds eerily like reactive arthritis to me. You don't have to be aware of any infection to have reactive arthritis. Often the infection is long gone by the time symptoms of reactive arthritis begin.

Were you ever tested for HLA-B27? A positive result would not be definitive of anything but it might be useful information.

You only need to have the HLA-B27 test once. I don't think doctors like to request this test because it is probably expensive. Also, there isn't anything they can do about it if your HLA-B27 is positive. Being HLA-B27 positive won't prevent you from being diagnosed with something else like RA or PMR later on.

PMR is more of a syndrome rather than an exact diagnosis. My understanding of PMR is that it is more of a conglomeration of many things which isn't well defined. I think doctors call things PMR and throw Prednisone at the problem. When people have a rapid response to prednisone it is like confirmation of PMR. However, a rapid response to Prednisone doesn't confirm anything either.

My ace Rheumy in NYC told me when she took my history that my first introduction to joint pain that I had recounted as gout was very likely to have been my first symptom of RA. My current Rheumy recognized that when I have flares always involves large joints - Sometimes exclusively so. So I don’t know what to think. I told you I think that my son had reactive following knee surgery and went from a 22 yo to a 82 yo man overnight. We took him to a Medical College hospital where they actually had a unit for post surgical event management and immediately said “reactive arthritis”’. But once they cooled his down it never bothered him again - I mean he is just a skeletal mess but not from arthritis.

Does reactive arthritis respond to Remicade? Because except for this infrequent Flares I’m pretty well controlled.

The only doc I’ve had that might have tested for that was in Providence because she tested for everything she could think of. I wonder how she is managing now that you need a note from your mother to get the insurer to let you test anything. 🙂