Hello, I am new

Hi.  I am recently diagnosed with Systemic Juvenile Rheumatoid Arthritis.  I am 31 years old.  The doc tells me it is extrememly rare to be diagnosed at this age and he has only had 2 cases in his career.  I also tested IGG positive for parvo and EBV.  Somehow I feel there is a relation.  I suffered from severe joint pain, fevers, and rashes for at least ten years for the docs to tell me it was growing pains to a mental problem.  This doc that I saw at the university was amazed at my last rheumies response to pain and high CRP etc.  He literally told me I am overweight, lose weight and it will all go away.  Then when I tried to make a follow up appointment the receptionist said she would call me back and when she did she called with a few names to shrinks.  Do you believe that crap?  Anyway this doc actually an infectious disease specialist said that with JRA your ANA's and RA factors are sero-negative.  He put me on indomethacin 50mg three times a day and let me tell you within 4 days I saw major improvements.  Joints were bending that didn't in a long time.  I still continue with muscle aches and fatigue, but I can tell that things are getting better.  He said that this won't go away, but had someone figured it out years earlier I might have had a better chance of remissions.  Possibly even complete.  darn.  I wish docs didnt think that every woman was loony.  Come on.  Anyway, I was wondering about treatment options which he says are similar to those for RA, and if there is anyone else here with JRT, I am guessing ye will be of the younger crowd.  If anything I am just here for a bit of support. Also, the doc gave me a couple names to rheumies but I am so leary of them now.  How do I choose? If this is so rare are the docs going to be less will to treat me?  I want to feel 30 not 85. 

Thanks

bloo

Thank you for replying I hope to learn alot about all of you throughout our journies. It is amazing how these diseases go. One day you can be great and the next completely useless with pain and fatigue and for some of us, fevers. I hope ultimately the doc finds a med that has less side effects than nsaids in the long term or even something that attacks the cause. I would love to have the me back that I havent had in many many years.

Gotta sign off some nasty stormies coming in.

will be around later.

bloo

I am not sure honestly. I think it is because of the rashes and fevers. I get extremely high fevers. Maybe it was because he dated it back to when I was sixteen. See all of this started when I was really young. My parents would take me to docs and they would just tell them it was growing pains. Then at around 12 or so it was gone. Only to return later. This is when the neuro called it psychosomatic.... thinks I was abused even when I told her I wasnt. Then this new doctor seeing the fevers and rashes as well as bilaterally affected joints says no I think it is this. After the meds helped so much he said that it is Systemic JRA. Systemic because I have a enlarged spleen, swollen lymph nodes, rash
and fevers. Not sure if this helps.

bloo

oh: thank you for responding I love to hear from other people.

 oh my Lord!  what an absolutely incredible diagnosis! by all means i am not happy that you have to suffer with this...but i LOVE how they dated this RA back to when you were younger. STILL's DISEASE!  wowhee!!  Ducky yeah, you were right. no I'm not a sicko babybloo...   i just get excited about interesting and hard to crack cases.

i was a bit similar as well. started when i was about 14/15 years old: fevers, back, wrist and knee pain, rashes, headaches, jaw pain.  "growing pains" blah blah blah...at 19 years old started developing seizures, couldn't walk, extreme joint pain bilaterally, etc...(you know how it goes)

turns out i had Lymes Disease (DX by extensive tissue & DNA bacteria testings) from age 14 .(long time with no treatment) and at age 16 i had also started testing positive for RA..but docs decided to ignore it (they said i was probably going to get it when i got old! hah!)

but the Lymes had triggered an autoimmune disease since it had been left untreated for over a decade. it was 2003 when i FINALLY got that answer.

but wow...what an interesting case. i am sure you baffled many docs! (they do not like a challenge) and yes...i was put on SSRI's by docs as well  ; but...do not get insulted. doctors have a responsibilty to treat and diagnose depression and they do not want to overlook it &they HAVE TO rule it out. but yeah, it does make ya feel crazy.  but that's when you have to go into the office with your " I AM NOT DEPRESSED OR LOONEY DIPLOMA" and then they'll drop it. LOL.

whether it be JRA or adult RA...docs are treating them the same now. i believe that Enbrel and Remicade are currently used for JRA and  adults as well.

i can say though, the longer RA has gone untreated...it might be harder to achieve remission.  but you have shown a marked improvement with the Indocin already which is a very good sign.  but it still is worth talking about DMARDs and TNF injectables if you want to get more aggressive or if you feel you make a halt in progress.

i had been on Enbrel for 2 years, now i take Humira (started that in August) every week with Imuran daily and prednisone when needed...but i haven't had any remission in the past 4 years. so i'll be looking at adding methotrexate to the combo soon (friday).

keep a close eye on your joints and range of motion and fatigue. personally, the Enbrel and Humira helped tremendously with the RA related fatigue.

also, perhaps if at all possible...seek a rheummy that has dealt with both JRA and adult RA.  at your state's University Hospitals some of the nations best rheummy's practice. you might find that consulting with 2 or 3 rheummy's to be beneficial, you jsut may come across an innovative thinker.  feeling comfortable and good communication with the rheummy is probably the best choice in choosing a doc.  the most popular docs are good for nothing if you can't attain a good Dr./patient relationship. so maybe what it will come down to is: who do you feel most comfortable with & who actually "listens" to you and cares about your case.

rheumatics is a tricky art...probably one of the most intricate areas of medicine. (that's why i like it) ((although i wish i didn't have it!))

good to have you, write back & let us know how you're doing.

sincerely,

erin 

Who loves ya' baby? :) hee hee hee

Nice to meet you Erin. Yeah so I hear about the rarity of this, thatis what worries me. Well, the doc at the university who diagnosed this gave me names of rheumies also at the university. I have been hesitant to call though. What if they dont take the doc seriously? Or me? What if they negate his dx and pull my meds? A lot of what ifs but I have been through hell trying to find out what is wrong and just finding relief now I worry about losing that. Nice to know shomeone else has been through a similar experience too.... though I do not have lyme disease. The infectious disease doc tested me for everything under the sun. Does anyone know if JRA is autoimmune or a result of a virus or something? Is there a classification this falls under? Does it really matter? Does having this mean I do have a weaker immune system too is that why I am always sick and fatigued so easily? Actually, this was the very first day I could work 10 hours without complete exhaustion... I want to get off of the neurontin but each time I decrease the dose I start hurtin so bad and the fatigue returns and even the fever starts coming back. So I may not for now, but it sure would help so that I can lose weight faster. I am actually considering getting a treadmill now that I can walk again. Build up to running. I actually jogged up a flight of stairs today it was amazing. I am doing things I havent done in so long without even thinking about it.... so much improvement already. What scares me though is if this is some sort of temporary remission like I have been through before. How long till I know? Shall keep going till I can go no longer and not worry about such things.

bloo

nope tonsils were out when I was five. I was told that with JRA your RA factors is negative. My SED rate has been elevated for years but no one seemed to think there was a reall reason always said that I must have had a cold or something.. .... duh. How many of you get pretty bad muscle pain with this? That is the part I think the neurontin is helping. Since I have been feeling better the fatigue is improved which is good. I actually walked 2 miles yesterday then worked a 10 hour day and did good till I got home. Did the same thing today except working and not doing as good. but could be and have been worse. I always get pretty crummy by late evening and usually start running a fever then too. So far so good in that respect. I am also developing so really bad heartburn from the meds and their being increased which I hope will fade after I get used to the new dosage. Hey CMa is your RA factor elevated now? Oh and I was told there is no such thing as growing pains... you believe that?

thanks

bloo

 hey Camama,

wow, you've had a positive ANA for all this time eh?

hmmmm?...it must be very debatable among different schools of rheumatic practice; i've heard from all 3 rheummies that once you test positive for the rheumatoid factor, it will always be there.  it may fluctuate, but the RF will always show.

i'm not sure either if JRA shows sero-negative RF??? good question.

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babybloo, i am so very glad at how you're doing! keep up the good work.  your mobility sounds pretty darn good! from what you compared it to in the past! i wish you continued success.

physiologically, growing pains is a condition we all go through as young children.  growth spurts can cause bone pain, thus "growing pains".  if you look at how bones and osteocytes develop through life...it makes total sense.  but when we're kids....we don't give a crap! but growing pains is real....it's only when a youth comes into see a physician and they aren't showing textbook clinical signs of bone & joint disease the dos opt for the growing pain/depression cop-out.  bologny!

take good care

You're absolutely correct Mark!