1. < Autoimmune Diseases

Rheumatoid Arthritis (RA) - Introduce yourself and meet others

Posted by Kanaaz Pereira, Connect Moderator @kanaazpereira, Mar 30, 2017

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.

pippie | @pippie | Jul 17 6:54am
In reply to @kimdett "Hi everyone! I am 54 and was just diagnosed with palindromic rheumatism also called seronegative rheumatoid..." + (show)
@kimdett

Hi everyone! I am 54 and was just diagnosed with palindromic rheumatism also called seronegative rheumatoid arthritis. I have had 3 flare ups and these include painful and swollen hands and wrists and feet. Also have pleurisy. Started taking plaquenil at the beginning of November. Hasn’t helped yet. Also prescribed prednisone to help with flare ups. The difference between RA and what I have is I go back to completely normal between flare ups. But it can turn into RA eventually. Anyone else out there have palindromic rheumatism?

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Hi, I realize this is an old post but I just joined the panel. Back in 2013 I was diagnosed with palindromic. I changed my entire life by keeping a food and flare diary. I cut out all sugar, gluten. processed food, and nightshade vegetables. Started a strength training routine. My first rheumatologist wanted to put me on heavy duty meds right off the bat and I said no. Thankfully I went to mayo and have connected with a great doc that actually listens to my concerns. Yes, I was /am on prescription drug to help control (sulfasalazine). This past year (2023) my symptoms have changed and I am back on the research trail 🙂 Let me know if you have found any alternative relief/non pharmaceutical please! Thanks

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zenalucy | @zenalucy | Jul 17 9:00am
In reply to @pb50 "What an ordeal!! I was diagnosed in 2012 and after Humira and then Enbrel and finally..." + (show)
@pb50

What an ordeal!! I was diagnosed in 2012 and after Humira and then Enbrel and finally Remicade, I am very well controlled with only occasional flares. I do have repetitive issues with tethered tendons in both hands and migratory joint pain. But compared to many, I am very well controlled by Remicade.
My doc and I recently discussed trying a less dangerous drug. But I am familiar with what you describe - that if you stop an RA drug and then resume, it is very likely not to work as well. So I am making no changes.
I am not familiar personally with Simponi, but an acquaintance tried it and had to stop because it jacked up her blood pressure.

Hang in there and good luck!!!

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I tried Simponi , I'm in a 6 month flare and is simply did not work. I had no side effects

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ksnak | @ksnak | Jul 17 9:36am

Thank you. I just started with my first dose today. I will know in a week or so if it works for me.

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reelgal | @reelgal | Aug 14 9:02am

I’d like to join this discussion. I bookmarked it. Any other way to follow it?

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1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Aug 14 6:38pm
In reply to @reelgal "I’d like to join this discussion. I bookmarked it. Any other way to follow it?" + (show)
@reelgal

I’d like to join this discussion. I bookmarked it. Any other way to follow it?

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@reelgal Welcome to Mayo Clinic Connect! You’ve joined the group just by commenting in the group! I just need to remind everyone to use the @ sign before the name of the person you are answering , just like I did at the beginning of my comment. This ensures that the person you are making a comment to gets a direct email of the comment
Is there anything specific that the group can help you with?

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1 reply
reelgal | @reelgal | Aug 15 9:03am
In reply to @becsbuddy "@reelgal Welcome to Mayo Clinic Connect! You’ve joined the group just by commenting in the group!..." + (show)
@becsbuddy

@reelgal Welcome to Mayo Clinic Connect! You’ve joined the group just by commenting in the group! I just need to remind everyone to use the @ sign before the name of the person you are answering , just like I did at the beginning of my comment. This ensures that the person you are making a comment to gets a direct email of the comment
Is there anything specific that the group can help you with?

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@becsbuddy

Thanks for the welcome. I’m just looking forward to following this thread to meet others coping with RA and staying abreast of new treatments.

I’ve had RA since college and am 65 years old. I also have been diagnosed with Sjogren’s. Currently taking Simponi Aria and methotrexate.

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melinda561 | @melinda561 | Aug 16 7:48am

Has anyone tried hyperbaric oxygen treatment and if so did it help with RA? Thank you.

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3 replies
Mentor
John, Volunteer Mentor | @johnbishop | Aug 16 8:28am
In reply to @melinda561 "Has anyone tried hyperbaric oxygen treatment and if so did it help with RA? Thank you." + (show)
@melinda561

Has anyone tried hyperbaric oxygen treatment and if so did it help with RA? Thank you.

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@melinda561, I did a search of Connect but couldn't find a member sharing hyperbaric oxygen treatment (HBOT) therapy for RA. There are quite a few members who have shared experience for other conditions - https://connect.mayoclinic.org/search/comments/?search=HBOT%20therapy%20%20

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1 reply
annelia | @annelia | Aug 16 9:02am

Hello ... I was wondering if anyone is on Orencia infusions ... once a month schedule . I wasn't sure where to put this question, sorry.

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1 reply
melinda561 | @melinda561 | Aug 16 6:03pm
In reply to @johnbishop "@melinda561, I did a search of Connect but couldn't find a member sharing hyperbaric oxygen treatment..." + (show)
@johnbishop

@melinda561, I did a search of Connect but couldn't find a member sharing hyperbaric oxygen treatment (HBOT) therapy for RA. There are quite a few members who have shared experience for other conditions - https://connect.mayoclinic.org/search/comments/?search=HBOT%20therapy%20%20

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Thank you for your time. I’ll see if I can find more information.

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