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Does it get worse over time?

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Posted 12/29/2010 8:55 AM (GMT 0)
Hi, I'm 15 years old and just barely diagnosed with lupus and Rhuematoid Arthritis. I play the piano, dance(though I had to stop due to my disease), snowboard, wakeboard, wakesurf, rockclimb, hike, and many other things. I'm currently on Prednisone and Mobic and seeing a great Pediatric Rhuematologist. I really don't know very much about my disease. Does it get progressively worse? I'm just worried that it will get to the point where I won't be able to participate in all the activities I am involved in. If it does get progressively worse, how can I slow this process? The Prednisone is helping some but I can't be on it forever. I am as active as I can be and I eat healthy, is there anything else I can do?
Posted 12/29/2010 3:36 PM (GMT 0)
I can't speak for Rheumatoid arthritis with any authority; my general impression is that it does get worse over time, but can be slowed down.

Lupus does all kinds of random things -- it can stay the same for many years, get worse, or go into a "inactive" phase -- or do all three in turns throughout your lifetime.

With Lupus, you should be on Plaquenil, that is the only thing known that might slow down disease progression. Often a rhuemy will use something like Imuran or Cellcept to help decease your need for Prednisone.

After 8 years where it got worse before it got better, Imuran didn't work for me but Cellcept did and now I am much better and only on 2 mg of Prednisone (still going down). Other people have great results with Imuran but don't respond to Cellcept.

Of course, due to your age and the fact that you are still growing, some of these meds may be inappropriate for you -- or they may be problems due to the RA.

I don't know how much Pred you are on, but while on it make sure you are eating enough Calcium!
Posted 1/3/2011 11:48 AM (GMT 0)
Hey there! To answer your question, in my opinion it would be how YOUR own body responds to the medications and lifestyle changes we have all had to make. But to keep disease activity low, you really need to listen to your body and your doctor(s). If you are too tired to do any of the activities you listed above, DON"T do it! Continue to keep taking the medications you have been given even if you feel better. Also, sometimes you don't feel like the medications are working but a week or two after you might stop taking them, you will most likely ending up regreting stopping taking them! Continue to eat healthy, exericise is great for your body, so continue that as much as you can and remember to listen to your body!!!
Posted 1/13/2011 6:07 AM (GMT 0)
Thanks for your replies. I'm going off the prednisone in about a week so I guess we'll see what happens! I'm sorry to hear about your diagnosis...it would be a lot harder if they didn't have all the medication they have now to go through that at this age! Do you have Raynauds disease with the lupus? If so, has that ever gone away? Or is it here permanently? Emotionally I'm actually doing surprisingly well! After I got over the initial shock I was okay! I honestly don't know if there is a support group and I think my social worker said something about a lupus association...haha I'm not too worried about that though I have a very supportive family and church! Haha yeah I didn't think the pain medication was working for me so I didn't take it for just one day and was miserable!! Thanks so much for the information!
Posted 1/18/2011 9:15 AM (GMT 0)
Hi

I really agree with Amy - get to know your body - it will tell you what you can/can't do. Also take your doctors advice. Overall though be kind to yourself. You might need to change your expectations about all the activities you do.

On the positive side and sharing my experience - I was diagnosed with Lupus Nephritis in Sept 2009 and at the time was ballet dancing practically every day. I've had to cut down but I'm still involved teaching, and doing some dancing (but not pointe work anymore). You'll work it out and I wish you all the best. Keep your positive attitude!
Posted 1/21/2011 1:36 AM (GMT 0)
I'm sorry to hear you're not dancing as much. I too was dancing almost everyday and was on pointe for three years before I had to quit, I miss it!!! Maybe I'll be able to dance some in the future :)
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