Hello, I am new

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

babybloo
Regular Member


Date Joined Aug 2005
Total Posts : 289
   Posted 4/2/2006 10:02 AM (GMT -7)   
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


dx:  Probable Systemic Juvenile Rheumatoid Arthritis: otherwise known as Adult onset Still's Disease. Asthma, hypertension, hypothyroid
 
Meds: Indomethacin TID, Neurontin 3600mg, Protonix 40mg QD, Singulair 10mg, Maxair, Advair 250/50, Diovan 160mg QD, Synthroid .1mg QD, Women's One a Day, B6 and B12,  Ultram 400mg.
 
One Day We Will All Live Again!

Post Edited (babybloo) : 4/2/2006 11:05:48 AM (GMT-6)


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 4/2/2006 6:13 PM (GMT -7)   
Hey bloo, welcome to healing well... there are a bunch of people here that suffer from RA and/or JRA... I have PA and I used to have Grave's disease (hyperthyroid) but since my thyroidectomy, I have am hypothyroid... Lucky us huh? Your rheumy may put you on a type of TNF inhibitor like Enbrel or Humira, or may try and give you Methotrexate.... Your doc sounds like he needs to go to sensitivity training... hopefully whatever rheumy you pick will be a little better... Good luck to you, keep posting and let us know how you are doing... Duck
Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
-Currently taking 50mg shot weekly of Enbrel
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Current Meds -  Enbrel/Prevacid/Synthroid
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots


babybloo
Regular Member


Date Joined Aug 2005
Total Posts : 289
   Posted 4/2/2006 6:51 PM (GMT -7)   
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
dx:  Probable Systemic Juvenile Rheumatoid Arthritis: otherwise known as Adult onset Still's Disease. Asthma, hypertension, hypothyroid
 
Meds: Indomethacin TID, Neurontin 3600mg, Protonix 40mg QD, Singulair 10mg, Maxair, Advair 250/50, Diovan 160mg QD, Synthroid .1mg QD, Women's One a Day, B6 and B12,  Ultram 400mg.
 
One Day We Will All Live Again!


elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 4/3/2006 6:08 AM (GMT -7)   

Hi Babybloo.  Welcome to healing well.  Glad to hear that you're with a more tactful doctor, and that you're actually starting to feel better!  My response to a doctor telling me I needed a shrink might be "hey, you'd feel pretty crazy too if you had to deal with these joint pains every day, all day."  One question for you--how do they tell the difference between RA and JRA?  Other than age?  It's very possible to have sero-negative RA as well?  Likewise, it's possible to have a positive RF, and not have RA?  I was 35 when I was diagnosed with RA.  JRA never entered the picture, and I assumed that was because of my age.

Elcamino


babybloo
Regular Member


Date Joined Aug 2005
Total Posts : 289
   Posted 4/3/2006 6:15 AM (GMT -7)   
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.
dx:  Probable Systemic Juvenile Rheumatoid Arthritis: otherwise known as Adult onset Still's Disease. Asthma, hypertension, hypothyroid
 
Meds: Indomethacin TID, Neurontin 3600mg, Protonix 40mg QD, Singulair 10mg, Maxair, Advair 250/50, Diovan 160mg QD, Synthroid .1mg QD, Women's One a Day, B6 and B12,  Ultram 400mg.
 
One Day We Will All Live Again!


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 4/3/2006 10:39 AM (GMT -7)   
Hey Bloo... Erin is gonna love you! She'll be along shortly, she is a wonderfully talented nurse that has a lot of the same problems as you as well as the rest of us... Keeping posting! Duck
Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
-Currently taking 50mg shot weekly of Enbrel
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Current Meds -  Enbrel/Prevacid/Synthroid
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 4/3/2006 1:39 PM (GMT -7)   

yeah  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!  confused wowhee!!  Ducky yeah, you were right. no I'm not a sicko babybloo...  tongue  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  eyes ; 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. tongue 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. sad 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 


Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 4/3/2006 1:40 PM (GMT -7)   
Ducky, you know me too well.
LOL.
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 4/3/2006 6:28 PM (GMT -7)   
Who loves ya' baby? :) hee hee hee
Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
-Currently taking 50mg shot weekly of Enbrel
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Current Meds -  Enbrel/Prevacid/Synthroid
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 4/3/2006 6:45 PM (GMT -7)   
U DO ;) hee ha tee hee hee
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


babybloo
Regular Member


Date Joined Aug 2005
Total Posts : 289
   Posted 4/3/2006 7:40 PM (GMT -7)   
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
dx:  Probable Systemic Juvenile Rheumatoid Arthritis: otherwise known as Adult onset Still's Disease. Asthma, hypertension, hypothyroid
 
Meds: Indomethacin TID, Neurontin 3600mg, Protonix 40mg QD, Singulair 10mg, Maxair, Advair 250/50, Diovan 160mg QD, Synthroid .1mg QD, Women's One a Day, B6 and B12,  Ultram 400mg.
 
One Day We Will All Live Again!


CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 4/5/2006 6:46 PM (GMT -7)   
Hey Babybloo and welcome.
 
I had JRA as a child...in my late teens and early 20's I had a lot of problems, but since the blood tests showed a normal RA factor and SED rate, they told me I was in remission (???but yet they could not explain the problems!) Then when I was 25, all heck broke loose  - now I'm dx with Psoriatic and Rhuematoid arthritis.  They gave me NSaids as a teen (after years of it supposedly being 'growing pains' and going to numerous doctors) but I got very little results from them. I'm on a DMard now that is helping, but isn't foolproof.
 
I also had a severe case of EBV a few years back - that, by the way, could be the reason for the enlarged spleen. The mono/EBV causes my liver and spleen great grief.
 
Do you still have your tonisls, by the way? I was sick ALL THE TIME when I was a child, I finally got my tonsils taken out when I was 16 and it helped a lot for a long time. Now, with the liver problems that have continued on since I had mono, I'm sick a lot again.
 
Good luck. If the medicine is helping, then wait a while before you try cutting back again.
***
 


babybloo
Regular Member


Date Joined Aug 2005
Total Posts : 289
   Posted 4/5/2006 7:03 PM (GMT -7)   
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
dx:  Probable Systemic Juvenile Rheumatoid Arthritis: otherwise known as Adult onset Still's Disease. Asthma, hypertension, hypothyroid
 
Meds: Indomethacin TID, Neurontin 3600mg, Protonix 40mg QD, Singulair 10mg, Maxair, Advair 250/50, Diovan 160mg QD, Synthroid .1mg QD, Women's One a Day, B6 and B12,  Ultram 400mg.
 
One Day We Will All Live Again!


CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 4/6/2006 9:55 PM (GMT -7)   
Hmmm, I think a lot of people will disagree with whoever told you there was no such thing as growing pains!
 
Yes, i get a lot of muscle pain with flares, etc.

I do not know about my RA factor - I think it varies a lot as well as my SED rate. I know my ANA is positive/high -whatever it is, very regularly.  My last blood work taken (in Jan), I recall had a normal WBC and I believe RA factor, yet 5 hours after the test, I came down with the nastiest of flus that knocked me down for 6 weeks!
 
My heatburn was horrible! I thought i was having heartattacks constantly only to find out it was acid reflux from the meds. I know it stinks to pay more $$$ for med and pop more pills, but ask your doc for something. I have had luck with Prevacid and Nexium...though I know someone who got headaches on both of them.  My PCP said these little guys really help buffer your stomach when taking meds and will help prevent you from getting serious problems.
**
 


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 4/6/2006 10:08 PM (GMT -7)   
cool  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??? confused good question.
*****************************************************************
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
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


bromark
Veteran Member


Date Joined Oct 2005
Total Posts : 600
   Posted 4/8/2006 8:44 AM (GMT -7)   
babybloo
I have had a similar experience with a rhuemy. He is am associate proffessor of rhuematology at a state school. He dx me with fibro on the second visit. On the third visit he told me he had done all he could for me and then sent a recommendation to my pcp that I have a mental evaluation. I went to a new rhuemy and she found a lot of other stuff going on. She confirmed the fibro but also found osteoarthritis in almost every joint in my body and bone spurs in both hips, c2-c7 and L1-L5. She also found that I have low bone density a low vitamin D level and that my immune system was not working properly. It seems that some doctors make a decesion about what you have and stop there and are unwilling to look past their initial dx. Others are willing to listen and work to help. Remember that just like there are docs that don't listen there are also some who are willing to listen and work to help you. Keep looking till you find a good one that you can build a great relationship with.

Mark
We make a living by what we get; we make a life by what we give.
Sir Winston Churchil
 
A cheerful heart is good medicine,
but a crushed spirit dries up the bones.
Proverbs 17:22


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 4/8/2006 9:43 AM (GMT -7)   
You're absolutely correct Mark!
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.

New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, December 06, 2016 11:04 AM (GMT -7)
There are a total of 2,733,556 posts in 301,133 threads.
View Active Threads


Who's Online
This forum has 151271 registered members. Please welcome our newest member, Namie.
334 Guest(s), 11 Registered Member(s) are currently online.  Details
Bololidat, Serenity Now, Scaredy Cat, Tick41, mpost, jabele, pmm73, WORLD HEALING, peanut307, Traveler, iamamess


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer