Friday, November 05, 2010

Just a tiny wobble to the spinning plate of Anna's Uveitis . . . .

Another trip to see the pediatric ophthalmologist this afternoon. Worked out well (except for a REALLY long appointment because Anna needed her eyes dilated). Anna did not have school, so I rescheduled the appointment for today, instead of next week when Anna has an activity at school which she did not want to miss.

Anyway, he found a trace of cells in both eyes. Now I try to go in with no expectations (usually have plenty of other "stuff" of life to be thinking and praying about--Anna's issues--because they're usually rather mild compared to other kids with JA--are just one of those many spinning plates I mentioned in the last post). I was also figuring that five weeks of Pred Forte eye drops should zap out that little bit of inflammation from the last time (it has worked in the past). But no. That was not meant to be for now. I was just a little discouraged, especially when I heard that there were a few cells in the right eye, as well. That must have shown in my face, because the doctor (who usually does not like one bit of inflammation and is always eager to increase the biologics) said, "It's okay! She's doing fine, and we'll just keep doing what we're doing for now, and check back in six weeks." Now I do appreciate that, because I'm not eager to try one of the very few options we have left at this point, especially right before the holidays. The good news is that the pressures in both eyes are just fine--for that we can be thankful.

The not-so-good news is that the next appointment is just two days before Christmas. A few years ago, I made a mental note to never schedule an appointment in Hershey during the week before Christmas. I have to pass three major shopping areas along the way, and traffic is HORRIBLE. I found that out the hard way. But it could not be helped this time. We'll make the best of it.

Saturday, October 09, 2010

This plate is spinning along just fine! . . . .

After Anna's appointment with the pediatric rheumatologist yesterday, I was thinking that my life at this point in time seems like I'm one of those people up on a stage, keeping a row of plates spinning, trying to make sure that none fall and splinter into pieces. Since 1999, one of those proverbial plates has been Anna's arthritis and uveitis issues. Well, thank the Lord, "this plate is spinning along just fine." Since the spring, both knees have been injected (with steroids), and one side of the jaw has had an injection (for the second time). Anna had made two separate comments about her hips in the past week, so Dr. G. paid special attention in his examination of the hips, but he thinks that Anna's one comment was related to puberty and more of a tendon and hormone issue than a joint issue. That's a relief! We haven't had to deal with arthritis in the hips up to this point. As always, Dr. G. is thinking ahead and went over some other medication options (there aren't many options left for Anna) just in case the eyes don't settle down with the steroid drops and in the event that the joints flare again. But rheumatologists from all over the world will gather in November and discuss all of the medications "in the pipeline"---the ones that may offer hope which haven't yet been published in the medical journals yet. So more options may be available in the future.

We're staying with the status quo for medication: 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), and then the daily Calcium and multi-vitamin supplements.

So this is fine news for now (since I haven't noticed any major side effects with the current meds, I've become quite comfortable with where we are right now), and we don't need to go back until February. So I can now go back to keeping all of my other (many and various) "plates" spinning. (Just in case one or more of those "plates" fall and crash, though, I've had this one song playing in my head for several weeks---"You can come as you are, with all your broken pieces . . . . bring them all to Jesus; you can come as you are."--so working on "not worrying about anything but praying about everything"----there's a whole lot in our lives right now to be praying about!)

I will say, though---I attended a Beth Moore Bible Study right before picking up Anna from school and heading to Hershey. And Hershey was just my 2nd or third stop for the day before attending to my list of about five other things I needed to accomplish before evening. It was a GREAT morning for Bible Study, and I was thinking that one of the best ways to begin a very busy day (including an appointment with a specialist) is with a Beth Moore Bible Study (inspirational, thought provoking, deep, and encouraging) and great discussion with some authentic and wise women! Our next few appointments in Hershey (November for the eyes, February for the joints) are on Fridays---so maybe I can continue this trend (Bible Study, then appointments).

Friday, October 01, 2010

Another Eye Appointment for Anna . . . .

Life has been extremely busy, so we were so glad that it's been two months since we needed an eye appointment for Anna (last year around this time, I think we were going every two or three weeks). We've been going to this pediatric ophthalmologist for years, and since he had a major changeover in staff about two years ago, we've come to know and appreciate the people who work there. They got to know Anna well last year (since she's a "frequent flyer" there), and once when they realized that the ophthalmologist had called the pediatric rheumatologist and was waiting for a return call, they had gathered at the receptionist's window as we were leaving and whispered to us (with worried looks on their faces), "Is Anna okay?!" They didn't realize that this was just one of many of this type of call through the years, and it was really just a matter of coordinating systemic medication. I thought that was so sweet of them to care that much---made them feel like family members.

All that to say, I went in today (new office building---it's GREAT!) to find that I didn't recognize any staff there---but we were there just in early August! Only the doctor seemed to be the same! I did realize that one of the girls had just had a makeover, and I only saw the back of her, so didn't recognize her at first (new, lovely hair cut, and different type of clothes). Getting used to new staff when you've been going to a practice for years and years is not my favorite thing to do. They don't realize that we come so often that we know the "ropes" really well. We'll adjust. (The one new nurse seems very competent, but I really will miss the sweet and smiling receptionist!--I was told that she left for a job in her field of communications.)

So how are Anna's eyes? 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. But I'm happy about that, too! I would much prefer Pred Forte drops to increasing Humira or Methotrexate! And he usually prefers to increase meds than to prescribe drops for Anna---so this is good!

Personally, I am happy with the outcome of this appointment. (I've gotten used to a 'trace' of inflammation.) We go back in mid-November. Anna sees the pediatric rheumatologist next Friday.

Life is just crazy-busy right now.

Sunday, August 08, 2010

TMJ Injection, Eye Exam, Et. Al.

We had a long day in Hershey on Friday. We fortified ourselves with a breakfast from our favorite breakfast restaurant just a few blocks away from us: Diener's in Mechanicsburg. Found out that MASH class of 2011 can eat for half price for the entire school year until graduation! Anna's brother, Joel, may eat at Diener's more often this year! What a nice gift from the owner to the class of 2011!

After breakfast, we drove over to Hershey and dropped Joel off at Hersheypark. Then Anna and I went to find the new office which her pediatric ophthalmologist moved into in June. Beautiful, homey place---rooms which are much less "institutional". After the eye examination, Dr. M. rolled the stool over to the counter near where I was sitting, and looking and speaking rather seriously (so I was thinking, "Oh, dear . . ." and mentally prepared myself for bad news), he said, "Her eyes are . . . . better." Just a trace in each one! Such good news! I don't know whether the increased Methotrexate finally kicked in, or whether it's made a difference that Anna takes her calcium pill at a totally different time of day than the Methotrexate. Don't know why, but I'm so very thankful that we can begin the school year with an improved eye situation. We don't need to return until October!

After a quick trip to the scrapbook store at the outlets (for window shopping) and a visit to the Hershey Library (closed in preparation for their book sale, so we just sat outside on a bench to read our books), and a stop at the lab on the East Campus for blood work, we ended up at the main campus of the medical center and found our way to Radiology. We were recently there for Anna's MRI, so we're learning our way around that main building now (Anna's rheumatologist sees her in a different building on the other side of the campus).

A word of advice to anyone having any type of medical procedure done at a hospital, where you have various layers of people from different offices who are arranging and scheduling procedures: Always double check and verify the procedure you're scheduled for! I told the receptionist we were there for an injection to Anna's TMJ. As she checked her computer, she was confused, because the computer said that Anna was there for injections to her ankle or ankles. We got that straightened out, but I'm so glad that I mentioned what procedure we were there for. We think it probably became a problem when someone was coding in the procedure into the system. The receptionist told me to verify the TMJ procedure when we went back, and she told Anna to also verify the procedure, and told Anna that it's very, very important to speak up with confidence (not with hesitation) if she's ever in for a procedure and there's any confusion.

Anna had the same radiologist as last time (what an extremely nice doctor--we really like him!), but this time, she chose to have this done without any kind of anethesia (brave girl!). She told me that it was really rather cool. They had a screen where she could see her skull and her teeth and her spine, and she could see it move as she moved (she watched until it was time to get into place for them to insert the needle). That was so interesting to her. :o) It didn't take very long at all. I think I had only read a page or two of my book before the radiologist and nurse brought her out.

By the time we traveled over to Chocolate World to meet/pick up Anna's brother, Joel, neither of the kids felt like taking the Chocolate World tour. Hersheypark was PACKED with people that day, and we have many opportunities to visit Chocolate World throughout the year---when the tourists are gone. Good thing we didn't---The photo at the end of the ride would not have been a pleasant one. We were only about five miles out of Hershey when Anna was in misery and tears, with a hurting jaw and a headache (to be expected--she had just had 20 cc of cortisone injected into her tiny TMJ). Once we arrived home, she put some ice on her cheek and fell asleep on the couch. The next morning, though, she was feeling much more normal. It wasn't a "walk in the park" for those first few hours, but all is well in the end (at least for now).

Saturday, July 10, 2010

Injections. . . another one down, another to be scheduled

Another appointment with the rheumatologist yesterday, and another cortizone injection. Right knee this time. Anna was hobbling around yesterday (and we tried our best to make sure she had a quiet day--I think she watched two movies in the afternoon, but then she did help a little with cleaning the house for a bit--all without putting any weight on that newly injected knee---she said she could feel it if she tried to, and it "felt like she probably shouldn't." Good for her for "listening" to her body!). Today, she had another easy day, watching the 4-hour "Gettysburg" movie with her brother, her dad, and a family friend (annual tradition around this time of year in this household--but I went shopping!)

The MRI from June 21st shows active disease in the right TMJ, so another injection will be scheduled soon. Anna needed a clearance from the rheumatologist to run cross country this fall, and that was no problem. She's been running a little bit every day, except for yesterday and today, of course. She's pretty much "good to go" for right now, so she can work on her summer mileage again next week.

No change in medication for right now. The injections are probably the best way to deal with the current mild-but-active joint disease. Anna very rarely feels any pain even with active disease, so the mild-but-active disease doesn't bother her physically. (That's certainly something to be thankful for! I know that for many other kids, this is not the case.) We go back to the ophthalmologist in about two weeks, so we'll find out then how the eyes are doing.

On our own, we've "tweaked" a few things in this past week. Anna has been taking all of her oral medications and supplements before bedtime, but we're changing that a little, so that she's not taking calcium at the same time as anything else. A cousin (who works in a pharmacy) was telling me recently that calcium supplements absorb a lot of whatever else is taken with it at the time. So I'm wondering (after thinking about this for several weeks) if the calcium has been decreasing the effectiveness of the Methotrexate, maybe. It's worth a try to make some changes accordingly, even if I don't know for sure if this is truly the case in Anna's situation.

It's so hard to believe that the summer is almost half over! We've been very busy! Anna and I will be going to the beach with our church's youth group later this week. We love the beach, and we're looking forward to this time away!

Thursday, June 10, 2010

Another Increase . . . :o/

Anna's eye appointment for this month kept getting switched around, because her ophthalmologist is moving his practice, and the moving week has continued to shift (building inspections, etc.), and we've had to take into account our vacation schedule. (Even though we're taking some day trips and could be home here and there, I have learned to refuse to schedule appointments for any of us during our vacation week---more relaxing that way!). So the most recent move was from an appointment on June 21st, when Anna already has an MRI scheduled in the same town, to today (which was our originally scheduled date six weeks ago!). Not complaining! I know these things are unavoidable when construction is involved, and I was mainly feeling sorry for the lovely and sweet receptionist who has had to call a week's worth of patients (several times) to reschedule their appointments.

In many ways, I wish we could have kept this scheduled for after our vacation week instead of right before. 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). So the ophthalmologist called the rheumatologist to get some input (the rheumatologist prescribes and monitors all of the systemic medications). I was sincerely praying that the rheumatologist would once again just talk the ophthalmologist into prescribing eye drops for the short term to get the inflammation down (I knew that if Scott were with us, that's what he'd be wanting), but the rheumatologist decided instead to increase the Methotrexate (he did refuse to tweak the Humira---I gathered that from hearing one side of the conversation--and I'm very grateful for that! I've heard his views on that before, and I know that Anna is currently at the max for Humira to his way of thinking---he explained enough and so thoroughly that I am in wholehearted agreement on that subject.)

Even though Anna has been on higher doses of Methotrexate in the past, the increase in the oral form makes me a bit nervous. Her digestive system used to not handle five of those little pills very well. We're increasing to six.

This morning I was in a pretty good mood! I worked in the office until right before lunch, had the KLOVE station ( online feed, and I spent most of the morning singing along with the music as I worked to get everything done and was eagerly anticipating not having to show up at the office for about ten days. (Enough to thrill anyone!) Then I called to check on the church's laptop (at the "hospital" at Staples with the EasyTech guys), and they said that the motherboard has been corrupted and will call me at home with a quote. (Hmmm...not the best of news!, but I could put that on the back burner for a little bit). Anna's eye appointment wasn't all that bad (could have been a whole lot worse), and I'll work through my angst about the increase in Methotrexate, and it will all be alright. We'll put that out of our minds long enough to enjoy the events and family time we have planned for the upcoming week. At least we don't have another eye appointment until six weeks from now (MRI on the 21st; appointment with the rheumatologist on July 9th).

Thanks, as always, for listening, for your support, and for your prayers. I know God sees all that is happening (the current theme for my small group study on Sunday mornings---"God sees"), and I know He walks with us through all of this. Sometimes we feel that, and sometimes we don't and walk by faith instead, during those times. Sometimes He uses some of YOU to help us know (in big and small ways) how much He sees and cares. Thanks!

Saturday, May 01, 2010

Latest Update

Anna had a steroid injection into her left knee on Friday. Her rheumatologist told her that after that injection, she could choose whether she wanted the other knee done, as well. (There's some swelling there, too, although not as much as the left knee.) She was calm and somewhat interested (except that she turned her head away when the long needle was going in), but she declined the offer for an injection to the right knee for now. If the arthritis continues to be active in that knee for the next few months (we go back in July), she'll need to have it done, though. (She said the injection procedure wasn't bad--she just didn't want both knees done at one time, especially since she had a choice in the matter.) We're also scheduling another MRI in June, to check on the TMJs.

On another note, Hershey Med has stopped participating with the supplemental health insurance we receive through the state for Anna (available to her since she has a chronic illness). The state offers choices of other providers, but our primary care physician currently does not participate with any of those. (They're working on it and have all of the paperwork in--just waiting for the contract to be approved.) There is a level of frustration, and this is one reason why I really don't like health insurance which is overseen by government. According to the people I spoke with, if we wanted to choose a different provider which Hershey Med participates with, we would need to choose a different PCP for Anna (I'm NOT going to do that---our PCP has been our doctor for 24+ years and has known Anna since she was a baby). At least it's just supplemental insurance, and we really can cover the co-pays at the doctor's office and some of the other charges until Anna reaches the deductible. The main reason we applied for the supplemental insurance through the state was because of the massive co-pays on the medications, and as far as I know, our pharmacies still participate with the current supplemental provider. We'll be fine, and it will all work out, but I happened to wonder how people feel if that's their primary healthcare. Maybe other people don't build up our level of loyalty to our PCP---maybe it's easy for them to switch doctors. I don't know. I'll stop rambling about it, now.

We've had a very long and busy week in many ways. I'm hoping that life will settle down a bit. We have six weeks until Anna's next ophthalmologist appointment. Maybe we can focus on some other things besides uveitis and arthritis for a little bit (we have many other things to focus on---some track meets and Invitationals, concerts, helping Abby move from her freshman dorm to her summer dorm, etc., planning some vacation days, and maybe making more progress in our kitchen and dining room. If I don't update this blog for another six weeks, you'll know that I'm busy with other aspects of life and that we've been able to put arthritis and uveitis on the back burner for just a little bit. :o)

Wednesday, April 28, 2010

Better Than I Anticipated . . . .

At Anna's eye appointment today, I wasn't really sure what to expect, so 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").

I had to smile today, because we've had ophthalmologist appointments with such frequency in the last year, and many of the ophthalmologist's staff is new within the past year---they've trained on Anna (she's a good patient to train on---she knows the ropes and is always calm). It's been six weeks since we'd been there (and that was lengthy--we'd been going every 2-4 weeks). We walked in the office, and they said, "Anna's here! It's been awhile, and we were wondering when you'd be in again!"

Took her for a blood test today, as well. I talked about the change in labs a few blog posts ago. We continue to be pleased with the change. Anna is maturing, and now takes labs in stride. No Emla cream, no lounge chair, no little group of phlebotomists who treat Anna like family, no lengthy registration process--just in and out at the labs at Hershey Med. For all of you moms who are struggling with your little ones and labs, it DOES get better.

Anna has a bassoon solo tomorrow night in a recital at the middle school. :o) Then on Friday we'll find out the game plan for her flaring knee joint.

Monday, April 26, 2010

Then Again, Maybe Not . . . . .

After a week of "normal" life, the stiffness in the knee returned this morning (no pain, though). I'm wondering if there is any correlation between when she receives the Humira injection. She's due for another Humira injection on Tuesday. Last Friday, when she had stiffness and pain, it was about time for a shot of Humira. I do not have enough experience and/or knowledge to figure that all out. Anna took an Advil this morning. She hasn't been taking them regularly. We'll see what the doctor says on Friday. Just wanted to write it down somewhere to keep track of what's going on.

Friday, April 23, 2010

Back to Normal Life . . . . .

Anna's knees look normal now, and she's already back to living a "normal" 12-year-old life. Was last week's sudden swelling and inflammation a freaky thing or will it become a lingering problem? I can't really say at this point. We have an appointment with the rheumatologist on Friday. If the knee looks like it can and should be injected with steroids, he'll do that at next week's appointment.

As the doctor and I were working out a time for this appointment via e-mail, I would update Anna with options. This past Wednesday was the first option, but Anna had "Career Day" at school yesterday and needed to be mobile (bus rides, field trip, etc.). Then next Thursday was an option, but Anna has a recital that night. When I was telling Anna this, she shrugged and shook her head and said, "We're just too busy . . . " It sounded like she meant, "We're just too busy for any type of appointment or joint injection."---as if this were one of the many social events or school activities that we would need to regretfully decline because other events or activities have higher priority.

By next week, we'll also know how Anna's eyes are doing, since she has an appointment with the ophthalmologist on Wednesday.

That's the update for now . . . . more later.

Sunday, April 18, 2010

How Can This Be?

I have asked myself the above question several times since October--when Anna started on the Humira (in my mind, a very powerful medication) and we saw very little improvement in her eyes. The inflammation in Anna's eyes settled down to a "trace" with the help of the steroid eye drops about two months ago, and that was a relief. But then, within the past month, Anna has been talking about some joint issues, telling me about some stiffness (more than she's used to). Now her knee has flared, with swelling and pain (enough to bring tears). She hasn't had knee swelling or pain since she was a baby. Again, in my mind, I'm thinking, "How can this be?" Not only is she on Humira, but also on Methotrexate. For now, we're adding ibuprofen twice daily. Her list of medications has grown significantly in the past six months--we've been adding medications, not tapering off or taking anything away. Her eyes have always been the main issue; her joints have been pretty well controlled (well, except for that jaw involvement last year).

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.

Monday, March 15, 2010

Better News . . . . Sustained Improvement!

I've been meaning to give an update for the past month. Anna had an eye appointment about four weeks ago, and we were so pleased that the changes we had made resulted in improvement! The added Pred Forte drops and Methotrexate (with the accompanying Leucovorin) has indeed been effective in decreasing the eye inflammation down to a trace of cells in each eye. Four weeks ago, at that appointment, the doctor was happy, and I was happy, even though I'm a true realist and know that we're making progress in a battle, but the war may be ongoing for some time. For the past four weeks, we were able to decrease the eye drops from three per day to one a day.

Anna's next eye appointment was this afternoon. Another day to be so very thankful! 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.

Since Anna has been back on Methotrexate for a few months, she needs frequent labs once again. Our regular lab (a few blocks away from our home) closed at the end of the 2009 (the building had been sold, and the new owners had other plans for that space). We loved that lab, and the people there had been a gift from God to us when Anna first started Methotrexate and was so very scared of needles. But she is now more a young lady than a child.

Since we had to make a change in labs, we made major changes. We decided to have them done 20 miles away at the Hershey Medical Center (since we're in the area so often for eye exams anyway), and she decided to try them without the Emla cream. Also, at the old lab, the lovely people were so good about allowing Anna to use the blood donor lounge chairs and always gave her a snack, and basically welcomed her like family (when my husband went in to give blood once, they looked at his paperwork and said, "Oh! Are you Anna's dad?!"). All of those special concessions and arrangements were part of our plan to get Anna comfortable with labs since she had to have them every 6-8 weeks and started at an age when she was rather needle-phobic. Now Anna has grown up, and she said it was no problem just to sit in the regular old lab chair--no need for the comfy lounge chair. So today while in Hershey, we found the building we needed, found the lab, and were in and out in five minutes! Since Hershey Med has Anna in the system, there was no lengthy registration process (like at the old hometown lab). While Anna may not get to know these people like family (Hershey Med is a great place with great people on staff, but it's so large with so many patients coming and going that it's not usually a homey/family feel), this is still a good change.

The photos above are from Anna's experience with her school's Quiz Bowl team. She's been working and practicing hard, and was able to participate as one of her team's alternates. Her team did so well at the regional competition, only losing to the first and second place teams. Such an intense but fun day! (When she wasn't participating in a particular quiz session, she sat with her brother, Joel to watch her teammates.)

Saturday, February 13, 2010

Thinking Ahead . . . .

Since December, I think we've been to Hershey at least seven times (and only to Chocolate World once!). We go back again next week. I'm glad it's not all that far away. Last week, we saw the ophthalmologist and heard that there is no improvement in the inflammation in Anna's eyes. So we added steroid eye drops for two weeks. We also added 10 mg. of oral Methotrexate (and the Leucovorin that comes along with prescribing Methotrexate).

Yesterday, we had an appointment with the pediatric rheumatologist and discussed a game plan for the future. Reasoning: while the steroid eye drops will probably bring some improvement, the inflammation will most likely return once we stop the eye drops. Since Anna is not a "full-sized person," there's real hesitation and nervousness in prescribing an adult-sized dose of Humira (once a week instead of the current every ten days).

Some key things to seriously consider:
  • Is Anna metabolizing Humira quickly? Children often metabolize medications more quickly than adults. To know the answer to this question, we would need to know how to evaluate the levels of Humira in her body. The ped. rheumatologist is going to see if there's a way to measure this with labs. This knowledge would reveal whether it's safe to prescribe a more frequent dose of Humira.
  • Information regarding Humira in the last six months has been positive, while serious concerns continue with Remicade, so much so that Anna's rheumatologist is hesitant to prescribe Remicade for any of his patients (I hesitate to share this, because I know several friends whose children are currently being treated with Remicade---but this is what I was hearing.) For Anna, the choice of Humira has been okay so far. (Even though she did get quite a localized rash again after her last shot.)
  • There are two relatively new medications/therapies which may be considered for Anna should we need something other than Humira. The one is Orencia (infusion). I can't recall the name of the other at this time (I'm getting older, and my mind can only retain so many details in one day!---next time maybe I'll remember to write it down). I do know that it does not suppress the immune system. But the explanation of how it works made it sound like it would be very expensive.
  • 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."
So that's about it for an update. Just a lot of information to sort through in my brain and think about. My own personal feelings are to go with the steroid eye drops if they will work. Anna is twelve---less than six years until she's eighteen. Sometimes in the back of my mind I wonder if later in life, we'll find that taking Humira affected her body in some way. There's a lot of history and data for Methotrexate, so I don't worry so much about that.

But in the end, as I think through all of these things, knowing that we've been praying for wisdom and direction all along the way, taking in as much information as our brains can handle and then going with what we "feel in our bones" to be right and coming to peace with those decisions, I have to rest in the knowledge that we are doing the best we know how. As I say often, my children belong to Jesus before they belong to me. Every day is a gift, and the future is not to be faced with fear. (Typing this helps me to remember this truth.) God is ever present through all of this, and we can trust Him without reservation to keep His promises, including the one that says "All things work together for good to those who love Him and are called according to His purpose." I have seen this promise fulfilled in some of the most devastating tragedies and sorrows in life (even just in this past week).

Tuesday, January 19, 2010

Rash around the Humira Injection Site

I did want to share a little experience that we had over the weekend. Anna had received her latest Humira injection this past Wednesday. On Friday evening, she mentioned that the area of her leg (where I had given the injection) was itchy. I took a look at it, and there was a rash around the area, and it was slightly warm to the touch. I got out the little booklet about Humira, where it said that this occurrence could indeed happen. It should go away in a few days, but if it did not, we should call the doctor immediately. Well, I did e-mail the doctor's office (just for a "heads up." I figured that it lasted through the weekend, I would call the on-call person.) However, good news! By Saturday morning, the itching had subsided and everything was okay.

I did hear back from the doctor's office. They suggested that we could put some Hydrocortizone cream or Benedryll cream on the area after the injection. Also, the main worry would be if the itching and redness developed into an infection (which it did not).

I wanted to share this for anyone else who may be taking Humira injections---just in case you experience something similar. All's well that ends well!

With Privilege Comes Responsibility

I've had many thoughts this past week, and today when I was mentally trying to summarize them all, I came up with this title (not original, but very true and very quotable).

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. I must admit, though, that my expectations were too high. Anna had received her last Humira injection less than 24 hours before the appointment. In my mind (which doesn't totally understand exactly how this medication works), I was thinking that the injection of medication should have "zapped" out a whole lot of inflammation! Oh, well . . . as friends have reminded me, this battle with juvenile arthritis and uveitis is a marathon, not a sprint (now I do understand that! My son is a long-distance runner, but not a sprinter).

As I was mulling over these events, the earthquake in Haiti occurred. And then as I was thinking through Anna's disease(s) and medications, I was thinking of just how privileged we are, and I've been wondering how can I even begin to complain about any of that. I wonder just how many little children in Haiti may have arthritis or uveitis issues, and are they even diagnosed, and do they even get any help or have any hope? And even if they did . . . Anna's Humira is delivered right to our doorstep, and the people at the MedMark Pharmacy are always so helpful and bend over backwards to ensure that we receive what we need, when we need it. I also think of friends who have to travel far and wide so that their children can receive care from reputable pediatric rheumatologists and ophthalmologists. Anna's specialists are just 20 miles away, and we are within several hours drive of a myriad of specialists should we ever need them.

Our blessings are great. Anna remains symptom-free, so she has no pain, even with past active arthritis in her TMJs. She really lives a relatively normal 12-year-old life. We have really good insurance, and our state offers supplemental health care for children with chronic illnesses.

Even though our family would not be considered "privileged" or wealthy in our own community, I know there are people around the world who would think we are very privileged indeed. That thought is truly humbling. So what does that mean as far as responsibilities? I can't answer that yet. I'll be praying about that and really listen. For right now, it means sharing Anna's story so that others in similar situations might be encouraged and find hope for the future instead of despair.