Monday, January 12, 2015
May 2015 be the year we've been waiting for...
Dear friends and family,
Happy New Year! I can't believe 2015 is upon us and we are starting our third year of Lucianna's battle with JIA and Uveitis.
Since August, Lucianna has struggled with several minor eye flares. They occur as soon as we wean her from the once a day steroid drop. So what does, "minor flare" mean? It means her Uveitis is NOT being controlled with the medicines she's on and anytime there is active inflammation, her eyes could be prone to damage. Doctors are now advising that a child must be in a medically induced remission for two years before any weaning off meds can occur. Every time there is a flare, even a minor one, that clock starts over.
So what is the plan to correct this pattern? Her dad and I have concerns about her treatment plan. Currently, she is on .8mls of Methotrexate taken orally on a weekly basis. With each flare, we've been advised to use steroid drops once daily, then once the eyes are quiet at the follow up appt, as a result of the drops usage, we are advised to wean off of them. As soon as she is off them, she experiences a minor flare again. Bad, bad pattern and a true remission only occurs without drops. Drops just mask the symptoms. As you know from my prior posts, steroid drops are not advised for long term use as they can cause cataracts and glaucoma. Lucianna currently has a cataract; luckily it's not affecting her vision. Our current ophthalmologist feels that a steroid drop a day is nothing to worry about. Other doctors do not concur with that philosophy.
So on January 20th, we are headed to see a new doctor and get his opinion on her treatment plan. This doctor trained with Dr. Stephen Foster, one of the leading Uveitis doctors in the country. I would like to hear what the new doctor believes should be our course of action.
Our only fear is adding more medicines that have a lot of side effects that are not easy for a parent to digest. Side effects that include risks of Lymphoma, etc. So we are at a crossroads. Do we take our chances with drops and hope this disease burns itself out, or take a different path that may bring us into a medically induced remission?
Stay tuned as we navigate the next steps. Thank you for thinking of us and remembering that even though she may "look ok"...she's not, she's simply medicated.
Lucianna's proud Mama
Posted by Nicole at Monday, January 12, 2015