Rheumatoid Arthritis (RA) - Introduce yourself and meet others

Let's talk about living with rheumatoid arthritis.
As moderator of the Autoimmune Diseases group, I noticed that several people were talking about RA, but those conversations were scattered throughout the community. I thought I would start this discussion to bring us all together in one place.

Let’s grab a cup of tea, or beverage of choice, and let's chat. Why not start by introducing yourself?

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Would like to hear comments regarding RA and MTX shots and Simponi infusions. After 4 months on MTX my hair is thinning 300+ daily. Any comments??

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Interested in hearing any replies to this as well. Have been taking low dose methotrexate and stopped for 2 weeks at the 22 week mark-feeling like a walking chemical experiment- however two weeks later all the joints started screaming and swelling again. Ugh.

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@petersgpcp23

Would like to hear comments regarding RA and MTX shots and Simponi infusions. After 4 months on MTX my hair is thinning 300+ daily. Any comments??

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Welcome @petersgpcp23, There is another discussion that you might find helpful here where members have discussion methotrexate and Simponi infusions.
--- Can methotrexate and/or hydroxychloroquine make RA worse?
https://connect.mayoclinic.org/discussion/can-methotrexate-andor-hydroxychloroquine-make-ra-worse/.

@glynnissorrentino9 mentioned Simponi infusions in a post here - https://connect.mayoclinic.org/comment/695665/.

Here is an article that speaks to thoughts on hair thinning/loss:
-- Rheumatoid arthritis and hair loss: What is the link?:
https://www.medicalnewstoday.com/articles/325569

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@kmacky

Interested in hearing any replies to this as well. Have been taking low dose methotrexate and stopped for 2 weeks at the 22 week mark-feeling like a walking chemical experiment- however two weeks later all the joints started screaming and swelling again. Ugh.

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Welcome @kmacky, I'm not sure if you saw my response to @petersgpcp23 so I thought I would provide a link to the reply - https://connect.mayoclinic.org/comment/806885/.

Did your doctor stop the treatment to try something else?

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@johnbishop

Welcome @kmacky, I'm not sure if you saw my response to @petersgpcp23 so I thought I would provide a link to the reply - https://connect.mayoclinic.org/comment/806885/.

Did your doctor stop the treatment to try something else?

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Thanks for the link, John. So much info in everyone’s responses.👍
My doc did not stop the methotrexate. I did. The brain fog was overwhelming. But the first 12 days were wonderful! I had energy, ambition, no pain.
Then about day 16 , I was really hurting again so I started back with 4 methotrexate tabs (2.5 mg ea) instead of 6 and it’s helping. Haven’t seen doc, just started back in my own- will see him again in 3 weeks. He is a geriatric/internal doc and my primary.
Thx for your input!

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I was diagnosed with rheumatoid arthritis when I was 5 years old. I turned my ankle and it swelled like a sprain but then wouldn’t go down. A few months later my knee “flew” out when running and swelled and wouldn’t go down. After 9 months and lots of doctors we found ourselves in Memphis, TN, with a pediatric rheumatologist who diagnosed me. I was RF negative, but it was the only explanation left. He treated me for about 16 years. He was wonderful and kept the fluid out with aspirations and aspirin therapy and I had minimal damage. It didn’t go away as I grew up. Obviously, as I saw him until I was about 20 or 21. I still test negative for rheumatoid factor but had a rheumatic nodule removed from the bottom of my big toe when I was about 30. Sadly, I didn’t get a copy of the pathology report. It’s very difficult to get doctors to believe you when you cannot show documentation.

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5 yrs old is so young to have to be dealing with that or any other medical condition.
Wishing you the best of luck in finding a doctor who will be helpful. I am new to my diagnosis and now going to read all about RF- had not seen that acronym before.
Thanks for sharing.

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@suzcape

I was the diagnosis gift of RA in June 2022. Sudden onset that progressed over month or so previous. Rt Ankle, L knee, wrists, R knee built up to every joint. Rheumatologist came thru w/ Methylprednisolone 4mg Hydroxychloroquine 200mg. Hydrox aft 3 wks gave allergic reaction (not fun). Plans to change meds. So far no pain. Pred was increased short term - makes me energized, have clean house. No like steroids though. Thats my story do far. Never knew anyone who had RA.

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Update: I am now on 5th Orencia infusion (monthly). Has worked tremendously.
Had break thru pain , after missing Dec infusion due to being on antibiotics. Methylprednisone 4 mg, works for that and keeps pain at bay.
I do not care for steroids and use minimal as needed. So far so good.

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@johnbishop

Welcome @kmacky, I'm not sure if you saw my response to @petersgpcp23 so I thought I would provide a link to the reply - https://connect.mayoclinic.org/comment/806885/.

Did your doctor stop the treatment to try something else?

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Changed NYC med from .4 to .2 and prescribed Leucovorin Calcium tabs 25 mg (1) 12 hours after injection. Been on one month and no improvement.

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Change med - auto correct NOT correct!!!! Not NYC IT'S MTX!!!!

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