Dear all, I am from Russia, Moscow, and wanted to get your insights on the deasease. I have a 2 and half years daughter and 3 weeks ago we noticed that her one ankle is swallen and she is difficult to step on her leg 9sorry for my english) . We whoed her to the best doctors here, and all of them say that it looks like she has JRA and want her to start on Enbrel. But I am really worried about the diagnosis. The blood results are not bad, Reumo factor is negative, CT showed the liquid in the knew but for me difficult to translate everything else. But I waana say that there is no marker whic hwould show that it JRA. No infections identified. What to do? There are no fever, no other symptoms at all, but the swallen one knee and difficult to step on in the morning (evening is much better). Will be looking forward for your stories,
I have had JRA since age 5 and am now 51. I was lucky because my mother knew what was wrong with me right away. My grandmother and two uncles had RA.
Are you able to take your daughter to another rheumatologist for a second opinion? This could help ease your mind.
It is not unusual to have no markers present in blood tests yet still have symptoms. This is called "sero-negative" RA. A good doctor is aware of this and will treat the patient based on a broad range of evidence, not just blood test results.
The important thing is that your daughter be treated early and aggressively in order to prevent permanent joint damage. When I was diagnosed back in 1965 we didn't have all the advanced medications we have now...all they could do was give me massive doses of aspirin. There are a wide variety of medications available now, Enbrel is only one of them.
I suspect the doctor will start her on Enbrel and see how much that helps her. If it helps a little but not enough, he may add another medication such as methotrexate. I have taken methotrexate for over 20 years. A few years ago we added Enbrel and it has been a good combination for me.
The good news is, children are extremely adaptable. At her age, she may not have the language skills to tell you how good or bad she is feeling, so it is up to you to watch her for non-verbal cues. Also, you can teach her ways to communicate how bad something hurts. A series of simple face drawings that start with a smile and gradually progress to a frown could help. You can point to her knee and ask her to tell you which face expresses best how it feels.
I hope this helps. I know how worried you are, but both you and she are going to be all right.
I've had JIA (Juvenile Idiopathic Arthritis) for a while now. When I first got it I played baseball and every night I would come home from practice and my knees were inflamed and red. my knees were the size of cantelopes. i had to go to 3 of the US's top doctors before they finally diagnosed me and calmed the arthritis down. One of the first things I noticed to my diagnosis was my ankle was painful and hard to walk on, but there was no redness or inflammation. I changed my shoes and that didn't help. Eventually it just went away.
I would be interested about the evolution of your daughter. Our case is quite similar: my daughter (2.5 years old) has JRA since last October; her left knee is swollen since then, she has been limping and had stiffness in the morning, but for about 2 months this symptoms are over; the blood tests are ok (ANA, RF, CRP, Fibrinogen, ASLO) except for ESR which was high at the beginning and now is just a little bit over the limit. She is on NSAID (Proxen-Saft) and some homeopathic remedies and the rheumatologist press for corticosteroid intra-articular infiltration: Triamcinolon Hexacetonid (Lederlon) ... I don't know what to do ... except for the swollen knee the child is fine now: no pain, no limping, just a bit of stiffness if she is flexing the leg totally ... I'm really afraid not to ruin this with the cortisone ...
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