Rheumatoid Arthritis (RA) - Introduce yourself and meet others

I have been on Orencia almost 5 years. At one point I needed to go off for 5 months to accommodate a surgical procedure When I returned to taking it, it worked well again.

Hello, My name is Robin.
I have RA and Osteoporosis. I'm getting ready to start 3rd injectable. I've had side effects from Humira and Enbrel.
I love my Prednisone injections that I get when I have a flare. I'm like the Energizer bunny.

Energizer Bunny - agreed. Just wish Prednisone didn’t have the side effects long term. Def calms the flares when needed. I do 5 tabs, then ween off daily, does it’s job short term.

Hello my name is Judy I am 76 years old, and I have RA along with other autoimmune related things, along with a type of blood cancer.
I am moving from Kentucky back to senior apartments in Sheridan, Wyoming. Needless to say I am hurting and exhausted from packing and cleaning. Enjoy seeing all your posts.

What a great idea for this group.

I am Pam and I am recovering from surgery in late May to remove a rare lung cancer (mucinous Adenocarcinoma) that we have watched grow slowly for 4 years, assuming it was an RA module. I had the lower lobe of my left lung removed. Fortunately the tumor was stage 1 and modes & margins were clear.

I also have RA, diagnosed almost 12 years ago. I had an unusual onset - woke up one morning with numb left hand that resolved in about an hour. Woke up next morning with both hands numb, and it progressed within 3-5 days to not being able to open a bottle of water or turn a door knob. Other joints began screaming. I went through a version of the step up drug delivery that was time wasted until I finally got to an ace Rheumatologist in NYC who immediately told insurance companies to pound sand. Well she actually told them that moderately severe acute onset promised bad outcomes down the road, which would cost them more. So I was put on Humira and Methotrexate. In a couple of yrs I developed antibodies to Humira as we decreased Methotrexate to protect my liver. So I went on a Enbrel. That lasted a few years and suddenly quit working. In 2019 I moved to NC, found another ace Rheumatologist (after an initial disastrous one), and started Remicade. It’s been a miracle
Drug for me. I pray every day it continues to be effective. I am now RA factor positive, but interestingly I didn’t start that way.

As I’m sure all of you do, I manage pain and sequale daily. I’ve had 4 trigger finger surgical releases and one dupuytren’s release.

Right now I’m having pain due to left side rib cage and diaphragm restriction when I take deep breaths and am questioning whether RA could be contributing to that stiffness. I am having a diagnostic CT in a week to see if there is anything obvious that could be causing it. But I’m not optimistic. Bones and joints just tend to hurt with RA.

Geez. That was wildly longer than I intended. Apologies for the Tome.

@boat1347 oh, my goodness! I’m glad you’ve finally engaged with the RA group!Welcome! Maybe you can tell us a little more about how you are handling a move and RA? Will you be able to see your doctor before you actually get on the road? And can they recommend a good doctor for you in Sheridan?
Looking forward to your story!

Welcome @pb50 We’re glad to have you join with the other members. I’m wondering if the pain and stiffness on your left side could be RA + surgery.
Can you tell how you found 2 ace rheumatologists? That’s a difficult feat!

SERIOUSLY GREAT FORTUNE. when I was first diagnosed I lived in NYC working as Chief of Staff to a senior exec at the bank and that level of Officer had their own clinic so they could just run upstairs if they needed a doc. I couldn’t take notes in meetings or even open my own water bottles- so he asked the upstairs head of medicine and the next day I saw one of the best rheumatologists in the city. And a woman to boot. When I moved to NC she found a referral for me (after the one I found on my
Own told me I had OA, not RA. Until that point I had never tested positive for RA factor,
But when that jerk tested me to prove I didn’t have it, damned if I didn’t. That was my mother in heaven saying “I’ve got this”. 🙂
But yes, freakish good luck.

I am going to wait for the CT to see if it notes adhesions or significant inflammation but it’s not out of the question to me that it’s an inflammatory reaction.

Loved reading your story, Pam (@pb50 ). Have to agree that finding a specialist able to understand you and what you need is a very fraught journey. And in this instance I do mean 'journey' - sometimes it feels like you've been to Mongolia and back. I can relate - also being RA factor -ve, and having had one rheumatologist tell me 'nothing wrong with you, although you have OA in your big toe'. (!) Finding a great rheumatologist really is the key to both the right treatment and feeling good about yourself. I feel as though I can cope with anything RA and Fibro throw at me if there are empathetic people around who don't make you feel like a fraud. Good luck with the CT - hope it's something identifiable and treatable. FWIW, my Fibromyalgia manifests sometimes as pain and tightness around my ribcage that feels like it's restricting breathing so there really are a whole truckload of 'maybe's. Fingers crossed for you. x

Aw thanks. I appreciate your support. ❤️

Really interesting that your fibro gives you rib/diaphram tightness. Another data point!