I've had some concerns. I had a list of things to bring up at our last infusion, but since the doctors weren't in, I thought I'd wait until our next appointment. Also, her labs were only 2 points out of the high range, so I was concerned that it could be a flare starting or it could be that her dose of Methotrexate was too high. She was hoping that would be it. Emily has always been the child that actually liked her Methotrexate shots, but she says that she isn't as fond of it at her current dose. Well, I guess I worried for no reason on that note. When I called to discuss a few things today, the nurse practitioner said that her labs look great! I had thought her liver enzymes looked high, but she said that everything is right where it should be. We still had other things to discuss, though.
While we were at Occupational Therapy yesterday, her therapist looked at her elbows again. She determined that she has tendonitis in both elbows, her left being worse than her right. She and the nurse practitioner both agree that it could be regular tendonitis or it could be from the Dermatomyositis. The current plan is to increase her NSAID (Mobic) to the correct dosage for her weight. Until that kicks in, we should double her Prednisone for 3-5 days. We can use ice or heat, and rub in BioFreeze as needed. We will also pay attention to what her appetite does during this time. She said that her poor appetite may be direct result of the Prednisone taper; it may be a sign that she isn't ready to taper down any more. We should monitor her appetite on the increased dose, then monitor it again on her current dose when we go back down.
My last concern was how often she's been getting sick. It seems like she's been sick constantly. Every month she's been on at least one, sometimes two, antibiotics. Granted, she's on 3 immune suppressors, but she was on 2 for years and didn't get sick as often. I have been concerned about the Pulminary Hypertension risk (23%) that she faces from the Mixed Connective Tissue Disease. She has asthma. I worry about this more, especially considering that every illness that she has had in the past 6 months is from an upper respiratory, or a direct result of asthma. The ARNP said that it could be that her immune system needs a boost from all of the suppressors. That could be determined through labwork, so they will add that immuno- panel to her list for next time. I requested repeating her Pulminary Function Test. Her last PFT was on her last day in the hospital. She just wanted to go home, she didn't want to be there, she was scared, and she was simply not having this. Needless to say, her test results came back "inconclusive". Since pulminary hypertension may not be picked up on during regular exams, I think this is a great idea, and should give us peace of mind.
All of this together *could* mean she may be starting to flare. I have no idea what to think at this point. I had thought that her arthritis was flaring, until I saw her labs, which made me believe that it was the JM flaring. Since I read the enzyme labs wrong, and the ARNP says even the inflammatory markers (that I didn't see before) came back great, it no longer looks like the labs point to it. But I'm still confused on the elbows. And the tummy. <*Sigh*> We'll get it figured out.
So, we have a full boat next appointment. What will we do to top that? Drive straight to DC for the Juvenile Arthritis Conference! This works out better, actually. Our appointment is on the 6th and the conference is the 7th. We'll be 2 hours closer from the hospital, this will save us a trip in a way. And we can stop somewhere overnight, taking our time. I think it's perfect. This way we won't be in a hurry, we have some down time, stopping time, and we should get there in decent time. All the way around I can't wait! So many people that I can't wait to meet "in person", so many questions that I have, and so many historical sights that I can't wait to show my children!!! This is going to be so wonderful! :) Thank you, Arthritis Foundation!!!
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