Guest guest Posted January 24, 2004 Report Share Posted January 24, 2004 Patty: I was officially diagnosed with RA January 2003, although I have had finger and wrist joint pain for probably 5 years or more. My symptoms worsened in October 2002 (Rob's symptoms came on March 2002), so I do wonder if the stress of Rob's illness had something to do with the worsening of my own RA. My mother was diagnosed with RA at about the same age I am now. I remember she was on aspirin therapy and it seemed she was always getting joint injections. No, we don't see the same rheumy...Rob goes to a pediatric rheumatologist, I see an adult one. I like my rheumy ok, but I really like his nurse practicioner! We just click really well. They pretty much let me call the shots in my treatment. I began MTX April 2003 when I had a bout with eye inflammation. They didn't give me a choice on that one! Rob and I have different diseases. His is juvenile ankylosing spondylitis. It affects the joints and tendons. Notorious for affecting the hips and spine. Rob presented with bilateral hip effusions. He is likely to have lifelong problems with the disease, and likely to need hip replacements at an early age. You can control the disease with meds, but there doesn't appear to be any 'growing out of it'. The good news is that all the arthritis meds have calmed the inflammation in his lungs, and his asthma is soooo much better! It sounds like Caitlin is making headway with the MTX, with the pred tapering going on and the joints doing ok. How much MTX is she on? They may raise the MTX as the pred tapers to get her better control. We have similar problems with our endocrinologist. They are so rare, and so darned hard to get an appointment. We were supposed to have a recheck in December, and I try to schedule appts so Rob doesn't have to miss so much school. The last appt they take is 2 pm. And, they were closed the entire 2 week period he was off school for Christmas break. I have to take him out of school early on Tuesday to go for his recheck. What is irritating about that, the last time I took him out early, and we were in the waiting room so long that by the time he got called back, he could have left school at the usual time and still made his appointment. I asked them if I could call ahead and see how they were doing on time before I took him out of school, and they said they wouldn't do that. Not very user friendly, to say the least. I told them if they were the only doctor Rob had to see, I wouldn't mind as much. But he sees nephrology, rheumy, eye doctor, orthodontist, allergist, pediatrician for 6 month ADD checkups, and infectious disease doctors. He misses so much school because of all that! I feel sorry for the endocrinologist's patients who are diabetic, because those kids have to be seen so much more often. I think it is shameful that they have such ridiculous office hours. Back off my soapbox. Hope Caitlin is doing well tonight and I'll look forward to your post about on the HGH list! and Rob 14 Spondy >Sorry to hear you are having a flare yourself. I > knew your son had > JRA, but I wasn't aware you had RA. When did your RA show? Is it > the same > as Rob's? Do you both see the same rheumy? > > How long have you taken MTX? So far Caitlin hasn't had any nausea, > but she > really hasn't been on it that long. She just took her 3rd dose > yesterday. I > will keep the splitting in mind just in case. > Caitlin has been having great days - a huge relief I know you all > understand:) However, every night the spots are back on her hands. > Last night she had > the spots and a little bit of the rash on her one hand and the back > of one > thigh. Joints aren't swelling though and her pain is in one hand, a > couple of > oints and minimal. She kept saying her muscles hurt so I had to > explain the > difference between what's a muscle and a joint. Something most > children don't > have to be concerned with, but Caitlin now has to be aware of. She > frequently > has a slight fever in the early morning hours and then it's down by > late > morning. Go figure. She is nothing what she was at the very > beginning of this > illness thank God. > > goes Wednesday to her endo. We are expecting snow and the > last time > we had it they (whimps) canceled. I was so upset. She had waited 6 > months > to get that appointment and with the cancellation she had to wait 2 > more damn > months:( Hopefully, they don't cancel. I am just like you: I, > too, have > wanted to measure her so many times, but stopped myself (don't want > to disappoint > her if it's not a lot). So I havne't measured her a single time - > good mommy > LOL. I am anxious to see if and how much she has grown. There was > a two > week period that she stopped treatment because of the dingy's at the > insurance > company and pharmaceutical company couldn't get in agreeance, so > hopefully, that > won't affect her to much, we'll see. We still have years to grow:) > I am > just so thankful she was identified, approved and started treatment > and has not > had any side effects (the two big ones). I do know her feet have > grown and we > have to go today and get new shoes WHOHOOO:) Her muscle tone (she's > > hypotonic) has improved too. > > Have a good one. > > Take care. > Patty > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2004 Report Share Posted January 25, 2004 In a message dated 1/24/04 11:56:11 PM Eastern Standard Time, snooksmama@... writes: << But he sees nephrology, rheumy, eye doctor, orthodontist, allergist, pediatrician for 6 month ADD checkups, and infectious disease doctors. He mi >> Hi : He certainly sees his share of specialists. It must be very difficult to schedule so many appointments and try to stay in school without having to leaving early for a doctors appointment. To bad the endo wouldn't cooperate. It's so irritating waiting in a doctor's office knowing that you could have stayed where you were and come later and still be on time because the doctor is behind schedule. My interist is always behind, he is one of these great doctors that acts like he has no other patients in the world to see but you and takes his time. This is great what that patient is you LOL, but when you're waiting ugghhh. However, I can call and see how far behind he is and come in accordingly. They are used to this from patients now LOL. Caitlin is currently on 10 mg of MTX. So far so good. I do wonder if the steroid dosage was higher if she would have joint pain/spots/rash on her hands. Hopefully, the MTX will kick in and control that soon. She is now on 6 mg of steroids in the am only. This Wednesday is her rheumy appointment. I am so anxious for her labs. Oops wait a minute, Jen's endo is Wednesday, Caitlin's is Tuesday. He had in mind a complete taper three weeks ago and the appointment day being her last steroid day. We'll see. I can't wait for Jen's appointment too WHOHOO. Hopefully, I will get good news on both:) Take care. Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2004 Report Share Posted January 25, 2004 Hi Patty, You guys will be in our thoughts this Tuesday, when you bring Caitlin in to see the rheumatologist. I hope the appointment goes well. When you have a chance, afterwards, please send in an update to the group to let us know what you learn during her visit. I hope the doctor is able to answer many of your questions and reassure you about Caitlin's current treatment plan. Aloha, Georgina Emeraldsx3@... wrote: > In a message dated 1/24/04 11:56:11 PM Eastern Standard Time, > snooksmama@... writes: > > << But he sees nephrology, > rheumy, eye doctor, orthodontist, allergist, pediatrician for 6 month ADD > checkups, and infectious disease doctors. He mi >> > Hi : > > He certainly sees his share of specialists. It must be very difficult to > schedule so many appointments and try to stay in school without having to leaving > early for a doctors appointment. To bad the endo wouldn't cooperate. It's > so irritating waiting in a doctor's office knowing that you could have stayed > where you were and come later and still be on time because the doctor is behind > schedule. My interist is always behind, he is one of these great doctors > that acts like he has no other patients in the world to see but you and takes his > time. This is great what that patient is you LOL, but when you're waiting > ugghhh. However, I can call and see how far behind he is and come in > accordingly. They are used to this from patients now LOL. > > Caitlin is currently on 10 mg of MTX. So far so good. I do wonder if the > steroid dosage was higher if she would have joint pain/spots/rash on her hands. > Hopefully, the MTX will kick in and control that soon. She is now on 6 mg of > steroids in the am only. This Wednesday is her rheumy appointment. I am so > anxious for her labs. Oops wait a minute, Jen's endo is Wednesday, Caitlin's > is Tuesday. He had in mind a complete taper three weeks ago and the > appointment day being her last steroid day. We'll see. I can't wait for Jen's > appointment too WHOHOO. Hopefully, I will get good news on both:) > > Take care. > Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2004 Report Share Posted January 26, 2004 Thanks Georgina, we are hoping the ice holds out or doesn't come at all in order to get to her appointment tomorrow. Take care. Patty Quote Link to comment Share on other sites More sharing options...
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