Thursday, February 17, 2011

Check up - 3yrs 3 months since diagnosis

Since Charlotte’s joints haven’t been an issue (its the eyes) since the diagnosis in 2007, she sees her pediatric rheumatologist every 6 months for check ups.

The latest checkup takeaways were:

  1. discussion of a different weaning approach
  2. leg discrepency
  3. conversation on a new study released regarding uveitis post methotrexate
  1. Discussion of a different weaning approach

Currently the plan from Dr. Foster is continue stretching out the remicade (not the amount) from 10 weeks (4 sessions) to 12 weeks (4 sessions) and as we do that we drop the Methotrexate .10mls each jump (from 10 weeks to 12 weeks).

Dr. Kingsbury suggests that if we drop them both together & then she has a flare, we wont know what worked and what didn’t.

So maybe the approach to weening is, stretch the Remicade as discussed. But do not change the dosage amount of the Methotrexate. When the Remicade is over (June 2012 will be the 4th sesssion at 12 weeks), continue taking Methotrexate for 6-12 months. See if she remains calm. If she does, then go off of MTX. If after that she flares, we have answered the question of Methotrexate working to quiet the eyes.

Does this make sense? It does to me, and hopefully its clear in my writing, but I really like this approach more, seems even more conservative than what we were doing & I am really like the ability to answer questions: what works, what doesnt?

If she were to flare again after getting off of both Methotrexate & Remicade, and we didnt know what held it, seems logical we would start at the beginning again.

Eye appts every month, every other month, maybe every 3 months at some point will be a part of life for Charlotte. It will be very important to be dilligent about having her eyes checked because that’s the only way to know if there is a flare of uveitis.

  1. Leg Discrepency

Such a bummer. Charlotte’s right leg is a good amount LONGER than her left leg. The right knee is what was the initial trigger of Charlotte’s arthritis diagnosis. And even though both knees have had arthritis in them, it was that right knee that was swollen, lived with it longer, and took the heat. So with all that blood rushing to that knee, it sped up the growth process. Over time, the length should even out (according to our Dr.), but we need to watch her & make sure that she’s not standing with one leg bent, she needs to be able to lock both knees. If she cant, then we would do some sort of support in the shoe (rip out the sole, add padding, glue it back).

For the JRA families that read my blog - would love to hear if you have had similar growth speed experience?

    1. New Study on Uvieitis post Methotrexate.

    A new study in the American Journal of Ophthalmology (Feb. 2011) evaluated the efficacy of methotrexate & the effect of its withdrawl on relapse rate of uveitis associated with juvenile idiopathic arthritis (JIA). Conclusion is that the longer one is on methotrexate the LESS likely they are to have a relapse in uveitis. Its because of this study that spurred our discussion of 1) Discussion of a different weaning approach.

    Now these 22 patients were ONLY on methotrexate. “The data also indicate that a longer period of inactivity of uveitis before withdrawal, together with older age and /or longer treatment with MTX, might protect against relapses of uveitis.” But that “time” is unknown.

    But that’s what spurred our discussion during this checkup. How about we wean one before the other so we can answer the question of what works and what doesn’t.

    I havent ran this new weaning past Dr. Foster yet, but have talked about this study with both the Ophthalmologist & the Pediatric Rheumatologist. Interesting stuff and I am so thankful for these trials... more and more helpful for the direction in which we head for her treatment.

    Loaded checkup :) Another one in 6 months.


    Baileysmama said...

    Seems similar to my daughter, Bailey! First Pauci-,.But BIG issue has been Uveitis! Now, Psoriasis added (Psoriatic).... She has atrophy in back of her left knee from a steroid injection 2 yrs ago & filling in some but can still tell where caved in part is (back of left knee -inside towards right knee)... Slight leg legnth discrepancy,... said we could do the insole thing or wait to see how it goes. Her left knee is bent more often than right. Whenever we have tried to wean her off remicade, at @ 8 weeks, it comes back harder each time! SO,.. 300 of remicade, 2 week, 4 weeks for several, then now on 6 week this month, so we'll see again!
    Bailey's Blog/Video:
    (Youtube & facebook links there as well) Your blog is beautiful!!! Mine is old computer dying,.. hope to update soon! Thanks for sharing!

    Dana said...

    Mia has the same issue with the leg discrepancy. Both knees have been hit with arthritis, but it is the left knee that was hit the most. Therefore, the left leg is longer than the right (about 2cm off, but enough to cause her spine to be crooked). Did they tell you how much longer her right leg is from her left? Mia's PT is concerned and thinks a lift needs to be put in. However, her rheumy said she has to be 2.6 cm off in order to qualify for a lift and since she is only 2 cm off she does not qualify. And, he said they can't do a bone scan to get an accurate measurement because she is not up for a scan until April. Personally, I think that is a load of crap. So, we plan to meet with a pediatric ortho to get a second opinion.

    Praying for you guys!!