Tuesday, January 10, 2012

Update On Beth's Arthritis

Here is an update on Beth, which I sent out to her prayer partners:

Thank you for praying for Beth this month! We went to follow-up appointments with both her eye specialist and her rheumatologist.

Rheumatology news: No new joints are involved--still just the two knees! Both legs are still the same length. The doctor was happy with the effectiveness of the naproxen in controlling the joint swelling. Beth can walk right away when she gets out of bed about 75% of the time now, though stiffness is still there and some day and night pain. Between 3pm and 8pm are her best hours for comfort. She did lose 2 pounds in 6 weeks (she was already skinny!), so the doctor put her on a different anti-inflammatory, thinking that the naproxen is upsetting her stomach and making her too full too soon. Starting tonight she will get celebrex, which gets sprinkled on some applesauce. I've been giving her higher fat foods since learning of the extreme weight loss. I knew she was thinner, but didn't realize how extensive the loss was.

The weekly physical therapy is going well. She is walking on her toes to offset the knee joint pain. Over time that could lead to her calf and hamstring muscles becoming too tight. We are addressing that in therapy now (stretches).

Please pray that...she gains weight quickly and that no new joints become involved, and that her pain and night wake-ups subside. Taking steroids with anti-inflammatory meds increases the risk of bleeding or ulcer. Please pray for no side effects.

Eye news: The eye inflammation is completely gone! A huge answer to prayer! The eye specialist--who happens to be world-renowned for helping to develop a surgery for wandering eyes in children--seemed surprised that the inflammation was completely gone this soon. I think he was expecting a reduction only. (Prayer works!) In the next 25 days we slowly wean her off the steroid drops, seeing him again on the 25th day. If the inflammation is back when we return for follow-up, she will need a more aggressive therapy (possibly steroid eye injections, or methotrexate shots given at home weekly). Too much steroid-drop use puts her at risk for glaucoma and/or cataracts, so one of these other methods would be preferred this soon after steroid drop use. (Methotrexate is given for aggressive joint problems associated with Juvenile Rheumatoid Arthritis, but it also works on the eye inflammation because it suppresses the auto-immune response).

Please pray that...no more steroid absorbs into her blood stream, and for no damage done from the absorption. Her moods, her sleep quality, and her dreams worsened since starting the steroid, so he suspects some was absorbed into her system. Also pray that the eye inflammation never returns.

In his opinion, the worse thing that might happen to her eyes if inflammation continues, is that she might get cataracts from steroid use (which would be treatable). The eye inflammation is caused by the arthritis, but it will take a completely different course now--either better or worse than the joint issues, and either longer or shorter in duration. Some children get eye inflammation and never get any joint problems. They have the worst prognosis because the inflammation tends to go on a long time without symptoms and the vision gets progressively worse before a diagnosis is given and treatment begins. He thinks it's highly unlikely that Beth would ever go blind from her eye involvement. It is likely, however, that at some point she will get more inflammation. It flares like the arthritis does, but not necessarily at the same time. 

The rheumatologist tells it like it is, while the eye doctor sugar coats it a bit. I don't know which is better, from a parent's perspective? The rheumatologist warns that because Beth's eye involvement started so early, it could follow an aggressive and/or long-term course. (1/5 of arthritis children get eye involvement, but usually not this soon)

Thank you again for your prayers!  They helped a great deal with her eyes, her joints, and with our family's ability to cope with the life changes.

Never hesitate to share your own prayer requests with us, please. Prayer works!

With Love,
Christine and Family

Note: You may have heard some bad press on Celebrex, but the reported heart problems happen with much higher doses, and when it is used long term. It doesn't work on the stomach lining, so it has been prescribed for Juvenile Rheumatoid Arthritis since 2006 for patients who experience gastrointestinal problems on other anti-inflammatory meds (like naproxen or ibuprofen).


Lisa said...

Thanks for sharing, Christine. I have been diagnosed with some form of arthritis. My rheumatologist isn't sure what type it is. She at first diagnosed me with RA. Then she said it's Lupus. Now she says the 2 diseases are overlapping and I might have "Rheu-pus", a combination of both. I've been on many different kinds of immunosuppressants - all with bad side effects. And at one point, I ended up in ER with pneumonia from a weakened immune system. So I am going strictly "alternative" these days: a very limited diet, exercise, and some pain meds when needed. My symptoms have improved somewhat. But I'm still having flares every 4-6 weeks. It's not an easy road to travel.
I'm still praying for your little one...for no bad side effects from the meds, for weight gain, but most of all, for healing!
Love and prayers,

Christine said...

I will be praying for you, Lisa! I can't imagine all your responsibilities with that level of pain. My heart goes out to you, and now my prayers will, too! Thank you for your prayers as well!

Lisa said...

Thanks for the prayers, Christine!