Juvenile Rheumatoid Arthritis transforming in adult into RA or Lupus?

[mollyadelaide]

Just curious if anyone had juvenile rheumatoid arthritis as a child? What does it look like for you now as an adult? I was diagnosed with rheumatoid arthritis at 17 years old. I am now 33 and my rheumy does not believe it to be RA for sure now since after all these years I lack the deforming joint damage. He said they believe that jra sometimes transforms itself into ra in adults and sometimes can transform itself into lupus. Has anyone else ever heard of this? I never had.

[cardinalsfan789]

I was just looking around for an answer to this question.  I had jra when I was little. Actually my first memory is of a physical thereapist coming over to my house and putting weights on my ankles and doing exercises. My mom says that I was given many different medications (including experimental drugs) and by the time I was 12 the doctor wanted to do a knee replacement. However, my mom did not want that to happen and a few years later they said my RA was in 'remission' and I should just be careful not to destroy my joints if I could help it. Being a typical teenager I did not listen. I played volleyball, basketball, soccer, and softball all throughout highschool and now I am 31 and I have to wrap my kee every night.  Stairs are impossible for me and the crunching is so bad my kids say it sounds like rice krispies :) This sounds completely stupid but I am scared to death to go to the doctor because I know what he is going to say. The last blood test that I had for RA was probably 13 years ago and it came back just fine. My mom said that I just 'grew out of it"??? I didn't know that was possible. So, as I sit here and write this my knee is wrapped with an icy hot patch underneath and it is still hurting like crazy. Like I said, I know I need to go to the doctor but I'm a little freaked out to say the least. I am hoping that maybe it is something else ????

[mollyadelaide]

Oh, I agree! I was diagnosed but then undiagnosed. So to everyone else it must then just be in my head right? I mean what the heck is "undiagnosed autoimmune disease" anyways?! I won't even get started on my feelings on the mismanagement of patient's health. It would be entirely too long;)

That is great that your mom fought for your health! That's exactly what I'm trying to do for my son as well. The signs are just too clear and you do just have to go with your gut. His ped rheumy is so great. She's a good balance of cautious without dismissing anything.

Interesting the things they say about this and that changing and such. I would love to understand what is really happening in the body someday. I know my first pregnancy was the most amazing cure for my RA or my undiagnosed disease (as I fondly call it). Not so much for the second so maybe I'll have better fortune the third time around again:)

Thank you!

[carolanivey]

Thanks! :)

Yeah, you really can't ignore this or try to manage it on your own. Over the counter meds may make you feel better but the disease process is always going on in the background.

It also amazes me how long people go undiagnosed in this day and age. Obviously something is seriously lacking in medical curriculums. (Curriculi? lol) I was lucky because back in 1964, when I was dx'ed, my mother knew exact what it was because her mother and brother had it. She wouldn't rest until she found a doctor who believed her. Even though there wasn't much they could do except give me massive doses of aspirin until other meds were finally developed!

Congrats on your coming baby!! I remember some doctor telling me that pregnancy could make "RA turn into Lupus" but my OB just laughed at this. :) All I can say is go with your gut and always do your own research, get second and third opinions, etc. You know your own body the best so if something isn't ringing true for you, trust your instinct. Never take anything a doctor says at face value, even the ones you like. :)

[mollyadelaide]

Thank you for your thoughtful and thorough answer. Your insight and experience are incredibly enlightening and encouraging to me!

I think mine actually started when I was around 13. I had swollen and extremely painful knees for a few months, but the doctor said growing pains. That is also the age my raynauds began....Hindsight is much more clear:)

I think in the past I've staked way too much reliance on only whatever the current doctor told me. Very confusing to say the least. The rheumatologist who told me the joint damage was not significant had x-rayed my hands. My hands are always stiff in the morning and do have some crookedness to them, but certainly not my most painful joints whatsoever! I'm pregnant now with my third, but after I'm done breastfeeding this baby, I will probably seek getting answers to the extent, if any, of damage to my other joints. I think I have been quite fortunate to not have experienced too much debilitating pain. My theory has been mostly to try to ignore it, but after my second child's birth I realized that is certainly not working anymore! It affects my life daily and I figure I'd better get a better grip and perspective on how to handle it since my 5 year old son also seems to be following a similar pattern of jra:( Amazing the motivation our children can give us!

I wish you the best and hope your RA stays at bay! (Unintended rhyme!) :)

[carolanivey]

I was diagnosed at age 5 and am now 51. The disease symptoms have evolved over the years, plus treatments have improved. Once you have RA, you have it for life - I for one don't understand the medical profession's insistence that juvenile and adult RA are two distinct diseases. [[shrug]]

I also don't have significant joint deformity in many joints. My feet were the worst but those have  been surgically fixed. My fingers are a little bent but are fully functional and don't exhibit the horrible disfigurement you often see in pictures.

As a child my knees were constantly swollen and inflamed but recent xrays show surprisingly little damage for my age. As I got older, I went into a period of flare/remission/flare etc. with particularly vicious flares after my children were born. Once I started taking methotrexate, it decreased the severity of my flares but didn't stop them altogether. A few years ago i added Enbrel to the mtx, and I'm  as close to full remission as I've ever been.. :)

No two people who have RA (child or adult) experience the same set of symptoms, severity, or progression. It can be acute and aggressive, or more chronic and low-grade. It can be a minor inconvenience for some, literally deadly for others. It sounds like you have been lucky! However, please keep seeing a rheumatologist to be monitored.

While autoimmune disorders to tend to occur together (also called "comorbidity") RA does NOT turn in lupus. You may have one, the other, or both, but they are not quite the same disease process. Hope this helps!