Guest guest Posted April 7, 2004 Report Share Posted April 7, 2004 Alia:I know that you probably already knew that but seeing it in black in white has quite an impact. Another fork in the road. 15 mg would make more sense, just due to needing to be at a therapeutic dose. You know we are all here for you. I remember when they told us Rob 'might' have JAS (juvenile ankylosing spondylitis), and I was freaking out. I was hoping so badly it wasn't true. When his HLA B27 came back positive, and they said in all likelihood he had it, I couldn't really face it. Now when I see some of his records it still jumps out at me, written in black and white...but we have come a long way. I hope that Caroline gets well controlled and that you guys have a much better year. I am so looking forward to meeting you at AJAO! and Rob 14 Spondy On Wed, 07 Apr 2004 15:19:35 -0000 "Alia Pranke" <ajpranke@...> writes: Well. We got a letter from Caroline's Rhuematologist and she has been reclassified to Polyarticular - Onset JRA with Iritis/Uveitis. Ugh. We are really bummed, but we knew that it was a possibility. I guess we aren't going to lick this thing as quickly as we had hoped!I also learned through her letter that she is actually on 15 mg/week of MTX and 30mg/day of Prednisone, although we knew about the Pred. I thought she was on 5mg/week of MTX. I guess that is what you get for guessing! LOL!Alia and Caroline, age 2, now POLY and Uveitis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2004 Report Share Posted April 7, 2004 Thanks . We really are just taking it all in right now. My husband and I keep saying " this must be a typo " , she's wrong - we know it! But, I have suspected all along that this was the path that we were going to take. Caroline is ANA negative which I always thought was weird. The Uveitis is throwing us for a loop, but what doesn't about this disease. Right, now we are just hoping that little Miss C can handle the next taper. Tomorrow's is the eye appointment follow up. We HAVE to get more good news. I don't think my old body (haha - I just turned 30!) can handle much more... Alia and Caroline, age 2, poly and uveitis > Alia: > I know that you probably already knew that but seeing it in black in > white has quite an impact. Another fork in the road. 15 mg would make > more sense, just due to needing to be at a therapeutic dose. > You know we are all here for you. > I remember when they told us Rob 'might' have JAS (juvenile ankylosing > spondylitis), and I was freaking out. I was hoping so badly it wasn't > true. When his HLA B27 came back positive, and they said in all > likelihood he had it, I couldn't really face it. Now when I see some of > his records it still jumps out at me, written in black and white...but we > have come a long way. > I hope that Caroline gets well controlled and that you guys have a much > better year. I am so looking forward to meeting you at AJAO! > and Rob 14 Spondy > > On Wed, 07 Apr 2004 15:19:35 -0000 " Alia Pranke " <ajpranke@j...> > writes: > Well. We got a letter from Caroline's Rhuematologist and she has > been reclassified to Polyarticular - Onset JRA with Iritis/Uveitis. > Ugh. We are really bummed, but we knew that it was a possibility. I > guess we aren't going to lick this thing as quickly as we had hoped! > > I also learned through her letter that she is actually on 15 mg/week > of MTX and 30mg/day of Prednisone, although we knew about the Pred. > I thought she was on 5mg/week of MTX. I guess that is what you get > for guessing! LOL! > > Alia and Caroline, age 2, now POLY and Uveitis > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2004 Report Share Posted April 7, 2004 I'm sorry to hear about Caroline's diagnosis.. I didn't know you could have Uveitis and not have a positive ANA.. gosh I learn something new about this disease every day. And 30 is not old. Your as old as my sisters.. well one of them is 34 the other is 30.. but yeah your not old.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 what i read and what yall and melissa go through at times is not by the book so to say melissa is ANA negative but has had symtoms of someone ANA positive her sed rate is also warped on a flare her rate has been 3 but in pain a 11 and swollen when her sed rate went to 22 no swelling but pain scale was 10 i dont think any book can be totally right because of this disease can spring a new on us new symtoms like with the rash situation it springs up then goes away the doctors look for a pattern to follow lolol so really thats why its best to keep your own journal so you will know the pattern and use the books as reference to get knowledge from it and ask questions Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2004 Report Share Posted April 9, 2004 Robbin - This is SOO very true! Forget the books and the experts! I rely on all of you for my expert advice! Alia and Caroline, age 2, poly and uveitis > what i read and what yall and melissa go through at times is not by the book > so to say > melissa is ANA negative but has had symtoms of someone ANA positive > her sed rate is also warped on a flare her rate has been 3 but in pain a 11 > and swollen when her sed rate went to 22 no swelling but pain scale was 10 > i dont think any book can be totally right because of this disease can spring > a new on us new symtoms like with the rash situation it springs up then > goes away > the doctors look for a pattern to follow lolol so really thats why its best > to keep your own journal so you will know the pattern and use the books as > reference > to get knowledge from it and ask questions > Robbin Quote Link to comment Share on other sites More sharing options...
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