Rheumatoid Arthritis (RA) - Introduce yourself and meet others

Good morning. I am 67. I have Morphea and Rhuematoid arthritis. Symptoms started in 2022. At first was thought might be polymyalgia rhuematica. Just kept getting worse. After several ER visits, a cardiac catheterization, skin biopsies, MRI and X-rays, many medications, and much lab work, found a rhuematologist. He says not PMR, but it is RA.
Today I am feeling much better and can function reasonably well again. Inflammation markers way down.
I chose to do self administered methotrexate injections weekly to avoid the gastrointestinal side effects. I’m eight weeks in and no big problems. I continue to have some unsteadiness, fatigue, brain fog, some pain and stiffness hands, knees, elbows, and takes me a couple hours to get going in the mornings. My skin is so much better, and am not developing new Morphea lesions. Morphea was a nightmare of constant burning and itching skin all over my body. I’d pick RA symptoms over the Morphea, if given a choice. Luckily methotrexate treats both conditions.
For the methotrexate injections I use a short, thin needle on a tuberculin syringe. Just a tiny little sting when I inject the medication. I rotate sites on my abdomen and thighs. Am currently tapering off prednisone. Hydroxychloroquine (Plaquenil) did not help me. Gabapentin made me very dizzy and vision blurry. I took that for the nerve pain (felt like electrical zaps) from the Morphea.
Today it feels pretty wonderful to have actual diagnoses, effective treatments that I can tolerate, and to be able to enjoy life again. I accept that my old normal is gone, but so grateful to be here with my family! Hoping the prednisone taper down doesn’t mess this good space up!

Anyone with RA and RA-ILD? Actemra is working to keep the joint issues stable. The lungs, however, are a different story. Any ideas for dealing with lung issues and RA are welcome.

@ead. I’m really sorry that you’re dealing with ILD and RA. I found this discussion on RA-ILD and I think you might find some interest in it.
https://connect.mayoclinic.org/discussion/recently-diagnosed-with-rheumatoid-arthritis-in-the-lung/
I also found this information sheet from the Pulmonary Fibrosis Organization.
https://www.pulmonaryfibrosis.org/docs/default-source/programs/educational-materials/fact-sheets-english/pf-fact-sheet---ra-ild.pdf
Are you currently receiving care from a lung specialist (pulmonologist)?

When i said “ …Any decent honey will do, but you really need the real thing for peppermint tea. “…. I meant the peppermint tea needs to be made with real peppermint like i included. Manuka honey is expensive so its fine if you use any decent honey to sweeten the tea.

When i said “ …Any decent honey will do, but you really need the real thing for peppermint tea. “…. I meant the peppermint tea needs to be made with real peppermint like the option I included. Manuka honey is expensive so its fine if you use any decent honey to sweeten the tea. Just no artificial sweeteners.

I was on Methotrexate (MTX) along with Enbrel for several years and for the last 3
I was injecting trying to minimize liver impact. That ultimately failed and I was switched to Remicade and am very well
Controlled.

Stay well.

Good idea! I’ve had negative RA for 35 years and never met more tha 2 others with it! It’s been half my life and will now be my death. I have RA Cachaxia now and steroid induced muscle wasting -lost several glutes ( Dec.) and shoulder ones. ( 35 years of low dose prednisone). Mobility is hard now and not knowing. No one , including Mayo when I called, wants to hear about it or have tips. Now I have rapid weight loss and eating lots to stay at 97! (5’1”)
Any hints or stories? Chris from CT

Hi all, I have had seronegative RA diagnosis since 2012, altho many symptoms prior to diagnosis. Also have had hypothyroid problems since prior to 1972 and diagnosis of restless legs syndrome in 19–?? (I kicked like a mule!). Currently, at 79, my knees bother me a good deal. Enbrel helped me greatly, tho I no longer qualify for that Rx from the manufacturer. Am on Inflectra infusions q 8 weeks, and hoping for greater relief with that Rx.

My rheumatologist is terrific and very responsive to issues as they arise. I lucked out there! Marty

I see you got a few responses. I agree that a dedicated subgroup would be valuable; there are too many varied responses/inputs on the Mayo site, all with different diagnoses. We need a dedicated negative RA subgroup. What are you doing to try to get Nayo to organize this? Clearly you’d need their agreement/help to organize this for us. As it is now, it’s very time consuming to screen the dozens of daily mixed inquiries. Have you tried to get Mayo to organize this? Can I help you?

Still hoping to connect with others who are experiencing Chataxia ( muscle wasting ) and tips , medical help ideas ….
Mine is worse due to 35 years of daily prednisone - can’t get lower than 5 . Myopathy is a response to that - any and all muscles apparently? Also on Orencia IV bio, methotrexate, and now Tramadal for pain.