Rheumatoid Arthritis (RA) - Introduce yourself and meet others

Hi Julie @juj, Welcome to Connect. I don't have RA (yet) but do have arthritis and polymyalgia rheumatica (PMR) which is currently in remission. Hoping your rheumatologist helps you find the right regimen soon to get some relief from the pain. While we wait for other members to respond with suggestions or information, I thought I would share this site which has a list of all of the treatments used for RA, including Rituximab, from the American College of Rheumatology.

--- Treatments: https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Treatments.

Have the infusions helped some?

Hi Julie,
At the time I started developing peripheral neuropathy (hands, fingers, feet and toes), I immediately brought it to my rheumatologist's attention. I was on Remicade infusions at the time and there had been, unbeknownst to me, a "Black Box" warning issued on the drug indicating that neuropathies could develop. I was immediately taken off of Remicade from which I had been getting good deal of pain relief. So I was weary about a bad flare up, but I believe I was moved over to Rituxan which provided, fortunately, some relief, albeit not as much as Remicade had. Unfortunately, despite suspending Remicade, my neuropathy persists. Without my daily Lyrica dose (450 mg), the pain is intense to the point I am unable to think clearly and function. Sjogrens, which I have, can also lead to neuropathy, so my docs are quick to point this out and that Remicade may not be the smoking gun. However, I am still convinced that Remicade was in fact the cause, since I have had Sjogrens for decades without developing neuropathy. I am now under the care of a neurologist for neuropathy, and I encourage you to see one. Some medications can cause neuropathies, so please research and discuss with doctors before adding new meds to your regiment. Glad to hear, Julie, your PMR is in remission!
Wishing you the Best
Bill

Thanks for the info…no relief from the Rituximab but the DR said to have the infusion in August since it may take a few months after that to see the effects.

I have been living with the trifecta, (RA/OA/PSA ) for half my life. I am interested in therapies that control pain, as I am the caregiver for both my nonagenarian parents, one with heart disease and one with stage 4 cancer, one in my home and one in her own. Currently on Humira, Plaquenil, and with severe flairs, Norco. I have to be able to function.

I have RI as well, diagnosed in August 2022, and using methotrexate and prednisone. The RI symptoms are at bay right now, but I stopped the methotrexate at week 22 for 3 weeks because if intense brain fog. All the ache and pain came back into joints, arms, hands after just 2 weeks - so I started back up again. Dont know what my doc will recommend when I see him again.

Hello,

I’m Sarah. My mother was diagnosed with RA from around age 60. Her final years were full of complications from the disease attacking her internal organs and then multiple demyelinating neuropathy. I suspected RA for myself around the end of her life and asked her Rheumy for a work up after a super high ANA ordered by my PC. I was told no sign of it and must be osteoarthritis. About a year later I had a major neurosurgery that discovered dural ectasia. Afterwards, for no particular reason (i was not stressing my joints, i was just very slowly recovering from surgery) I was struggling with tendinitis in multiple joints. I started to worry about connective tissue diseases like EDS but my hands were also aching like RA. I decided to search out a Rheumy other than my mom’s in order to get a fresh start. I had a work up and all the blood work was negative for RA but she decided to order a hand ultrasound to rule it out for sure. That took 6 months to schedule - ugh - but, 2-years after I first suspected RA, the tests finally agreed. The Ultrasound showed RA which had advanced to joint damage in multiple places. I felt vindicated after all this time but also scared given my mom’s experience.

I started on Methotrexate lowish dose, increasing every 3-months to 25 mg now for last 6-mo. I’ve also been using 5-mg prednisone most days but i try not to take it because i have osteoporosis. I’m still in a lot of pain but my doctor likes to give each dose at least 6-mo to take full effect so it’s been slow going and super frustrating. It’s been a full year of methotrexate now. I’ll see her next month to discuss biologics and though I’m nervous about that step I’m hoping for better relief. It’s been good to read your stories and to see the support available here

Thanks for listening.

@kmacky this is all too familiar to me and thanks for your story. I struggle with effects of RA. It seems to be the gift that keeps on giving

I'm a 71 YO male diagnosed with PMR and RA. I also have a slow developing prostate cancer that my Urologist is just monitoring. Currently tapering 4mg Prednisone and couldn't tolerate Arava or Hydrochloroquin. Just starting taking Sulfasalzine but it isn't controlling swelling and pain in my hands and feet.
My Rheumatologist said the next option is biologics, but suggested I get clearance from my Urologist. It's amazing to me how all of these diseases and treatments are so complex and connected.
I'm very thankful for Mayo Clinic and these discussion groups.

@cody0623 I’m so glad to hear that Mayo Clinic Connect has been so useful for you! When will you see the urologist and maybe start on biologics?

Sandra from Glens Falls, New York. Age t72, diagnosed at 55. Also Sjogren’s. Orencia has given up the fight. Only Biologic left that I didn’t fail is Remicade. Worried about side effects. Good luck to you all, nice to be here.