Anna 13 godina, >10 godina JIA i uveitis na oba oka (lijevo gore)Anna was diagnosed with a mild case of JRA in July 1999. JRA is limited to her left knee.
http://annasjra.blogspot.com/Anina mama
scottandtammyz@gmail.comOvo je tako lijepo rekla njena mama:
Even though I like to post updates (I remember searching for real stories of kids with Juvenile Arthritis when Anna was first diagnosed--I know how much that means to many parents of newly diagnosed kids), I find that I often hesitate now to write about it, because I don't want anyone to think I'm whining or complaining about the issues we face. (Written words without facial expressions and vocal inflections can often be interpreted in a way we never intended.) In the past 10+ years of this JA journey, I've learned so much about myself and how I handle all of this, about life and the various trials we all face, about my faith and understanding of our Creator God who loves each of us (more than we'll ever understand) and doesn't cause anything evil, but who knows all (even before we do), sees all and hears us and guides us through, providing us with His strength, granting doctors and caregivers wisdom and knowledge and understanding (I do pray for that specifically!).
So another unwelcome bump in the road for us. Another reminder to myself that I have never wanted Juvenile Arthritis to define who Anna is or who we are as a family. I don't want it to become the main focus of our lives. We've done a much better job at that lately then I did in the early years, I must admit---it just took awhile to adjust and get my "sea legs," as I like to think of it. The waves (new developments) don't throw me off balance like they used to.The one thing I've definitely learned through this and other family events over the years: It's really better not to know what the future might hold, but to take each day as it comes. So that's what we'll do again. More pills for Anna, but her knee is not nearly as painful these past two mornings as it was on Friday. Life goes on, and our Anchor (our faith in a loving, compassionate God) holds.
Mraonicus, evo i ona misli kao ti o kapima:
Steroid eye drops should not be ruled out. While some would rather not use these in cases like Anna's, because of the increased risk of cataracts and glaucoma (especially at such a young age), these risk factors can be addressed with surgeries if necessary. Many of the new medications have much more serious risk factors (including malignancies---ones not normally seen in children). Anna's eye inflammation is not really bad---it's mainly just stubborn. Is it wise to go for the "really big guns" with such expensive and risky medications (when we don't have a whole lot of information on their track record) when steroid eye drops could keep the inflammation down? This is a very serious question. At least one reknowned eye specialist would rather prescribe the steroid eye drops and "deal with the morbitity that we know rather than deal with the morbitity that we don't know."
Humira (injection every ten days),
Methotrexate (15 mg. once a week orally),
Leucovorin (5 mg. 2x week),
Claritin (on Humira shot days to prevent hives/itching at the injection site),
Pred Forte eye drops (twice daily),
daily Calcium and multi-vitamin supplementsOctober 1 2001
Anna had an opthamologist appointment (first one since July, when her eyes had remained totally clear of inflammation). This time, however, the opthamologist found a "rare cell" [of inflammation] in each eye. He gave me a choice of treatment, and I chose to "wait and see", meaning we did not go back on drops, but we go back in three weeks to see if the inflammation will go away on its own or if Anna's eyes are gearing up for another flare.
November 2001
The inflammation in her eyes had quieted down, so we scheduled the next appointment for mid-February.
February 2002
"Just" a few cells of inflammation in the right eye. But he's trying a different medication this time--Pred Forte. We go back on March 4.
Tuesday, October 25, 2005
I'm creating this blog so that I can more easily update everyone on Anna's JRA Journey! Anna is now eight years old, and except for daily medication (folic acid & Pepcid Complete) and weekly medication (methotrexate) and daily eye drops (for the uveitis), she seems like a very normal child.
My memory is a bit fuzzy at this point (that was 18 months ago!), ..Even after our very last dose of Vioxx, Anna continued to do well. So well, in fact, that her doctor decided to try lowering the Methotrexate (we never know how she'll do unless we try!). That was in the spring of 2005. Her doctor was hoping that maybe if she continued to do well, we could get her off medications before school began. That was not meant to be. Once we lowered her dose, her eyes flared. So we increased methotrexate (back to what she was taking initially---7.5 mg weekly). During that time, Anna's eyes didn't respond at first to the stronger eye drops prescribed for the flare. So we increase the methotrexate again. Anna started vomiting at 2:00 a.m. each week after her bedtime dose of methotrexate.
So in July, we learned to give injections to Anna, and she now receives methotrexate by injection. (12.5 mg. weekly). She does okay with that, except that she's starting to experience anxiety each week during the hour before her shots, when we put Emla cream on to numb the area.
Thursday, November 10, 2005
Both eyes continue to have a trace of inflammation, but the left eye is worse of a trace than last time. So for the left eye, we have to increase the Pred Forte drops to twice a day. I feel like this uveitis stuff is such a intricate balancing act--worrying about pressures rising with the increase in drops (although Anna's pressures are at 17 and 18 right now---not bad by any means). Last time she was on drops twice a day, they went up into the mid 20's, and we don't like them to be there. I've never had much patience for intricate balancing acts.
Tuesday, May 23, 2006
the right eye is totally clear. The left eye still has just a trace of inflammation, but less than six weeks ago. The increased methotrexate is doing its job, and Anna hasn't experienced many side effects so far (except from a little nausea and vomitting a few hours after the shot).
Monday, March 26, 2007
A few months ago, Anna's left eye had significant inflammation. We tried increasing the Methotrexate. No change. Added Cylcosporine. In two weeks, the inflammation was even worse. Now we've increased the Cyclosporine and added Pred Forte drops (and a drop at night to dilate her left pupil). As of Friday past, there was some improvement (probably due to the eye drops). The eye drops can only be temporary, because the Pred Forte drops have a history of making Anna's eye pressures rise
Wednesday, April 11, 2007
Well, last appointment was Friday (April 6). Anna's eyes are slightly improved, but not nearly where the ophthalmologist wants them to be. He had a lengthy (for him) discussion with me, and he really feels that we're heading towards Humira or Remicade
Friday, April 20, 2007
Better." We keep doing what we're doing (Methotrexate, Cyclosporine, Pred Forte drops, dilating drops, Leucovorin).
Monday, May 14, 2007
The right eye is clear; the left eye has trace cells. We can eliminate the dilating drop at night to the left eye and the daily Pred Forte drop to the right eye. We can decrease the Pred Forte drops to the left eye from three per day to two! Anna's eye pressures are decent, also. Right eye is at 20---that should go down now that we are eliminating the Pred Forte drop. Left eye is at 17, which is a good number within the normal range).
Friday, June 15, 2007
eyes are the same as a month ago (that means that her right eye is clear, I believe, and the left eye still has some cells there, but much improved since the spring---February and March).
Thursday, July 26, 2007
No inflammation at ALL!!!!
Wednesday, September 05, 2007
a trace in the right eye
and 1+ cells in the left eye (for those unfamiliar with the rating system of eye inflammation
Friday, September 28, 2007
Three weeks ago, he counted 10 cells in Anna's left eye (in that measurement of light) and five cells in her right eye. This past Wednesday, he counted two in each eye. He was very happy! That is indeed good news, because the Intraocular pressure in Anna's left eye was up in the 20's, since she's been on the Pred Forte eye drops for that eye. So we're stopping the eye drops for now. (Pressures are very worrisome in the 30's, and she's not there, but 20's is "concern-worthy."
Friday, October 26, 2007
The right eye is essentially clear; the left eye has trace cells. Her pressures are back in the normal range (since we stopped giving her the Pred Forte eye drops). A good appointment. Other meds are still the same . . . still 150 mg daily of Cyclosporine and 20 mg Methotrexate weekly
Monday, December 24, 2007
right eye clear, and the left eye still has trace cells
Friday, February 01, 2008
No cells at all in the right eye (although the pressure in that eye is around 21-22, which is interesting. Normal is anything under 18 or so). Still a trace in the left eye, but better than last time,
Thursday, March 13, 2008
But the eyes have not changed all that much in the six weeks since the last appointment
Monday, April 28, 2008
Her eyes continue to very gradually improve, as well. Right eye is clear; left eye has just a very occasional cell, hardly even worth a "trace" rating . . . the doctor said between 0 and a trace!
Thursday, June 12, 2008
They are all but clear of inflammation (just a cell or two floating around, but "well under control")
Friday, August 22, 2008
They look like fireflies!" Anna and I thought this exclamation gave us a great mental picture of what is going on in her eyes. We can handle a trace of "fireflies" in her eyes without too much worry. We just don't want those "fireflies" taking over.
Monday, December 15, 2008
Anna's eyes were totally clear of the inflammation. Her regular uveitis check was scheduled for about 10 days after this "Pink Eye Appointment." So we returned to the pediatric ophthalmologist for that appointment, only to find that a trace of white cells had returned to the left eye. Barely a trace, but a trace nonetheless. So we are keeping the same regimen of medication (the Cyclosporine, Methotrexate, Leucavorin, Pepcid Complete) for now
Monday, January 05, 2009
They are both totally clear of inflammation! At first, the doctor was planning to maintain Anna's current level of medications (and have us return in ten weeks),
Thursday, March 26, 2009
This was the first visit since we decreased the Cyclosporine by 25 mg. in January. We were hoping that her eyes might have remained quiet of any inflammation, with the hopes of decreasing the Cyclosporine yet again. That will not happen at this point. The doctor saw maybe one cell in each eye, so he categorizes both eyes as having "zero-to-a-trace" of inflammation.
Wednesday, June 24, 2009
she had developed
mid-to-moderate inflammation in her left eye. So the Cyclosporine dose has been increased by 25 mg. (She was taking 75 mg., but we're back up to 100 mg. daily).
Friday, July 03, 2009
the ophthalmologist describes as "unacceptable" inflammation in the left eye, after increasing the Cyclosporine four weeks ago. The ophthalmologist asked if we had ever tried or discussed options like Remicade or Humira, so I know that those options may be "on the table" eventually
Thursday, August 13, 2009
Anna had another eye appointment today. She's had inflammation in the left eye for about two months now (at least). Four weeks ago, it was determined that we could give the increased dose of Methotrexate a chance to work. Today, there is
still moderate inflammation. now we will switch to Cellcept (replacing her Cyclosporine with Cellcept, but continuing the Methotrexate).
Friday, October 02, 2009
There is no change in Anna's left eye, even after increasing Cellcept for the past two weeks (from 1,000 mg daily to 1,500 mg. daily).
Sunday, October 25, 2009
We've made the
switch to Humira. No more daily pills for now.
No more weekly Methotrexate shots (and the vomiting that always accompanied those shots). Those "pluses" are what Anna is focused on, so she's happy. After two months on Cellcept, the inflammation in Anna's left eye had not changed. In fact, the ophthalmologist explained that even though the inflammation wasn't terrible that day of our appointment, there were cells sticking/clumping together in the front of the chamber of her eye, which indicated that the inflammation is ongoing and fluctuating. Left with very few options, we've gone to Humira.
Sunday, December 20, 2009
Anna's eyes still are no better. In fact, the
left eye is worse than it was a month ago. Last month, it had 1+ inflammation (on a scale of 0-4), and this month,
the level of inflammation is at 2+. The right eye continues to have a trace[/b]--after being totally clear for many months before stopping two immune suppressant medications and starting on the biologic, Humira.We're increasing the frequency of the Humira injections. I'll give it every ten days instead of every two weeks
Tuesday, January 19, 2010
Anna had an appointment to check her eyes last Thursday. This comes one month after increasing the frequency of the Humira injections from every two weeks to every ten days. The right eye remains the same with a trace of inflammation; the left eye has improved by 50%. Last month, she had 20+ cells of inflammation in the little beam of light which the ophthalmologist uses to determine the amount of inflammation. This past Thursday, she had 10+ cells. So that's good.
Monday, March 15, 2010
Both eyes again have just a trace of inflammation. Eye pressure in each eye (17 in each, for those who are familiar with eye pressure numbers) is also very good, especially considering she has been on steroid drops. We can now drop the Pred Forte drops and go back in six weeks for another check
Wednesday, April 28, 2010
I prepared myself for a huge flare of the uveitis, since her joints have been flaring. But it wasn't so bad! Both eyes continue to have a trace of inflammation, albeit more than six weeks ago (but still a trace---not "number worthy").
Thursday, June 10, 2010
Although the right eye is "almost clear" (A big hooray for that!), the inflammation in the
left eye has increased to between a trace of cells and a 1 (on a scale of 1-4). Rheumatologist decided to increase the Methotrexate
October 01, 2010
The right eye is almost "perfect." The left eye has a trace of inflammation. I said "Oh, good!" (That IS good for Anna!!!---that left eye has sometimes been up to a "2" out of "4." So I'm thinking "trace" is good.) Well, Dr. M. made a little face and said, "Well, . . ." And then he decided that Anna should have Pred Forte eye drops twice a day for the next six weeks.
November 05, 2010
Trace of cells in both eyes. The good news is that the pressures in both eyes are just fine--for that we can be thankful
Thursday, January 13, 2011
The doctor found that Anna had barely a trace of inflammation in each eye. The ophthalmologist was pleased enough that we could decrease the eye drops to the left eye from twice a day to once a day. I think another reason he made that decision was that the pressure in Anna's left eye was higher than the right eye---still within normal range, but we don't want it to get any higher, and the Pred Forte drops have a history of increasing the pressure. We go back in early February for another check on the eyes, and to the pediatric rheumatologist in February, as well.
Friday, March 25, 2011
The first number (right eye) was 22; the first left eye number was 21. She took them again with results of 21 and 19. Not the best pressure numbers Anna has ever had.
Saturday, July 09, 2011
For the first time in I forget how many years, Anna's eyes are clear of inflammation. BOTH of them.
The pressures in both eyes were in the low-to-mid twenties, which is inching toward high, but the ophthalmologist wasn't overly concerned. We can decrease the Pred Forte drop to the left eye from daily to every other day. Humira and Methotrexate stays the same for now.