Connect
Comment receiving replies
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
Replies to "Your history amazes me. Mine is a bit more linear. I believe I told you that..."
Connect
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.
https://www.mayoclinic.org/diseases-conditions/rheumatoid-arthritis/symptoms-causes/syc-20353648
"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.
https://www.ncbi.nlm.nih.gov/books/NBK551523/
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.