Juvenile Rheumatoid Arthritis

By CommunityMemberbdb596

1 min read

Hi everyone. I'm Kathy from NC.

Telling my RA story

I was born on March 6, 1969, and diagnosed in 1971 with JRA.

I have spent my life learning to live with this disease but as I get older it's getting harder.

My RA treatments

I have been on everything from Gold Shots to my Orencia. My body seems to build up immunity to drugs after a while.

I have been on Xeljianz for 6-7 years and even though my RA factors aren't high or changed much, the doctor feels like it's still working, but I'm the one living with it and I believe my body is starting to reject it.

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How RA has impacted my body

More about me.

I have had 6 elbow nodules removed, 5 finger joints replaced with plastic ones now 2 that have been fused with metal, the metatarsal joint in both feet removed and toes fused straight due to being overweight and excessive use of prednisone.

I got a gastric bypass which caused a 3-year remission.

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Richard Faust Community Admin
Hi Kathy (<inline-mention username="CommunityMemberbdb596" user-id="8500643"/>). I want to let you know that you are not alone here in being diagnosed with JRA at a very young age. My wife, Kelly Mack, was also diagnosed at two. Also, other contributors Kat and Daniel were diagnosed at two and nine respectively. Like you, I know they have been through their share of treatments that didn't do much and have the damage to show for it. I can tell you Kelly also had the gold shots and lots of baby aspirin. She had both hips and knees replaced at 15 and 16 respectively, has used a wheelchair since her teens, and other surgeries including a shoulder replacement this past fall. I say all of this to let you know that there are people here who understand and that this community is here for you. Wishing you the best. Richard (RheumatoidArthritis.net Team)
1. Lynn Marie Witt, MSOT Moderator & Contributor
 <inline-mention username="CommunityMemberbdb596" user-id="8500643"/> really appreciate you reaching out and sharing about your journey with RA. As my team mate mentioned we do have our health care advocates Kelly, Kat, and Daniel who were also diagnosed at a very young age. I have attached links to their article pages. They may have some articles that might be of interest of you. Kelly's article link:https://rheumatoidarthritis.net/author/kelly Kat's article link: https://rheumatoidarthritis.net/community/experts/kat-elton Daniel's article link: https://rheumatoidarthritis.net/community/experts/daniel-p-malito Thank you for choosing our community, to share your journey. It's a privilege to walk alongside you. You have found a great community of people, who "get it"! Please continue to reach out any time. Just Keep Swimming...Lynn Marie, "RheumatoidArthritis.net Team Member
kalessa Member
Kathy, I was diagnosed with JRA at age 2 in 1982. I am 41 now. At 18 I started breaking bones spontaneously..a lot of them. Turns out the JRA had spentbthe previous 16 years insidiously destroying my bones and I was diagnosed with severe osteoporosis. I have spent 39 years learning to manage the predictable unpredictability of this illness and all the physical, mental, and emotional stress thay comes with it. So, as you might expect, I can relate. Thank you for sharing. 💛🦋💛 kristina
Katkamm1 Member
Thanks everyone for the post. It does feel good to have others tell me their stories. I can honestly say if it were for the lord touching me when I was younger, I do not know how I could withstand a lot of what I go through. I had recently been on xeljianz for my RA but have been on it for several years and I feel like some of flare-ups which I call the crippling ones (stiffens up my joint) have been returning so therefore I believe that my current medication is not working as well so they have taken me off it and this past week without it has showed me it was working better than just anti inflammatory do. They are putting me on Rinvog which reading online which I shouldn't do but can't seem to help myself is kind of scary. Has anyone had any experience with this drug? I start it next week Aug 7th so wish me luck. Thanks everyone and hope to chat again soon.
Richard Faust Community Admin
Hi <inline-mention username="Katkamm1" user-id="8604288"/>. Like all of these RA drugs, the reaction of each person is different. I've seen people who have had great success with Rinvoq and others who had bad side effects or it just didn't help with symptoms. I know that doesn't help much, but I can add that it is JAK inhibitor, like Xeljanz, so if the Xeljanz helped that may bode well for the Rinvoq. I also want to add that there has been research finding that interleuken-6 is often a primary driver in juvenile cases (see here for example: <a href='https://www.tandfonline.com/doi/full/10.1080/14397595.2019.1574697' target='_blank' rel='noopener noreferrer ugc'>https://www.tandfonline.com/doi/full/10.1080/14397595.2019.1574697</a>). My wife, Kelly, started on IL-6 inhibitor about 5 years ago and it was the first drug to bring her inflammation numbers into the normal range in almost 45 years of JRA. Just mentioning this in case at some point you need to try something new and want to discuss this with your doctor. Best, Richard (RheumatoidArthritis.net Team)