chronic uveitis and JRA and psoriasis

[ccrawfor8645]

My daughter has had juvenile rheumatoid arthritis and chronic uveitis since she was 2 1/2 years old. She is now 6 years old. She recently started to have psoriasis. She has taken a lot of drugs that have not worked. The latest thing has worked was methotrexate injections, remicade iv infusion every 5 weeks, dilation drops for the last 2 years. Her count for eye inflamation was about 7 in each eye, started at 30. This past May, she was diagnosed with kidney inflamation with excessive protein and blood in her urine. She was taken off remicade. Now her eye inflammation have gotten worse to be back to what it was when she first diagnosed - 30 count. She was put on prednisone eye drops and oral meds. Her eye pressure went way high, was taken off the eye drops, put on eye pressure drops and kept on the prednisone oral pills. Then, they tried to put her on zenapax the past month. It worked after 3 infusions but now her eyes are back to a count of 25 after a week. They are going to take her off zenapax and put her back on remicade. She is still on MTX injection. The zenapax seemed to have gotten rid of her psoriasis though.

We have tried cellcept and azathioprine. She was taken off these very shortly after as it caused her to have extreme nightmares after only a few days, screaming 4 - 5 times a night. Sulfazalzine and cyclosporine did not work either.

My feeling is that the Remicade caused the kidney inflammation. We are being told no, as the kidney biopsy was inconclusive.

We live in PA. Her eye specialist is about to give up and want to send her for another opinion at National Institute of Health in Maryland.

If you were to look at my daughter, you could not tell that anything is wrong with her. Her MTX handles her arthritis great.

Has anyone have any ideas? I really don't want to have to go to Boston.

Concerned mom.

[mtbargeman]

Dear Concerned Mom-

I am sorry your little girl is in such a vile predicament. If it were me, I would find a way to take my daughter to Boston. The expense and inconvenience will certainly be worth it. If her Uveitis is not controlled, and quickly, she will lose her vision.

The grading scale goes from 1-4 for inflammatory cells within the eye. Could her Dr. have been calling her eye pressures at 30?? Who does she see? What is her visual acuity? Mine is 20/80, corrected with glasses, 20/400 or worse without. Of course, I'm not a doctor, and these are just my thoughts on this extremely important matter.

Blessings to You and Yours,

Mary```````````````````````````````````````````````

[Mike Bartolatz]

yes I do have an idea for you. PLEASE contact Dr Nugyen in BALTIMORE at John's hopkins. he is the NEXT BEST THING TO DR FOSTER IN BOSTON. tell him I sent you from the foundation support network. he knows who I am.

you are caught between a rock and a hard spot. some kids have a TERRIBLE time getting off of corticosteroids.
don't go to NEI in Bethesda, you need someone trained by doctor Foster to get this done right.

hopefully the new drug LX211 will be approved by the FDA within the next year and she can try that, Girls with JIA have a terrible time with uveitis. Please read the information in the ANNOUNCEMENT section of THIS forum on the topic 3 genes, 4 major disorders. with your daughter having Psoriasis, she probably doesn't have JRA. she may have the IL23R, ARTS1 or the IL1RN genes. the zenepax along with Cyclosporine might be the way to go.

I'm not a doctor. I've been helping people for about 10 years now with uveitis. I know parents with kids with JIA and uveitis back in the Philly area. one is a medical doctor who's daughter Has JRA. He takes his daughter to Boston with DR FOSTER.
I have met Dr FOSTER twice, attended a Continuing Medical Education Course that he sponsored in Boston a few years ago and I help out at his Pars planitis.org site and his Uveitis online Support group teaching people the connection between various things and uveitis. WE have a parent's forum at this site and I can get Renee' to respond to you. her daughter came down with uveitis at about 6 years old if I recall correctly and has had three vitrectomies to get her uveitis quieted down. her daughter also used just about every medicine known to man to try to get her uveitis under control. she travels from Depoe Bay, Oregon to Cambridge to see Dr Foster every six weeks.

I'll get Renee' to respond to you here.

DR Nguyen's contact information in Baltimore is on Dr Foster's list of specialists, I'll post the information for you here.

Wishing you the very best,
Mike BArtolatz

[Mike Bartolatz]

Quan D. Nguyen, MD Background | Publications | Research
The Wilmer Ophthalmological Institute (Website)
The Johns Hopkins Hospital
Maumenee 708
600 North Wolfe Street
Baltimore, MD 21287
Tel: (410) 955-2160 Fax: (410) 614-6995 | Email

Dr Nguynen is perhaps teh BEST Student Dr Foster has ever had. He is also a Retina Specialst as well as being a Fellowship trained Ocular Immunologist. He is the ONLY specialist I will send people to in Maryland, Virginia etc. others that I send to are Dr Chu in New Jersey and DR Samson in NYC. all trained under DR Foster At Harvard and MEEI and MERSI where he is now located along with the Ocular Immunology and Uveitis Foundation in Cambridge.

wishing you a speedy appointment. Please call on MONDAY and get things rolling for your daughter. don't wait until the New Year. the problems with her steroid repsonder status causing elevated intra Ocular Pressure indicates a critical need to quickly establish a corticosteroid sparing approach to treatment.

God Bless,
Mike

[ccrawfor8645]

My daughter's eye pressure is usually 17/18. The count of inflamation started at 30. Under Remicade for 2 years it went down to a count of 7. Then she developed kidney inflamation and they stopped Remicade. Her eye inflammation went back up to 25/30. They started Zenapax and it went the count went down to 12 after 3 infusions. After another week, the eye inflammation went backup to 20/25. They quadroupled the dosage and after 1 week, it still has not gone down. They want to stop the Zenapax and go back to Remicade for now and watch her kidney inflammation that is going down slowly with daily doses of Prednisone orally 30 mg/day.

I really don't want to put her back on Remicade.

I did a Google search for 'chronic uveitis or iritis'. I found some articles on the idea that the body may be lacking some herbs and found some chinese herbs to try. I don't remember the sites. Does anyone have any suggestions to this alternative approach. I don't want my daughter to ge a walking pharmacy and used as a case study to try different drugs that can have harmful affects later in her life.

The last resort is to use a very powerful chemotherapy drug that I dont't want!!!! They also mentioned steroid injection directly into the eye. That would be only short term. I want a long term solution that won't hurt her body so she can live a good half decent life even though she may have to take drugs for the rest of her life! I want to preserve her eye site!!!!!

Any ideas for 4 years of frustration!

Concerned mom from PA!

[Mike Bartolatz]

in my lay opinion, herbal alternatives are NOT an appropriate thing for you to try. there are no studies to provide scientific support for their use. it is like a sugar pil as a placebo. the mind can make some things occur that we cannot explain and the majority of people find no response to the treatment.
your child has been dealt a very serious case of uveitis with underlying autoimmune disease processes causing systemic havoc as well as the drugs. it will take a very concerted effort by a very skilled Ocular immunologist to quell the inflammation in her eyes. I know of only a couple of people in the world that I would trust to take my child to if I were making the calls here. Dr C Stephen Foster in Boston/Cambridge and DR Nguyen in Baltimore would be my choices in that order.

I will have a parent of a child interact with you here. she is from Oregon and her daughter had major surgeries at least 4 times to remove the vitreous and to freeze the pars plana repeatedly due to this stuff. she went through just about every possible type of drug class to stop the attack on eyes. today she sees VERY WELL but at times she was legally blind.

Renee is the moderator of our parent's forum. I'll send her an email asking her to respond to you. she knows EXACTLY what you are going through. she travels between Oregon and Boston every six weeks. her community has stepped up and helped her fund the costs associated with this.

Wishing your child the very best,
Mike

[Mike Bartolatz]

http://www.google.com/search?hl=en&q=IL ... h&aq=f&oq=

above is a google search on IL23RN in Psoriasis and psoriactic arthritis. this gene causes the TH17 expression by the CD40 T cells in the inflammatory process. TH 17 is implicated in the cytokine response in uveitis. a combination of other drugs might help since Remicade has caused problems in the past. Humira for example has been approved for use in children.
other drugs such as Cyclosporine A affect TH 17 producition and it could be added along with the dacluzimubab which also affects TH 17 indirectly.

I'm not a doctor. only someone very skilled in the use of these new biological response modifying drugs and chemotherapeutic drugs can develop a cocktail to stop the inflammatory cascade that is occuring in your daughter.

I do know the terror that this stuff can bring about in patients as I came down with this over 43 years ago as a teenager.
I have also seen the terror that parents have when trying to stop this in their kids with uveitis. I sincerely hope that you can find a way to see Dr Foster or Dr Nguyen soon.

wishing you the very best,
Mike Bartolatz

[ccrawfor8645]

I have talked to other people that have taken Humira for JRA where the injections are every 2 weeks. They said that the affects wear off at the end of a week and the next week they know when the injection needs to be taken again. Most got switched to another drug.

My daughter was the first kid to take the Zenapax IV infusion for her eye inflammation at the hospital that we go to for her. It is given there for other reasons like transplant rejection prevention. What I would like to know is why it worked for 3 infusions very well and the next week her eye inflammation count went back to where it was before starting the new Zenapax drug. I Googled for chronic uveitis or iritis and found some articles that mention that new allergies and stress can also affect chronic uveitis. Is this true? We currently are having mold problems in our house. I do notice that since the mold problem got worse, her eye inflammation got worse and her allergies also got worse. She was tested not to long ago and mold was not one of the items that was on the positive result, only dust and dust mites were positive. I have also noticed that her psoriasis got worse when on Remicade. Since being off Remicade, the psoriasis is all gone but that was about the same time she started Zenapax also.

My daughter was on cyclosporine at the first chronic uveitis diagonsis and it did not work. Also, she was first diagnosed with JRA, there was no chronic uveitis until about 6 months after that.

Is there a difference between uveitis and iritis?

Has anyone else heard if Remicade can cause kidney inflammation? My daughter's kidney biopsy was inconclusive to say it was. Her kidney inflammation was not as high as what was expected, was a small concern to reduce it but not a major concern yet. I have seen that kidney problems can be a side affect of Remicade and was told that it was reported for adults but not for kids.

I am pretty sure that it takes awhile for an IV infusion to show its results right after the infusion like a week or so rather than a few days. My daughter has been doing 2 week intervals between Zenapax iv infusions since starting it less than 2 months ago. It has only been 1 week since her last infusion that was made 4x the lowest dose. She had an eye appointment only 2 day after that infusion. Her next appointment will be 1 1/2 weeks. May be it takes a week or so for that dosage to see results. Has anyone seen results from Zenapax trials? NIH really did not say that much about their study on their web site. Her rheumatologist had to find a study in a British journal to find more information about the dosage and schedule and is basing it on that.

I could go on and on about her history, drugs tried and the frustration. I have learned to be patient for a short time because it takes some time for a drug to actually show its results based on my own health and my husband's health. I just take it day by day at this point.

My daughter's pediatric rheumatologist thought she had psoriatic arthritis at first but said it was hard to tell the difference between that and JRA. He also said that that the treatment for both is the same.

My daughter has a second opinion appointment with another local eye specialist tomorrow. She also sees her first eye specilalist week too 1 1/2 weeks after her last Zenapax IV infusion. I plan to make an appointment with DR Nguyen in Baltimore very soon. Her specialist wants my daughter to go to the National Eye Institute at the National Institute of Health. Her pediatric rheumatologist doctor wants her to go see Dr. Foster. Boston is really not a viable but Maryland is more viable as it is about 2 to 2 1/2 hours drive from my home.

The eye pressure is normal for now, just the eye inflammation is high. The arthritis is under control also, as her allergies, asthma and psoriasis. My daughter has acid reflux when a baby for a year and out grew it. She has problems now and then but not a problem that can't be dealt with with Zantac and watch how much acidy foods she eats at one time.

Thanks to her ped rheumy, my daughter is on medical assistance besides my husband's primary insurance. The only problem is that her eye specialist does not except medical assistance. So the office copay comes out of our pocket. Luckily we keep track of the mileage and copay's and claim it on our federal income taxes each year. The onlly thing going to Maryland is having to check with my husband's primary insurance to see if they are covered (those PPO's can be a pain sometimes).

I have read articles that some natural foods and also environmental things can cause inflammation to increase. I also found some articles that there are some foods that are natural anti-inflammatory ones like watermalon, blueberries, fish. I also have read about acupuncture that gets your body's back in line with its aura (spelling???). I believe that there may be something to eating the right kinds of foods and and non-western medicine sometimes as an aide to western medicine.

[Mike Bartolatz]

at some point you may have to fight insurance companies to get care through a specialist. I can't believe your opthalmologist won't take the insurance. often this happens though and I hope that our country will one day have a SINGLE payer system of insurance and that it will allow us to see real specialists like Dr Foster and Dr Nguyen,
in the scheme of things, the travel between pennsylvania and Boston is allot easier than that which MANY of us have to go through to get care. I've traveled thousands of miles for my care every six weeks while in the USAF from Istanbul Turkey on a military airevac on mulitple planes taking over a day and a half to get to a military hospital in Germany.. we do what we have to do to prevent BLINDNESS. I agree with your rheumatologist.

wish you the best,
Mike

[Mike Bartolatz]

Mike for some reason it won't let me log in. I know what my password is, and I can't get it to work. Could you please copy and paste it for me. Thank you!

Hi, Let me start with your questions regarding iritis vs. uveitis. Uveitis is a general classification for ocular inflammation of the uvea. Iritis is inflammation in the anterior (front) part of the eye. Pars planitis is inflammation in the middle (intermediate) of the eye. Posterior is inflammation in the back, and Panuveitis is inflammation of the front, middle and back of the eye. My daughter has uveitis, which presented as pars planitis. It has turned into panuveitis, however, and can present with inflammation in either or all chambers of the eye.

It takes awhile to find the right medication to treat uveitis. Everyone is different, and has different kinds of uveitis, so there is no "right" treatment for any given person. I have come to realize that meds have a timeline that the Dr. can see if the treatment is working or not. It is usually within 6 weeks or so. At that point, it is decided to increase doseage, or add another med to the mix. If after increasing the doseage it hasn't done its job yet (which is getting to the point of tapering all steroids oral or drops) then it is high time to move on. The tricky part of this is to find the right Dr. who knows how to move along and not sit and watch irreversable damage being done to the eyes. Mike gave you two wonderful choices to choose from. I owe my daughters vision to Dr. Foster.

Some natural remedies along with aggressive treatment isn't a bad thing as long as the prescribing Dr. o.k.'s it. Too much vitamin C, for example, can cause another bout of inflammation just from stirring up an already active immune system. I learned the hard way on this.

As far as researching medicines, go to pubmed.org and type in the medicine that you want to read about in the search engine. I know two parents who are giving humira to their children and who rave about its effectiveness. My daughter failed lots of meds. She finally did find one that worked for her because of Dr. Fosters tenacity, and simply not giving up. She has been off all meds since September. I am here to tell you it does work. The journey is long, but when being treated by the right Dr., the fight can be won.

I'm not feeling so well tonight, but will try to see if I can post at the site tomorrow. I might need to ask Kevin for some help.

Thanks Mike,
Renee'

[Mike Bartolatz]

your story is so very complex. the Remicade has been known to bring about systemic Lupus erythematosus like symptoms in patients which can include kidney problems. the genes I mentioned can also be related to SLE as well as Psoriasis and psoriatic arthritis. Remicade is a biological Response Modifier that acts against TNF A. Zenepax is in a different class of BRM's that affects Interleukin 17 and TH 17 if I recall correctly from the articles I posted here. Cyclosporin A affects IL2 production which can effect TH 17 production too. using both cyclosporine A and Zenepax might allow them to stop production of TH 17 from two directions if you daughter has the IL23RN and the IL1RN genes related to this stuff.
the articles I posted regarding these genes indicates that if one has them the resultant disease is more difficult to treat. this might be the case with your daughter. I don't know what is required because I AM NOT A DOCTOR. I can only tell you what research has indicated because of my limited medical knowledge. I am trying to give you hope to continue to search for means of getting your daughter to: Off all steroids without inflammation. this journey has been difficult for you and your medical team and they need the help of others from their statements to you.

you asked about iritis and uveitis. Iritis is inflammation in the anterior segment of the eye through the uveal tract that nourishes the eye. it continues through the middle to the back of the eye. why some people only get iritis is a mystery while some others get intermediate uveitis or posterior uveitis. some get it throughout the eye. the longer one has uveitis, often more parts of the eye become inflammed. you mentioned corticosteroid injection into the eye, doctors don't like to do this because of the risk of infection as well as the effects on tissue by the corticosteroids. very difficult to control Glaucoma can result from this type of injection as well as cystoid macular edema, retinal detachment etc. injection to tissue surrounding the eye with SHORT ACTING steroids is often used. this allows a constant rate of absorbtion of the steroids by the eye rather than a short burst of steroid ever so often by the topical eyedrops. I had many of this type of steroid injections over my long history with my uveitis which attacked the anterior and middle parts of my eyes.
they sound allot worse than they are. your young child would be sedated for this.

I wish I had answers or the physical ability to help but I don't.
you mentioned that you and your husband have health issues regarding medicines. do either of you have systemic autoimmune disease related to uveitis?
in some ways yes, the treatment of uveitis is similar to that of JRA since both can be autoimmune related.
the methotrexate downregulates the immune system stopping the production of the inflammatory T Cells your body makes thus lessening things like TH 17 production. often other meds like Zenepax and Cyclosporine are added to the MTX to hit the inflammatory proceses from multiple angles in cases such as that of your daughter.

there are promising new BRM's in development targeting these various types of inflammatory substances given off by our immune systems. Hopefully they will become available for general use in the near future. less than 10 years ago much of what I have told you was not known by anyone in the medical community. with improved DNA analysis and other testing means to actually find out how drugs work on the inflammatory processes and to be able to identify what these inflammatory products are has only been common knowledge over the past 5 or 6 years. more has been learned in the past ten years than in the preceeding Century.

Wish you the very best,
Mike

[Mike Bartolatz]

There is hope on the Horizon for children with uveitis by way of Luveniq (LX211). Lux biosystems the maker of this drug are seeking approval in Europe dependent upon the approval for use of this drug in adults. final results of the study are to come out in the first quarter of 2009. hopefully the FDA here in the USA will approve it for use soon after if it can be fast tracked.

http://www.luxbio.com/pr112608.htm

[Mike Bartolatz]

http://www.medscape.com/viewarticle/580739

new research and information on Psoriatic arthritis, drugs to treat etc

[ccrawfor8645]

Are there doctors in the Philadelphia area also that were trained by Dr. Foster?

My husband and I both do not have arthritis issues. He has high blood pressure, asthma, allergies, ... I only have allergies and now allergy induced asthma.

I am not sure if I asked this question. Can just an allergy attack increase eye inflammation?

We did see the second opinion of another eye specialist that my husband's classmate had. He could not help my daughter. But his exam did say that her eyes are now 20/20 after allowing a 1 1/2 week from her last Zenapax infusion that had the dosage increased again and the inflammation cound is down again to about 15. I have been trying to keep her on her oral prednisone each day. I was lacking there for awhile. May be the the combination of the 2 has helped. And maybe, just letting the new increased dosage to take ahold may just have been the key also. The second eye specialist has suggested also to take my daughter to John Hopkins Eye Institute in Maryland or to Philadelphia Wilks?? Eye Institute. He knows some folks and are going to give them a call and try to connect them with me to setup appointments. He said they are the best also and have doctors that deal with JHA and chronic uveitis as their total speciality. He also said that if I just tried to call them myself, it may be until next March to get in. If he initiates the call, things may go to a faster pace.

I know there are 2 Eye Institutes in Maryland - one associated with NIH and one associated with John Hopkins. I was also told that there is an Eye Institute in Philadelphia, PA, that is also good.

Thanks for the information. I am eager to hear from Renee again.

[Mike Bartolatz]

PLEASE do NOT take your child to the 'other' specialists, take her to dr Nguyen.
there are NO uveitis specialists in the state of Pennsylvania with the qualifications and abilities needed at this time that I am aware of. I've been in the support network for over ten years now and I have only seen horror stories from so called 'experts' .

yes it takes awhile for the biologicals that affect this stuff to take hold. here is a promising drug for treatment of Psoriasis:
http://www.medicalnewstoday.com/articles/96802.php

it can also take time for the added drugs like cyclosporine to work too. the immune system has to stop producing the TH 17 cells implicated in the immune response.
the goal is OFF ALL STEROIDS, WITHOUT INFLAMMATION, trace cells is NO inflammation. once to this point it takes TWO YEARS of the combined drugs before one starts weening off them. if a flare starts, one has to get off the steroids and then the two years begins again. this will be a very long journey with hardships for all of you in order to preserve your childs vision. I truly wish I could say that there is someone next door to you to do this but that is not the case.

I am sticking my neck out with this response, Please believe me and go to Dr Nguyen or DR Foster in Boston.


mike