So, who all has JRA?
Age, sex, age DXed, and maybe if possible an autobiography of your life with JRA, for comparison reason.
Me!
23 - Female - around 18months old
I'll do the auto-biography later.....I'm workin here....LOL
Hi,
37 for a few more weeks. Female. Diagnosed at age 3. I have RA in all joints except eyes. So many medications I can't even remember half of them. I led a fairly active and normal life until age 9 when drs determined that the RA had destroyed all the cartiledge in both my knees and most of it in my hips. At 11 almost 1, I was admitted to Children's hospital in Boston to stretch me out before they performed a total hip and knee replacement on both legs. I stayed in the hospital until age 13. From then until this last year I had been in remission. Very lucky! In 2005, gave birth to my daughter, Isabel. She was a complete shock because I had been told at 13 that the replacement surgery would make it impossible for me to have children. Guess the docs don't know everything, huh? I thank God for her miracle birth. Also discovered during pregnancy that I have a very large fibroid in my uterus. That causes its own problems. Because of that, there was some concern that Isabel wouldn't make it through the pregnancy. When it was found at 8 weeks, the fibroid was bigger than her and OBGYN thought it might stop her from growing properly. Not the case. She was born at 8lbs 4oz and 21 inches long. My miracle just bullied that fibroid right out of HER way. In 2006, I started having problems and severe pain in my left shoulder. After x-rays, RD found that the same problem was occurring in my shoulder as had happened in my knees, hips many years ago. Shoulder replacement was considered however replacement is more for the pain, says the orthopedic surgeon and my main issue is a loss in movement. The pain is kept under control by the medications that I was taking at that time. However, due to my shoulders being affected, I was unable to continue working as a customer service rep for HSN in FL. I couldn't type for more than 3 hrs straight and they wanted 8 hrs worth of work out of me. I had to go on SSDI. Aside from Plaquenil, I really don't remember that many of the medications I was taking as a child. More recently, I was on Plaquenil and Naproxen however doctor was talking about taking me off Naproxen and putting me on something else. Unfortunately, I moved suddenly to MA in 2006. My mom passed away unexpectedly from undiagnosed heart disease. It took a while for me to get on the medical care so I've gone without my medication for about 1 yr. Boy can I feel it! Fortunately, most days I can treat it with ibuprofen or Aleve. I've been very lucky in the RA area.
Sorry so long winded. Glad to meet you all.
I'm not a JRA'er - but justed wanted to say hi and welcome Steph.Jeanne,
Thank you. Nice to meet all of you. This board has been a wonderful source of information for me.
Hi jooine
I was diagnosed with jra at 9 years old I told them its not growing pains went in remission at 11 full Rheumatoid at 21 and counting no joints replaced yet.Used every drug ever made for arthritis all failed untill now wait for the drum roll Mabthera\rituximab blast my B cells away this works for me so far time will tell
regards gigabyte - land down under
Ra Mabthera\rituximab
Hello and welcome gigabyte,
Glad to hear after all else has failed that you found medicine that works. I will pray that it continues to do the job for you.
19 diagnosed at 8
Hello littlemermaid,
My niece is going through the same thing now. She has been trying to be diagnosed with RA for a few years but the drs aren't ready to give in and say that's what it is. My brother and I both pretty sure that's what she has. Her movements and walking are just like mine. Hang in there. I know it feels discouraging when nothing is working. I pray that your dr finds something soon to help you.
Hi Joonie,
I'm 50, female, dx'd at 7. (Had rheumatic fever and some paralysis at the age of 4.) Spent extended times in hospitals for the first two years. Then on sulfa, pred, and aspirin. Pretty much went into remission during teen years, except for when my parents died (Mom when I was 13, Dad when I was 16.) At 21 everything just started back up, but slowly. Each year meds increased and changed. Pretty much did all Rx that have been mentioned here, except for the Enbrel, Remicade types. Was in an ifusion study at Rush University for a year, which made a positive difference. Ins. after that wouldn't cover infusions, and it's too expensive with present ins. Been on SSD since 1992. Still on MX since 1989 along with 12 other meds. (At least it's down from 16 other meds!)
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