Hi,
I am confused and need any info I can get. My 17 year old daughter has had symtoms of JRA for about 3 1/2 years. She has a positive RF factor and her ASO(?) panel was elevated. Then other times her blood showed nothing at all. She has seen a Rhuematologist 3 or 4 times and they said she probably does not have JRA because she has no joint damage. She continued to get worse. Having flare ups with joint swelling stomache aches a rash and headaches. They would last about 6 weeks and are starting to get worse and closer together. Her last flare up they her eyes swelled and her ankle. They tested her blood again and know says she has JRA and rheumatic fever. They checked her blood work up and said it showed the same thing 3 years ago. She is being treated for rheumatic fever and seeing a cartiologist tomorrow and rheumatologist on the 27th. But my question is are the two even related. Does she even have JRA? What should I ask the doctors. Any information will help Thanks
Dar
They actually think that untreated Rheumatic Fever may have a connection with RA. My mother believes that I may have had it as a child. And, seeing a cardiologist is a very good idea to rule out any changes in her heart since Rheumatic Fever can cause damage.
It sounds like the doctors are now trying to find the solution. The best thing is to read up on JRA and Rhematic Fever and come up with questions. The more informed you are, the better you will understand what they are investigating and you will be able to ask questions to improve her care.
Deanna thank you so much for responding to me. It has just been 3 years already and her syptoms seem to be getting worse and we can't find any answers. Can anyone tell me if her symptoms seem like JRA. She usually get stomache pains, a rash, then joint pain in bilateral (sp), headache, fatigue, doesn't feel like eating and the last episode swelling in her one ankle and her eyes. It usually last about 6 weeks. Now the flare ups are happen alot more often and seem worse. Now that they think she has rheumatic fever with it, we are even more confused. I have read every article I could find for the last 3 years. We just need to know.
I really don't know anything much about JRA. But it does sound like RA. And your blood work might not ever show any signs of it, but you can still get it. There are several people on here that had JRA first and they would be better sources of information.
There are several kinds of rashes that indicate autoimmune diseases. I believe Rheumatic Fever has a rash itself, but I'm not sure. Lupus has a rash. And, I have vasculitis which is more like skin lesions. There is also something called purparea (sp?) which looks like purple dots over parts of the body. If the doctors can't figure the rash out, take her to a dermatologist. If it is a raised bump of any kind, insist on a biopsy. This may help you get a diagnosis.
Bilateral joint pain is a classic symptom of RA, as is fatigue. A lot of people are not aware that RA can cause inflammation of the eyes. It also can cause inflammation of the heart and lungs. But these are much more rare.
Have they put her on any specific medications like prednisone or methetrexate? These are usually the first ones used.
It will be very interesting to see what the cardiologist has to say. I have heart problems with mine and my cardiologist has pushed to get the rheumatologist and pulmonologist involved earlier.
Make a list of all her symptoms and your questions. Having flares that often is common, but if she has JRA then it means she needs treatment. I often have stomach aches before a flare. And, unfortunately, RA can affect many systems in the body. It is called a systemic disease because it is not just the joints that are affected.
Hopefully, others who have had experience with JRA can jump in here and give you better information. I believe that you are on the right track with getting her to the cardiologist and rheumatologist. I know you are scared for her, but unless her symptoms become severe (then you would take her to the ER), the timing of your appointments sounds very good for getting to the bottom of this.
There are a lot of medicines available for treatment that were not even there a couple of years ago. So hang in there and let us know what happens. My prayers are with you.
So sorry you are going through this and I wish I could be more helpful.
I'm not a nurse and have no experience with JRA but I know in my situation and many others on the board it can a very long time t o figure out a proper diagnosis. It took me over 8 years of regularly seeing a rheumatologist to figure out I had RA in addition to several other auto immune diseases. There are over 100 varieties of arthritis alone and many other autoimmune diseases that can cause similar symptoms.You can have more than one disease at the same time.
Your job now is to do as much research on your own as you can so you can formulate good questions. Keep meticulous notes reguarding your daughter's symptoms and have them with you at doctors appointments. Keep all notes from other doctors together in a file you can take with you to various doctors. I keep mine in a big ziplock bag. The medications for autoimmune diseases are often the same for various diseases so it sounds like you are on the right track if you are seeing a rheumatologist as well as a cardiologist.
Wow, you guys are awesome. I found out more from you then any doctor or research I done. She is not on any medicine, because they can't diagonse her yet. I'm relieved (sounds funny) that it takes so long to diagonse. I thought we were just crazy. I am going to take all your advice and not give up and start taking precise notes. I keep a calendar with her symtoms, but now I will make sure I document everything and I just got all her records and photocopied them. I will use a ziplock bag (Great idea) She is seeing a new Rheumatologist on the 27th. The last 3 appts was a group thing and everytime she went in she saw someone new. This time we are going to CHOC hospital and hopefully they will find answers. Any more info you can give me is truly appreciated. You guys ROCK!! I'll let you know what the cardiologist says tomorrow.
Thanks
Darleen
With RA, that is a very bad practice not to try any treatment before you have a diagnosis. I suspect is because you didn't have a knowledgeable doctor examining her. I've also found that even doctors don't want to believe that children can have serious diseases and HMO doctors can be the worse.
If you don't get the answers you need from these new doctors, then take her to a children's hospital. I would be asking about prednisone and methetrexate considering how much joint involvement she already has. Do not take a "we will wait and watch answer." You've already been there, done that. If that is the answer you get now, look for a doctor that won't settle for that strategy.
Also, since you said she had eye problems, she should see an opthamologist for a full exam. Let them know that you are worried about RA and inflammation of the eye. You want an opthamologist, not a optometrist. They have much more training and do more extensive tests. The rheumatologist should be able to recommend a good one. Even if nothing is affecting her eye sight right now, they do field vision tests, take pictures of the nerve in the eye, etc. It makes a good baseline for future reference. And these tests are not painful, just a bit tiring.
Deanna, CHOC is a children's hospital and if it's the one I know of, it's awesome!Hi Everyone,
We are back from the cardiologist and feel like we may be getting somewhere. Okay, here we go, First of all the doctor was awesome. Her heart is fine.
Terinski, that's great about your daughter and I hope all you are feeling good today.
DAR
Dar,
Glad you are getting started. I have a feeling from what you said about your visit today that you are going to get some answers. If it is an autoimmune disease like JRA, it is a long haul. So, come back here and rant, scream, cry and laugh with the rest of us.
It sure beat ranting raving and screaming and crying all by yourself. And God know a good laugh does wonder.
DAR
These are actually very close and have the same type of symptoms when bad which is why they probably said she had both.
Does she have strep throat too? This is a big symptom with it.
I have had troubles being diagnosed they "think" i have RA cuz of the symptoms but i think it's the rheumatic fever myself. I had strep throat 6 times in one year about 10 years ago and at least once or twice a year for almost 10 years before that.
I also flaired up with each one which I wasn't supposed too but my body got inflammed.
Either way, threatment for both is about the same.
I wish her well, i too have had this since a child and know how horrible it can be for a kid to have.
Shanbr,
She did have strep throat right before the inflamation and she did have step throat about 4 years ago. Hey, By visiting the Cardiologist I did find out that there is 2 blood test that can positively detect the presence of Rhematic fever. You may want to ask your doctor to do the test or ask to see a Cardiologist, because as you probably know rheumatic fever can effect the heart. If you want I can ask her cardiologist what the test are. Hope this helps keep in touch
DAR
Just remember you need to push for some treatment even if they are not sure what type of inflammatory disease or immune disorder she has. The treatments are all the same. Even if a definative dx cant be made, dont let them send you out empty handed. Some doctors just need to know that you are aware of the situation. That you are okay with taking a chance and starting something. That something is better than nothing. (and I say "chance" for lack of a better word---like I said the meds are all pretty much the same)
Has she had muscle weakness as well?
Hey Crunchy,
Yes, I think she has had muscle weekness or her knees just hurt so bad. Let me explain, during one flare-up a year or 2 ago she could barely walk up the stairs. She had to sit down 2 or three times. That was pretty much the worst involving muscle. I am going to take your advice and make sure the doctor knows that I am willing to take a chance and that I am not going to stop bugging them until I have some sort of dx or treatment plan.
DAR