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 PostPoslano: 09-12-2008 16:21  Citiraj (i odgovori)  
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Jacob, 11 godina
uveitis na oba oka od 01 2008
JIA od 02/2004


http://jacobsuveitisandjrajourney.blogspot.com/

ANA pozitivan, oba koljena, prsti na ruci, zglob na ruci. Bio u potpunoj remisiji bez ikakvih ljekova pune 3 godine. A onda
01/2008 ponovno jako pogoršanje, ovaj put i Uveitis.

Early in Jacob's diagnosis he was treated with Naproxyn and steroid injections in his knees for the swelling. He was able to wean off of the anti-inflammatory not too long after having the injections. He went into a complete remission until January 2008 when his knee out of the blue became very swollen and hot. We went back to the pediatric rheumatologist and he was immediately place back on anti inflammatories. Soon after seeing the rheumatologist we went to see the opthamologist. Uveitis was discovered in both eyes. After doing some research on uveitis I decided that I would take Jacob to Cambridge, MA and see Dr. Foster for his uveitis care. Since then Jacob has had a knee synovectomy and has moved onto more powerful drugs that help to control his immune system from attacking his own joints. He is currently taking Methotrexate (a chemotherapy), and Humira. These two meds working together has put his joints and eyes into a remission. We still continue to see Dr. Foster every six weeks to be sure there is no problems with his eyes. He has the very beginnings of cataracts from his uveitis but considering the course this disease takes for a lot of children we are very lucky.


January 23rd... , 2008
cells present that would diagnose him as having uveitis. Jake was placed on Pred-forte eye drops 3x a day for 2 weeks then he needed to be checked.

February 6th... 2008 The doctor had great news today, he looked into Jacob's big beautiful eyes and said "No MORE CELLS". Wow I thought that wasn't as bad as I had read. He said we could start to taper the drops. We were instructed to go from 3x to 2x a day.

February 8th.. 2008 Jacob has conjunctivitis, and bad! Both of his eyes were shut! Out of school today. I called the opthamologist back and he wanted to see him. I brought him in and he said we should up the drops back to 3x a day because the conjunctivitis can sometimes affect the uveitis. Drops down to 2 a day, for a day, back up to three already!

February 15th... 2008[/b
dr. Foster The left eye presented with 2+ cells and the right 1+. The rating scale for uveitis goes from 1-4. Jacob's eye were considered a moderate case. Dr. Foster said that we had to be extremely aggressive to fight this. I wondered how could he have this when we were just told a week ago all looked well! Dr. Foster immediately increased the pred-forte drops to SIX times a day! And said he needed to go onto a drug called Methotrexate.

February 26th, 2008
Dr. Foster said that Jake's eye's were clear of all cells today! His eye pressures were up to 24 in both eyes today. I guess anything between 10 and 20 is considered normal. The doctor said his eyes could handle this because he is young. It does need to be watched closely though. The new plan is going to be maintaining the drops at 6x a day through next week. Then tapering down a drop each week. His vision actually improved to 20/25 today. Which I think is normal for him.

Friday, April 4, 2008
Jacob's eye's were clear! There were no cells present at all! His right eye pressure was at 13 the left they could not get. The reading was normal. So the next step is to stop the drops and wait. He is to return to see the doctor in 6-8 weeks.

Wednesday, June 4, 2008
Jacob has been off the steroid drops for the pst 8 weeks. I was very worried today about going. This appointment was going to be huge, to see if the MTX has kept his eyes clear. They were not. Both eyes were involved again. They
both has a cell count of 1+. The eyes are in a flare. The MTX isn't doing what it is supposed to be doing.
Dr Foster wants us to see the rheumatologist next week to dicuss what is next. He suggested putting him on an additional med, another immune suppressor, or upping the MTX which means he will move on to an injection.

Wednesday, June 18, 2008
Humira treatment begins

Wednesday, July 16, 2008
His eyes are completely clear today! There is no active uveitis present! The Humira is working beautifully. Dr Foster wants to keep Jacob on the current mix of Humira and Methotrexate for the next two years, as long as the eyes stay clear. We return in 8 weeks for the followup.

Wednesday, October 1, 2008
The Humira is doing it's job! Jacob's eyes remain clear today! The pressure readings today were 13 in his right eye, 15 in his left eye. Well within normal range. I asked the fellow today why it is so important to check the reading when he is off all steroid drops and his eyes are clear. He said that scarring can occur in the eyes from the damage the uveitis could of done initially. So his eyes will still need to be checked for glaucoma each visit.

Thursday, December 4, 2008
His eyes remain clear! Dr. Foster said that Jacob is a success case. His eyes are free of cataracts and no glaucoma present (he was able to do the pressure test and the numbers were very low). The Humira, along with the methotrexate, are still doing the job! So we remain on the 8 week follow-up.

Wednesday, January 28, 2009
Jacob's eyes still remain quiet. It is six months of quiet. His eye pressures were 16 today in both eyes. Well within normal range! Jacob did great with the pressure test. He is finally comfortable with the procedure.

Wednesday, April 1, 2009
The cataract is in Jacob's left eye. The treatment plan for now is going to watch it. We are going to return in six weeks for a follow-up. His eyes still remain free of "cells".

Friday, May 8, 2009
Jacob's eye's continue to do well. There is no sign of inflammation. His cataract remains stable. The only change this visit is that his eye pressure in his left eye is 20. His right eye continues to be around 17.

Wednesday, June 24, 2009
Jacob's eyes still remain inflammation free. Jacob has been on the combination of 17.5 mgs, Methotrexate, (chemotherapy), and 20 mgs Humira, which is a bi-weekly injection. This combination has kept him cell free for an entire year now!!His vision remains stable and his eye pressures are within a normal range. The pressure readings today were 15 and 16. Actually down from 24, last visit!! His cataract, which is still very small, is stable.

Wednesday, September 16, 2009
There were no cells present!!! He does have traces of cataracts both eyes now though. His pressures today were 14 left eye and 19 on the right.


http://www.drweil.com/.
Wednesday, June 30, 2010
2 year mark for Uveitis remission
Jacob had his 6 week follow-up with Dr. Foster today. This visit marked the 2 year medicated remission for Jacob's uveitis. His eyes are completely clear!Two years ago, Jacob was in the midst of a uveitis flare-up that was uncontrolled. He had been treated initially with NSAIDS that produced no results. He then moved onto Methotrexate, a chemotherapy drug. This produced no results either. During the Methotrexate and NSAID therapy he was also on steroid drops. Jacob was unable to achieve a steroid free remission with this medication combo. His eyes continued to flare as we tried to wean the drops. The decision was made to add to the Methotrexate another drug called Humira. Humira is a drug that is classified as a TNF antagonist. This stands for Tumor Necrosis Factor. Once the Humira was added Jacob went into remission. We were told 2 years ago, that once he achieved remission that he would continue to be on this combination for a full 2 years before weaning would be considered. I remember thinking 2 years was so long!! Now here we are! Full 2 years off steroids. As far as his eyes are concerned we have the go ahead to wean on the meds. This needs to be determined by the rheumatologist though. We are scheduled to see her on July 19th. Jacob's joints have been doing very well except for the one swollen toe. One toe. So now we wait for the appointment in July to see what she says. We have graduated to seeing the eye doctor every eight weeks instead of every six.

Wednesday, October 27, 2010Eye check. Humira every 2 weeks, Methotrexate every 2 weeks. Jacob's eyes are clear, cell free! They have been clear now for 2 years, 4 months. (well one little trace cell count a few months back, but nothing to lose sleep over).Cataracts have not grown.

Thursday, November 4, 2010
All of his joints are doing well. Three months ago, we had decreased his methotrexate by doing it every other week instead of weekly. Jacob is currently taking 17.5 mg, which is the equivelant of 7 pills. Starting this Sunday we are reducing the dose by 1 pill. Which is 2.5mgs. He should be completely off, if all stays well, by the end of January. He is going to continue on the Humira. Which he takes every other week. We are to watch for any flaring as the med is decreased and return in 3 months.

Wednesday, January 5, 2011
3 years since uveitis diagnosis

He dilated Jacob's eyes today to be able to see in the back of his eyes. He did this because Jacob said that he has been seeing floaters. All was clear in the back of his eyes as well as the front. His pressures were good today also. The right eye was 21, the left 17. His vision was 20/25 both eyes.

Wednesday, May 11, 2011
When the tech checked his vision in the beginning of the appointment, she came up with 20/40. His vision corrected is usually 20/25. She said that his cataract has grown some in his left eye. It was graded at a trace initially and it is
now at 1+ to 2+in his left eye. His right eye is just a trace. Then we went back into the exam room and Jacob was retested with their lens and then with his glasses. He read at 20/25 again. The screen in the first room was a mirror where he had to read. The second room was a computer. The tech said the glare could of affected him in the first room.

The only other thing today is that his pressure was up a little again in his left eye. He was at 21. The right eye was at 13.
We also just got the refill on the Humira. The rheumatologist upped his dose from 20mg every other week to 40mg to keep up with his growth. He has been having some breakthough joint issues so hopefully this will stop that.

Saturday, July 16, 2011
I am very happy to report his eyes are still clear. They have been clear for 3 years now! (he has a few trace cells once in the past year) His pressure was great and there was no change in his cataracts! We do not have to return for 3 months!

_________________
Anita Moorjani "Ponovno rodjena"


Zadnja izmjena: kate; 22-07-2009 21:17; ukupno mijenjano 11 put/a.

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Claire, 4 godine
UVEITIS NA OBA OKA od 07/2008


http://www.kidsgetarthritis2.blogspot.com/

ANA pozitivna, oba oka
ARTRITIS: July 2008, at the tender age of 20 months, Claire started limping.
UVEITIS: July 2009

Komplikacije: Katarakta. Sinehije. Pojasna keratopatija. Dobila ambliopiju od atropina

Bila 2 mjeseca na maxidexu prije ukidanja, pa nastavila s pre[dnisolone.

Current Medications:
Naprosyn 4 mls twice daily
Iron 5.0 mls daily
Methotrexate 10 mgs s/c weekly
Folic Acid 5.0 mls 3x/week

uveitis na oba oka od 8.7.2009
both of Claire's eyes would not fully dilate. The uveitis has caused stickiness/adhesions. Left for just two more days she would have developed glaucoma)

Monday, July 13, 2009
Today was a balance of both. Dr. A (ophthalmologist) said that Claire's eyes show signs of improvement. There is still inflammation present but less than there was on Thursday. Her right pupil is still only partially dilated but he believes it is open enough to prevent glaucoma. With decreasing inflammation and continuing prednisilone and atropine it should gradually open fully. At least we hope

Monday, July 20, 2009
ophthalmology - The inflammation continues to decrease. We are to use the prednisilone three times a day and the atropine just once. The biggest news was getting Claire's prescription for glasses

Monday, August 17, 2009
1000 percent better than last time
Claire first uveitis flare is very close to being over. One eye is clear, the other is nearly clear. Her troublesome right pupil looks much better. The current plan is to decrease prednisilone to twice a day for two weeks, then once a day for two weeks. Atropine remains the same.

Tuesday, September 8, 2009 ( 2 mjeseca nakon)
Good news and could-be-better news
Claire had an appointment with Dr. A this morning. Good news first - both of her eyes are "quiet". This means no cells (inflammation). Unfortunately, her right pupil is still not opening. Surgery may be a possibility in the future. Dr. A will not do it "just because" or for cosmetic reasons, he will wait to see if it becomes a problem.
As well, Claire's vision is not as strong in her right eye as it is in her left eye. This could be from the atropine we use in her right eye. If it's not, we'll have to start patching

Thursday, September 17, 2009
Today is Claire's third day being off all eye drops

Wednesday, September 23, 2009
Yesterday Claire's right eye was a little pink. Actually, Dr. J noticed it on Monday
Dr. A could not get a red eye reflection in Claire's right eye. He thought she may have developed a cataract. It was a scary possibility. He decided to dilate that eye which made for a long wait. In the end, it was not a cataract and her eyes are free from cells. Claire vision is poor in her right eye. She could not even read the biggest "letter" in the pre-screening room. With her right eye she could instantly match the shapes right down to the smallest. The solution for this is no fun. Patching.

Friday, October 16, 2009 (14 tjedana nakon početka)
A. Claire's eyes are still clear from inflammation and even better, the synechia is starting to break. Dr. A is convinced that the increased dose of methotrexate is the reason for this.
The vision in Claire's weak eye has not improved. We discussed Claire's difficulty with patching and decided on a new approach. The atropine we used in the summer in both eyes, then just her right eye, will now be used in her left eye. This causes her vision in that eye to blur a little, forcing the weak eye to do more work. He said to expect Claire to be irritable for about a week. He'll check her again in three weeks.

Tuesday, December 15, 2009
As for her eyes -well - she has a cloudy cornea. And, her vision has not improved. The worst news came when Dr. A said the most improvement usually happens in the first several months. If we don't see a change by May/June, she'll likely not regain her sight. It is currently around 20/400.

Monday, January 25, 2010
The fantastic news is that her right eye is now 20/200, meaning she could match the two largest objects for the very first time. Her stronger eye is still holding fine at about 20/25. The result of this improvement is not what I expected - double the patching! The only worrisome news was the term mild cataract was mentioned again. It will continue to be monitored

Wednesday, March 24, 2010
...band keratopathy. So now Claire's eye diseases/conditions include

uveitis
amblyopia
a cataract
synechea
band keratopathy

Wednesday, April 21, 2010
A lens extraction and IOL implant will be scheduled within the month. Dr. A will also fix her 'sticky' pupil. There is no turning back. A cloudy lens cannot be cured, only removed. There is no hope of it getting better. There is no hope of Claire ever, not even 50 years from now, being discharged as an opthalmology patient.

Monday, May 31, 2010 1. Operacija
Well, the news more than made my day, it made my LIFE! Once he opened up the pupil (called posterior synechiae release) he was able to see that the lens was clear! NO cataract! There was some pigementation that he was able to remove. He also removed some of the calcium build-up (band keratopathy).

Thursday, June 3, 2010
One week after surgery, with appointments on days 1 & 4, Claire's eye is looking good. She has one blue iris and one hazel iris but that won't last forever :-)

Wednesday, June 30, 2010 A lesson in patience STRPLJEN SPAŠEN
Claire had another great eye appointment yesterday. The atropine has worn off and her pupils are of equal size for the first time in over a year! She opened her right eye while the left was patched for the first time post-surgery. It tested somewhere around 20/400. Now that recovery is complete we wait, again, for the re-approval of pediatric laser eye surgeries.

Thursday, July 22, 2010
vision in Claire’s right eye is improving. Corneal swelling, which I wasn’t aware existed, is either decreasing or gone. What’s next? Claire needs to have the calcium removed from her cornea. How and when is still to be determined. We also know that she will need treatment for amblyopia. If everything goes as planned, and the uveitis stays quiet, it could be a very good year!

Friday, October 29, 2010 2. Operacija
They were able to remove all the calcium. excellent! Just what I was hoping to hear! Then, Claire put on her sunglasses, covered her head with two blankets, and we were free!

Wednesday, November 24, 2010
First came the GI clinic. It’s difficult to summarize a 90 minute appointment in one paragraph. There are valid reasons to suspect a GI disease such as Crohn‘s.
bloodwork to repeat thyroid function and celiac screen (5% false negative), check for vitamin D deficiency, and an x-ray to determine bone age. If these tests come back ok Claire’s GI file will be closed. If she begins to show GI symptoms or starts to fall off her growth curve we’ll be back.
Claire’s eyes were clear. With decreased vision and a hint of pink I was preparing myself for a flare. We’ll make every effort to continue patching but with the broken elbow I don’t see getting in more than one hour a day. Hopefully we’ll see improvement next month.

http://kidsgetarthritis2.blogspot.com/s ... -results=7

Photo taken June 17th 2009. No red eye reflection in the right eye. Uneven pupils. I was looking out for this, I really was, but photoshop removes red eye while uploading pictures, so I didn't see it until I looked at the original on my camera a few days ago.

Friday, December 17, 2010
Well, her eye was fine. But her vision was not

Tuesday, January 18, 2011
20/25 in the left eye - a personal best!
20/300 in the right eye - progress!

She patched for 3.5 hours today...it's working!

Thursday, February 10, 2011
GOOD news and GOOD people
BCVA today in Claire's right eye was......drumroll please.....
20/50Jaw-dropping improvement. Oh, how we needed this news. She will regain her vision. She has regained most of it.

Wednesday, February 23, 2011
drops or no drops?
When Claire last saw Dr. A he mentioned she didn't need to be on fluorometholone drops anymore. He then suggested to keep using it once a day because Claire's appointment with corneal specialist Dr. H was a short time away.

Friday, March 11, 2011
Claire could match all the letters on the 20/50 lines and a couple on the 20/40 line, thus her vision in her right eye is likely somewhere in between. Her orthoptist said not to be discouraged because a plateau is quite common after a big jump.
Dr. A took a quick look and said her eyes are still clear and no further calcium has formed. For the next two months we will continue to patch 2-4 hours a day.
By June, Dr. A expects that her vision will be back to 20/20 or stuck at 20/50. Her next appointment with Dr. A is a whole two months away!

Monday, April 25, 2011
One step back
Dr. H did not like the look of Claire's cornea. Because he does not lower the slit lamp light intensity like they do at the children's hospital, it was difficult to convince Claire to open her eye.Back on FML drops 4 times a day, recheck in a week.
I am both surprised and disappointed.

Thursday, June 2, 2011
Claire's cornea appointment was yesterday. The ophthalmic *** told me Claire's being seen for a cornea scar. Hmm. I didn't know that. Dr. H was slightly concerned about the stye and added Tobradex 4 times a day of top of FML 3 times a day. Looks like I'll be back to setting eye drop alarms.

Wednesday, July 6, 2011
I believe Claire is living her miracle right now. She has no pain, few medications, decent eyesight (up to 20/50 in the right eye for Dr. A yesterday, 20/20 in the left!) a good appetite, and limitless energy.

Thursday, June 9, 2011
Methotrexate is lowered to 5 mg from 10 mg.

_________________
Anita Moorjani "Ponovno rodjena"


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Charlotte, 5 god
JIA & uveitis od 10/2007


http://reece99.blogspot.com/

At the age of two, our youngest & 3rd daughter, Charlotte, started limping inconsistently & woke up one morning with a swollen knee. She was diagnosed with Pauci-Juvenile Rheumatoid Arthritis (less than 4 joints) in October 2007. One month later, both knees were drained & given cortisone injections. Then a month after that, a wrist & an ankle.
It all came on at once & it came pretty fast. Including arthritis going to the eyes called Uveitis. And its the uveitis that's been her biggest battle.

Age 5
Current Medications:
1. Methotrexate .5 mls
2. Remicade (started at every 4 weeks for one year, 5 weeks (4 sessions), 6 weeks (4 sessions).

In April, the following plan was created:
1a. stretch Remicade to every 8 weeks (4 sessions)
1b. Then lower her Methotrexate dose by .10 mls (.4mls) - moving forward it will now be .4 mls

2a. stretch Remicade to every 10 weeks (4 sessions) (takes us into July 21, 2011)
2b. THEN lower her Methotrexate dose by .10 mls (.3 mls)

3a. stretch Remicade to every 12 weeks (4 sessions)
3b. .3 mls of mtx - then we will be done....

DROP ALL TOGETHER
June 21, 2012 (last remicade session at 12 weeks)

Thursday, July 14, 2011
Charlotte has been decreasing her steroid eye drops since the cells are gone & tightening the regime of Remicade.
Now this week she is down to one drop a day. And we start the optimism of looking ahead since her eyes are cell free again (cells popped up when we stretched her Remicade to 10 weeks). She is currently doing 6 sessions of Remicade every 4 weeks to get those eyes back on track (that's once a month for 1/2 a year!) & now she will start to stretch again, 6 weeks, 8 weeks, 10, 12


Wednesday, July 20, 2011
As of today's eye appt, she's off of the drops. However, today's eye appt showed 1-2 cells in each eye hanging out.
She could live a lifetime with 1-2 cells just hanging out. Eye dr's dont fret over 1-2 cells. So moving forward with the plan...
She has two more sessions of Remicade at 4 weeks till she moves on to 6 weeks. If these few cells can just hang out & not invite friends & she can move forward with stretching out the remicade, it will be a win. One day at a time. She's off the drops! Yay :)

_________________
Anita Moorjani "Ponovno rodjena"


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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.com

Ovo 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 supplements


October 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.

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Jackson

A few months before Jackson's 3rd birthday he was diagnoised with Pauciarticular onset juvenile rheumatoid arthritis with chronic uveitis with synechia of left eye.

http://jacksonmpohl.blogspot.com/search ... results=20

remicade infusion

Thursday, May 6, 2010
Jackson's problems started out with a droppy left eyelid (medically called ptosis of the eye).
They all agreed that his nerve was inflammed but the problem was actually coming from his pupil and iris. They said his iris is stuck to his lens and his pupil is stuck to his iris, weird! They had put quite a few eye drops in throughout the morning to dialate his pupils and the left pupil was not circular, it was jagged. They saw a bunch of white blood cells pooled in his eyes which led them to the diagnois of Iritis, which is inflammation of the iris.

Sunday, May 30, 2010
only saw 2 cells in his left eye which is less than it was 3 weeks ago. But because the cells aren't completely gone we have to continue with the steriod drops. We can hopefully be done with this drop after our next appointment in 6 weeks because prolonged use can actually cause cataract

Friday, August 20, 2010.
Jackson had a appointment with Dr. Bothun on Wednesday. It didn't go well at all, there is no change in the cells in his eye. Its been 6 weeks since we increased the pred forte eye drops and there is still the same amount of cells. He did increase the amount of methotreaxte injection and said if there are still cells in 4 weeks we will be adding another med. I hope we can avoid that since Jackson is currently on pred forte 4x a day, naproxen 2x a day, folic acid 1x day, and methotreaxte (chemotherapy) injections 1x a week

Wednesday, November 17, 2010
Good news is his eyes are CLEAR, no cells. Bad news is the pressure is high in his eyes which puts him at higher risk for glaucoma.


Thursday, December 16, 2010
The pressure was coming down but the cells were back in the left eye! So I guess coming off the pred forte and going onto FMX was not a good choice. However Dr. Bothun did not want to go back on pred forte because he thinks that is what was making the pressure go up in his eyes

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Jordan, 6.5 godina

Boluje od 12/2004
mama ima: lupus, APS and a few other autoimmune diseases.

http://lifewiththepeanutandbub.blogspot ... world.html


Monday, August 25, 2008
It doesn't matter how long or how often the drops are used, the steroid drops cause cataracts. Dr. Foster says that in 50% of patients at 850 drops a cataract begins. It doesn't matter if those 850 drops were used in 6 months or over many, many years of use. It will happen and there is nothing that can be done to prevent it So it looks like we can add cataracts to Jordan's list of issues. I have no idea how many drops we've used in the last 3+ years but it's been a lot. Hopefully she'll go into remission but her eyes are not responding to the Enbrel. I'm afraid we're going to have to move onto Remicade. I've read that most JRA kids with uveitis respond well to Remicade but it's an IV infusion done over a 2 hour period at the hospital


Saturday, June 20, 2009
Here we are 4 years later I know so much more about JRA. She's on weekly medications, sees her rheumatologist every 8 weeks and if we're lucky she only sees her eye Dr. every 3 months. Usually it's about every 6-8 weeks. Jordan had to have a joint injection and it was one of the worst things I've ever sat through. Usually an injection will last about 6 month but Jordan's only worked for 6 weeks. About 3 months after the injection, I noticed her other knee has started to swell. Her arthritis is spreading. She’s now on Humira and methotrexate injections.


Thursday, September 30, 2010

6 months after her JRA diagnosis her eyes joined it. We've had periods where she couldn't be inflammation free for more then a week or 2 then we added the biologic meds and she was doing OK. After about 6 months on Enbrel it stopped working and we went to Humira. She did great for a while, like over a year, and now her eyes are active again. Joints are too but I'm really worried about her eyes. There is talk about Remicade.

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Kathy Ruppenkamp (s foruma)

http://community.arthritis.org/forums/T ... 816-1.aspx

Posted Monday, March 29, 2010

My daughter (age 7, oligo) has had uveitis for 4.5 years. We have been able to keep it quies with MTX and steriod drops. We are down to steroid drops once every other day. We are keeping a close eye for cataracts and glaucoma as the are side effects for both the uveitis and the steroid drops. So far so good.

She receives just a small dose,10 mg 1 time a week. She was at 12.5 a few years ago, but had a bump in liver functions so we weaned a little. No more problems with that.

She has bilateral uveitis and it is completely silent. We would not have know that she had it without routine screening. She had frequent eye exams initially but we are done to every 6-8 weeks. Her flares are only caught by slit lamp exam. She has not had a flare for 14 months now and we are currently weaning drops again. Her last flare was after coming off the drops. [b]Before we got her under control she would flare every time we weaned her drops, about every 6 months. [/b]We have very conservative Dr. He is very slow to wean, but we are always in agreement with him. We have been able to keep her under control with drops the best we got was 1 drop a week. As soon as we discontinue she flares. We are currently on 1/day. With the H1N1 scare this past year we missed 2 dose of MTX and received Tamiflu. We didn't wean thru this. We are planning to continue the wean this next week.
We have been very lucky and she has responded well to therapy.
We have not had any nodules.

We chose not to have HLA testing yet. It is expensive and is not going to change treatment or diagnosis. If it will make a difference with treatments in the future we will have her tested. I have two cousins with SA that are HLA positive, so we have some thought that our daughter will be too.

Our daughter had several major illnesses in her 1 st year. She had RSV at 3 months and had 2 septic episodes with no definable cause (blood and urine negative). Looking back these were probably the start of the arthritis, even though there were no visible symptoms until she was 15 months old. We also found her nut allergy at 9 months of age.

She did have all her immunizations through age 12 months, and only non-live vaccines since diagnosis. I don't feel that these were the trigger and have been thankful that she received them. We have had chickenpox exposure, and mumps and whooping cough outbreaks in our community. She was lucky enough not to get sick with these. I feel here immune system was already overactive before receiving these.

I know the genetic component has played the biggest role for her. There are autoimmune diseases on both sides of the family.
Our daughter has been on steroid drops now for 5 years. There are no signs of cataracts yet. She has been on drops as often as 4 times a day and has been weaned to as far as 1 time every 2 weeks. The three times we have taken her off she has flared. I think our rating system is different. Our doctor counts cells seen by slit lamp exam. Her first flare was 7-8 cells. Her worst flare was 8-10 cells. Her last few were 3-4 cells. The flares were the worst in the first 2 1/2 year but have not been as frequent. She has not had a flare in the last year, but we decided not to wean from 1 drop a day, due to the H1N1 outbreaks in our area. We have an eye doctor appt this week and will start to wean.
She was started on 12.5 mg MTX, but had to wean to 10 mg when she had an elevation in her liver labs. These labs have been normal lately.
We talked about remicade when we had the spike in the LFT's and had had our 4 th flare. Things have equalized now so no plans to change.
I would change if that is what the rheumy and the ophtho want.
I have a really good repore with our drs and feel very comfortable with their suggestions

Posted Tuesday, April 13, 2010
We had our eye exam on Thursday and all is well. We are now giving drops every other day. Yeah starting to wean again. She started methotraxate at 2 1/2 years with initial flare. Her initial dose was 12.5 mg orally. She was changed to injectable (SQ) 1 year later after several flares. Her liver enzymes spiked shortly after this (they were also drawn 2 days after dose). We reduced the dose to 10 mg at that time. She was on SQ until September 2009. She had been without a flare for 9 months and chose to change this instead of weaning drops. Now6 months later we are weaning drops too

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Iz pisma Ellen Anninoj mami

Ellen said...
Hello - My daughter also has JRA (pauciarticular) and chronic uveitis. She is almost 10 years old and was diagnosed at age 2. I wanted to ask you if you tried Remicade. My daughter's most chronic condition has been eye inflammation, and Remicade has done wonders for her. We also used Pred Forte eye drops and methotrexate, but ultimately was not able to control the uveitis. After starting Remicade, we were eventually able to eliminate methotrexate completely. My daughter now only has a Remicade infusion every 10 weeks, and she has zero inflammation and joint flares. That is currently the only medication my daughter is taking, although getting an infusion is a day missed from school and a long day as well! I know every case is different, but the I wanted to suggest Remicade. My understanding is that it is the most effective biologic agent for treating JRA *** uveitis. I wish you the best of luck with your daughter. Thank you for your web site. It is so nice to connect with other families going through the same thing. Take Care.

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Kate,ko je ovo pisao anninoj mami?

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Anja,4g
poli/uveitis oba oka od 7.2008.
th-mtx injek.12,5mg,pronison 2mg/2.dan,folacin;remisija pod th vec 2g
th.za oci(uveitis stalno aktivan,skoro svaka 2mes.)-dexa kapi(konst.2g manje ili vise),uniclofen,tropicamid
ANA prvo +,pa dva puta -
Rf -


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Neka mama pod komentarima na njenom blogu.
evo
https://www.blogger.com/comment.g?blogI ... 8682270291

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Facebook grupa ljudi koji se godinama (čitaj cijeli život) bore s uveitisom
http://gl-es.facebook.com/topic.php?uid ... topic=3034

Mraonicus, ovo je pre-prestrašno. Ima li uopće nade za nas?

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Kate,jesi li pohvatala istorijat dece od onih mama sa foruma tj facebooka,ona Michelle Banic iz Kanade,njena mala ima 15-16g,operacije aktarakte i 2 glaukoma,i samo jedno oko zahvaceno..od malena boluje,ali nisam bas sve pohvatala..takodje ni ove druge mame...ako ensto ukapiras stavi ovde,radi preglednosti..moj engleski je ipak slabiji od tvog :D

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Anja,4g
poli/uveitis oba oka od 7.2008.
th-mtx injek.12,5mg,pronison 2mg/2.dan,folacin;remisija pod th vec 2g
th.za oci(uveitis stalno aktivan,skoro svaka 2mes.)-dexa kapi(konst.2g manje ili vise),uniclofen,tropicamid
ANA prvo +,pa dva puta -
Rf -


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Molim te nemoj citati ovaj uveitis formu,tu ima svakakvih,vidis da vecina njih ima intermedijalni i zadnji uveitis,a to su babe i zabe u poredjenju sa nama

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Anja,4g
poli/uveitis oba oka od 7.2008.
th-mtx injek.12,5mg,pronison 2mg/2.dan,folacin;remisija pod th vec 2g
th.za oci(uveitis stalno aktivan,skoro svaka 2mes.)-dexa kapi(konst.2g manje ili vise),uniclofen,tropicamid
ANA prvo +,pa dva puta -
Rf -


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Amanda 15 godina
mama Michelle

Her eyes were already quiet when she was put on Remicade and they've stayed quiet. She had cataract surgery when she was 4 (Feb. 29/00) and glaucoma surgery 8 weeks later (May 8/00). She had to have another glaucoma surgery in Nov 2008 because her pressure was too high. She's still on some drops - 7 per day and she pretty much has 0 cells. The drops are more for the pressure. Her eyes were quiet on mtx only; she was put on Remicade for joints but it could also help her eyes. Only left eye has been affected.Vidi više

http://amandaja.blogspot.com/search?upd ... results=28

Our 18-month old daughter, Amanda, was diagnosed with pauci-articular juvenile rheumatoid arthritis in February 1997 -a form of arthritis which affects fewer than 5 large joints (hips, knees, ankles, shoulders, elbows, wrists, jaw). One of the side effects of her type of arthritis is “eye arthritis” or uveitis. At her worst, she was getting up to 25 eye drops a day.

November 1998
We now enter what I think of as the scariest part of this disease – Amanda developed uveitis, which is essentially arthritis in the eye.The severity of uveitis is rated on a scale of 1 to 4 – 1 being fairly mild, 4 being serious. Amanda’s left eye flared to a 4 very quickly. She was started on a steroid drop to try to control the inflammation.The steroid drop was a powerful one and it made her pressure rise to the high 20’s (15 to 17 is normal). She was then put on glaucoma drops as well. Even with the addition of the glaucoma drops, the pressure in the eye wasn’t dropping. We then added an oral diuretic to try to drain the fluid from the eye that way.The flare wouldn’t calm down and the pressure wouldn’t come down.

We fought the battle for a couple of months before it was decided we needed to introduce a new weapon in our arsenal – methotrexate. Fortunately, after several weeks, the methotrexate started to take effect. It’s a powerful drug, only administered once a week, but it takes several weeks for it to build up in the system to get the full affects of it. We were able to decrease the number of drops she was on to 15/day – a little more manageable.

July 19 1999
Amanda’s eye battles hit an all-time low in July. We had a follow-up appointment with Dr. Levin, opthamologist at HSC. The news we got at that appointment was devastating. Amanda would have to have cataract surgery. Remember that she was on an extensive course of steroid drops to control the eye inflammation. We had the battle over pressures and it was something we were still struggling with. However, the other side effect is the drop can “feed” a cataract. Amanda had developed a small cataract towards the end of 1998. It was fairly small and hadn’t grown much but, all of a sudden, it had grown substantially in a short period of time. It was now pretty much obscuring the vision in her left eye. The only option we had was to have it taken out.

Dr. Levin kindly and patiently explained the procedure to us as well as any risks involved. We knew we were in the hands of a world-class physician. It wasn’t just the thought of the surgery that terrified me, it was the aftermath of it. To remove the cataract, they would take her lens out. Because of the uveitis, they wouldn’t put an implant in. So it means that she would be basically blind in that eye without some kind of correction – she could see colour and light but nothing with any clarity. She would have to be fitted with a contact lens and probably glasses as well. How in the hell do you put a contact lens into the eye of a 4 yr old!!

Amanda was at a critical age for vision development. The cataract was pretty much obscuring her vision in that eye. The longer we had to wait, the more her vision would deteriorate and we may not be able to restore it.

February 2000
Dr. Levin came in to see us to tell us it was all over and had gone well. Unfortunately, we still had a difficult road ahead of us. Amanda would need a steroid drop every hour, day and night, to combat the uveitis that can often flare when there is any kind of eye surgery. We also had to stay in Toronto for a couple more days so Dr. Levin could monitor the uveitis to ensure it wasn’t reaching a critical level. We thanked him and breathed a sigh of relief that at least the surgery was over.
We returned to HSC for a check. Dr. Levin confirmed that, as feared, her uveitis had flared substantially and that was the main cause of her light sensitivity. He said, over all, her eye looked good post-operatively.
We returned to HSC for a check. Dr. Levin confirmed that, as feared, her uveitis had flared substantially and that was the main cause of her light sensitivity. He said, over all, her eye looked good post-operatively.
He gave us the good news that the uveitis flare had calmed down substantially and she didn’t have to be admitted to the hospital.

May 2000

Well, the saying “if it’s not one thing, it’s another” had new meaning for us come May. While the cataract surgery was successful and the uveitis was well controlled, Amanda had developed a significant glaucoma problem – her pressures were in the high 30’s to low 40’s. Not good! So we were scheduled for glaucoma surgery eight weeks after the cataract surgery. The good news was that Dr. Levin expected this surgery to be much less traumatic to Amanda’s eye so he didn’t anticipate a uveitis flare. The bad news was that we would again have to administer an eye drop once every hour for the first 24 hours. Sigh!
Surgery day arrived and it all went very smoothly. The surgery was done in less than an hour and Dr. Levin was confident it would be successful. I’m not sure why but Amanda seemed to bounce back from this surgery far quicker than the cataract surgery. Within an hour of being brought into recovery, she was up and talking and ready to go! It was awesome to see her feeling so well with no light sensitivity. We had an appointment with Dr. Levin the next day and he gave us the all clear – the eye looked really good and there was no evidence of increased uveitis. He released us to the care of our local opthamologist and we could go home

March 2005
we had five years of peace! Amanda was in a drug-induced remission – her arthritis was under such good control, she had minimal pain and required minimal treatment. Hindsight is always 20/20 and it probably was for the best. We changed local opthamologists –He was willing to take Amanda off of her methotrexate. The uveitis was under such good control, and her joints appeared to be doing well too, he thought we could slowly wean her off of the meds and see how she tolerated it. We began the weaning process December 2003 and took it very slowly, decreasing her dosage by 2.5 mg (or 0.1 cc) every 12 weeks or so. She had her last dosage on March 18/05. Unfortunately, it wasn’t long after that where the joint problems reared their ugly head once again.

We had a regular check-up appointment with our local paediatrician in March and he couldn’t find any effusions (fluid and swelling in the joints) but Amanda was complaining of pain. Not long after that, we had an appointment with Amanda’s physio and she was able to feel significant fluid and swelling in her right elbow, left knee, and right ankle. Dr. Feldman was contacted and we were scheduled for another round of joint injections

May 2005 -

Dr. Feldman started us back on methotrexate and we had the set of joint injections. I would like to say it was a pleasant experience but, alas, I can’t say that!! It was Amanda’s first set of injections when she was older – she is now almost 10.

June 21/2007
Amanda has been approved for Remicade. This is the medication that costs $40,000/year and is given by I.V. infusion once a month. We're absolutely ecstatic -- particularly Amanda. She's so looking forward to getting some relief. From what the rheumatologist tells us, she should feel the affects by her second infusion.

Saturday, 28 July, 2007
Amanda had her second treatment the beginning of July and she's had no change in her symptoms. She still complains of sore knees, ankles, and now both sides of her jaw. We had an appt with a dentist this week and there was no evidence she grinds her teeth so this probably means the arthritis has moved to the right side of her jaw too.

Tuesday, 15 July, 2008

Well, it's been a year since Amanda started Remicade. What started out as a promising option sure hasn't ended up that way. Amanda is finding very little relief between treatments. I was hoping summer would give her some time to relax and recoup but it hasn't worked yet. We're back to treatments every four weeks and we've upped her methotrexate to 10.5 mg injectible/week. So far there's only been slight improvement.
The rheumatologist also suspects she has something called adolescent girl knee syndrome. What happens is, as girls develop and hit puberty, their posture changes. So their knees are no longer directly over their feet like they should be. So he's given us some exercises for her to do to strengthen the inner muscle of the thigh. The reason he thinks it's this is 'cuz the pain she feels when he's poking at her isn't on the joint line - it's sorta the top of the knee. And there is no heat in the knees which means it isn't an arthritis thing. The pain in her ankles is an arthritis thing - sore along the joint line and hot. So he's hoping the exercises will do the trick for the knee and the quicker drugs will help the ankles. He also said we have an option of increasing the dose of Remicade. So that's good to hear - I was afraid she was on as high as she could get. Her inflammation markers in her blood work are way down so I'm suspecting that we're dealing with chronic inflammation now as opposed to acute.

Wednesday, 20 May, 2009Spring has again brought with it agony for Amanda. She has had no relief from her Remicade appointments. I hope that, with the warmer weather finally arriving, she may soon find some relief. She's missed quite a bit of school but has managed to keep up with her studies. And high school is just around the corner!!!

Wednesday, 13 October, 2010

Right now she's doing alright. She had an absolutely awful spring. Her fibromyalgia really kicked her ***. She misssed more school than she attended but she still managed to have an 80% average last year! She got into a vicious cycle - she was too sore to exercise but exercise is supposed to help. The chiropractor didn't work. And the low dose antidepressants to help her sleep help somewhat but not enough. When thigs warmed up and dried out, she noticed an improvement.

She had a pretty good summer. She spent most of it in a wheelchair but that was preventative as well as reactive. She had some pain and we didn't want it to get worse so using a wheelchair helped with that. Disney service is incomparable most times but out of this world when you have someone who needs a little help!

Amanda started grade 10 and seems to be off to a pretty good start. She's had a couple of weird things. First off, her chest hurts. Apparently there's a joint in the chest and pain there is often a teenage girl sympton but seems to be unrelated to her arthritis. Then her hands have been shaking. Not sure what is happening there but it seems to be increasing in frequency. She is scheduled for her next Remicade treatment in a couple of weeks so we'll discuss that with the pediatrician.

Her uveitis has been under good control as has the pressure. We're hoping we've turned a corner with this because it's been a rough battle. After the last surgery in November 2008, it took a long time to get things calm again. I know God isn't supposed to give you more than you handle but He really bit off more than I can chew sometimes! But Amanda has managed to face it all with her usual grace and strength. She amazes me sometimes. Now, I'm not saying she's perfect - on top of the pain, there's the teenage girl thing that can make things difficult. But she's usually able to keep a smile on her beautiful face

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Anita Moorjani "Ponovno rodjena"


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Pridružen: 18-06-2008 14:05
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Višestruki artritisi u obitelji:


Heidi Sloan

I live in Lakeland, FL and have two children- both having JRA. My 8 year old son, Jake has poly JRA. My 6 year old daughter, Hannah, has systemic JRA. If you are interested in learning more - please visit my blog at thesloansiblings-myjraheros.blogspot.com I might add- I also have JRA. I was diagnosed myself at age 3 and unfortunately never outgrew it!

TIffany Googin

I'm Tiffany (dx w/ RA & Fibro this year) and my husband is Derek. We have 3 children: Joshua (14 yrs old), Mark (12 yrs old, dx w/Poly JIA Feb. '09), and Charlotte (3 yrs old, dx w/ Poly JIA April '10).

Brandi Schemerhorn

and I am a mom of 4. My stepdaughter Alex, is 15 (16 at the end of the month) and has pauci JIA, my 7 year old Nick has poly JIA.

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Anita Moorjani "Ponovno rodjena"


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