JRA plus Uveitis

[nikitasahney]

Hi All,

My daughter Reya was diagnosed with Pauciarticular JRA and uveitis at the age of 16 months. She will now turn 3 on feb 8th. We started our round of visiting doctors when we noticed she was unable to move her wrist up and down. Initially a few docs dismissed it as an injurty that was not showing up on the X ray. Within a few weeks she had swellings on her knee, wrist, ankle. She was finally diagnosed with JRA in July 2009 beginning. However, our local doctor did not recommend an eye check up and I further researched the internet to see that kids with JRA must get an eye check up. I took her to an eye doc, who told me that her inflammation was severe and inaction will lead to loss of vision. We finally found a ped. rheumatologist in Delhi (In the whole of India there are hardly 3 or 4 ped. rheumatologists) who immediately put her on an aggressive treatment – Injected affected joints with corticosteroids injections, oral omnacortil (Steroid) for 3 months, methotrexate injections and folic acid and calcium supplements. For her eyes, she was put on steroid based drops at 8 times a day.

Within just a couple of weeks post the methotrexate, her liver enzymes started going up. We had to discontinue the Injectable Methotrexate and once the level was stable we restarted with oral methotrexate on a low dose and continued to up it. However slight swelling in ankle/knee started to reappear and once again affected areas were injected with corticosteroids in December 2011. Post this, her doc restarted her on injectable methotrexate again. It has been 6 weeks and her liver enzymes are twice the normal upper limit on weekly blood tests.

I started research on the net and came across a book by Dr L who practices in New York. We took an appointment and visited him end of Jan 2011. He has highly recommended that we put Reya on Humira – a biologic that completely kills the immune system.

I have also read the book by Henry Schamell and Dr. Brown and on contacting a RBF volunteer she recommended to see Dr. S. The problem is that the rest of my family is not convinced about AP. I prefer going on AP and not biologics. I went through the posts on the General Discussion and could not come across anyone using AP for Uveitis and JRA. Continued Topical steroid drops for the eyes can cause Cataract and glaucoma. Although she has comedown to drops at twice a day.

I go through days when I am very strong and want to fight this but there are days when I am so low at the thought that my daughter might never get better. I just want to drive this disease into remission and I want her to lead a full life without having to worry about medication. She is stable now, doesnt complain of pain, runs around and plays normally. We wouldhave continued with Methotrexate if it didnt affect her liver. But it causes her to catch too many infections, she harldy goes to play school once a week and comes back with cough, cold, fever….She is a little fighter and very cooperative with her injections, eye drops, blood tests & eye check ups.

It has been a frustrating 18 months for us when things start looking up for a bit, and then her blood tests show high SGPT/SGOT levels.

I am really looking for feedback from members who have tried AP for JRA and uveitis.

Looking forward to hear back soon……

[gordbentley]

AP works for all rheumatic diseases. this is only my understanding though. I highly recommend the treatment as someone who has gotten there life back from it. 🙂

[Parisa]

Hi Nikita,

I’m so sorry that you have to go through this. It’s so much more difficult when you are dealing with young children. When you do something that goes against the conservative mindset it’s hard enough but it is doubly hard when you are dealing with a child. I have been on this board for 5 years and have seen many people do very well on AP including my husband so I know it can work. We have had a few posters with small children who are doing well and I hope one of them will see your post and chime in here. You are right that there isn’t too much on this site regarding uveitis but that doesn’t mean that it can’t be helped with an antibiotic protocol.

Some questions that I would have for your doctor is whether the prednisone, biologics or methotrexate have been clinically shown to help uveitis. It’s amazing if you start going through the clinical data that often times the case studies that doctors use to support a treatment don’t actually support the treatment. I know I found that out when I researched the use of Cytoxan for pulmonary fibrosis – here was a toxic treatment that they use to treat a serious condition and the research truly doesn’t suppport its use and still the doctors hold it out as a promising treatment.

I do know that if you find out the cause of your daughter’s illness and I believe all autoimmune disease lies in a cause whether it is toxicity (mercury, pesticides), infection (Lyme disease, mycoplasma) and/or a combination of these factors and then treat that cause you can make the autoimmune condition go away. Treat the cause without destroying your daughter’s immune system.

[Jan Lucinda1]

There is a mom here whose daughter was diagnosed with JRA at 2. She is 7 and doing well on AP. I hope she sees your post soon and can share,

Jan

[Maz]

Hi Nikita,

I think it was me who spoke with you and gave you the contact info for Dr. S in Iowa and Dr. B in NYC. I think I also provided the names of the two docs in India, new to AP, but open to the therapy and consulting with Dr. S in Iowa.

Here is a wonderful JRA success story recently posted by a mother of a now grown daughter who was climbing to the summit of Mt Kilimanjaro!

viewtopic.php?f=1&t=5412&hilit=jra

I know it must be difficult knowing what best to do for your wee one, especially without the support of family members. However, there is a saying, “Insanity is doing the same thing, over and over, with the same result.” Something like that, anyway.

Personally, I would never put a child of mine of a biologic drug…there are serious warnings for a possible association of lymphomas in children, which are now listed “black box” warnings on this class of drugs and it’s just my fellow patient belief that these shouldn’t be taken lightly.

http://www.fda.gov/Drugs/DrugSafety/PostmarketDrugSafetyInformationforPatientsandProviders/DrugSafetyInformationforHeathcareProfessionals/ucm070725.htm

Perhaps you can discuss these risks with your family and that you’d rather take a more benign, safe approach?

Infectious causes have been tied to uveitis, as well, and you can research this on sites like PubMed. Here is just one article I came across:

http://www.rpbusa.org/rpb/eye_info/page_2/

Of course, this article also states that “autoimmune” diseases may cause uveitis, but considering that even the American College of Rheumatology released a recent press release tying oral infections to RA, it’s not a far stretch of the imagination that we aren’t too far from Brown’s theories being validated, once and for all.

https://www.roadback.org/EmailBlasts/ebulletin_fall10.html

I think I might have mentioned to you that tetracycline abx are contraindicated for children under 8, however there are abx that may be substituted in pediatric cases that can be supplied in oral suspension. Again, Dr. S would be the man to assist you with this if you manage to send him an email.

Nikita, so happy to hear your daughter is at least not wholly crippled by her JRA, but I can sense your mother’s angst and concern and no doubt all our hearts are going out to you tonight. Please stay in touch and let us know what you decide and how we can support you if you do choose abx therapy for your baby girl.

[Suzanne]

Nikita,

Vision is so important and it can silently slip away in children because the uveitis does not cause pain. I know you want to get the uveitis under control as soon as possible.

My daughter only presented with JRA, so we have never had to use AP as a means to control it. She has regular eye exams (every three months) and in almost six years, the ped opth has only found evidence of inflammation twice – only a few cells that could mean something, or could not, but he treats right away. Both times things settled down.

He has often commented how he is surprised that her eyes stay so quiet without her being on more meds. I don’t know that AP would work fast enough to get severe uveitis under the control you need as fast as you need it, but I wouldn’t discount AP as far as helping keep it quiet once you have control.

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[evalon]

Hi..I’m one of the Moms that has a child with JRA..like your baby..she was diagnosed at 18 months….we also saw Dr L in NY..he was the 4th ped rheum we saw…he was the 4th doctor to ignore the work of Dr Brown..his drug of choice was Enbrel- we refused…it took us 9 more months to find a doc that believed what we all here believe and as was previously said- there’s a CAUSE….and the doc needs to treat the cause..not the symptoms….our little girl could not stand or walk..Dr B in NY put here on abx and very low dose of prednisone…this was last May….now..she just turned 3..she can run and jump and dance again!!! FIND a doc that will get you the antibiotics!!!! try to ignore the disapproval of your family..I had to fight almost everyone….the people that helped me thru are Maz and the other wonderful folks on this site…they gave me strength and knowledge and compassion to carry on despite what everyone else told me. And we will do the same for you. You know in our heart that Dr Brown was right..that’s why you’re here…follow your heart..this is the place! ev

[DragonSlayer]

Hello, nikitasahney:

I am sorry You have been going through this, and I don’t think I am really qualified to suggest very much in the case of a child, but I can only give You my opinions:

JRA might be less common because it is really misdiagnosed AS (JAS), which is a very severe condition not unlike Crohn’s Disease.
I don’t know how common uveitis is in RA, but it is common in very severe AS.

If I were in this situation, I would have the HLA B27 antigen test (Fc or ELISA molecular level; not serological) performed.

I would not rule out biologic drugs, but if AS, it is important to use antibiotics immediately and the right ones, too! And diet is EVERYTHING in this particular disease.

Best of Luck,
John

[nikitasahney]

Dear Parissa,

Thank you so much for your reply. I hope I find the answers soon. I really dont want to start her on the biologic. That kind of sounds like the last resort. I wish I could find someone whose uveitis got cured with AP. That way I will have proof to show my family. We have been in this now for more 19 months. I have to find a way to get my daughter fine and off all these medication.

Thanks again,
Nikita

[nikitasahney]

@Maz wrote:

Hi Nikita,

I think it was me who spoke with you and gave you the contact info for Dr. S in Iowa and Dr. B in NYC. I think I also provided the names of the two docs in India, new to AP, but open to the therapy and consulting with Dr. S in Iowa.

Here is a wonderful JRA success story recently posted by a mother of a now grown daughter who was climbing to the summit of Mt Kilimanjaro!

viewtopic.php?f=1&t=5412&hilit=jra

I know it must be difficult knowing what best to do for your wee one, especially without the support of family members. However, there is a saying, “Insanity is doing the same thing, over and over, with the same result.” Something like that, anyway.

Personally, I would never put a child of mine of a biologic drug…there are serious warnings for a possible association of lymphomas in children, which are now listed “black box” warnings on this class of drugs and it’s just my fellow patient belief that these shouldn’t be taken lightly.

http://www.fda.gov/Drugs/DrugSafety/PostmarketDrugSafetyInformationforPatientsandProviders/DrugSafetyInformationforHeathcareProfessionals/ucm070725.htm

Perhaps you can discuss these risks with your family and that you’d rather take a more benign, safe approach?

Infectious causes have been tied to uveitis, as well, and you can research this on sites like PubMed. Here is just one article I came across:

http://www.rpbusa.org/rpb/eye_info/page_2/

Of course, this article also states that “autoimmune” diseases may cause uveitis, but considering that even the American College of Rheumatology released a recent press release tying oral infections to RA, it’s not a far stretch of the imagination that we aren’t too far from Brown’s theories being validated, once and for all.

https://www.roadback.org/EmailBlasts/ebulletin_fall10.html

I think I might have mentioned to you that tetracycline abx are contraindicated for children under 8, however there are abx that may be substituted in pediatric cases that can be supplied in oral suspension. Again, Dr. S would be the man to assist you with this if you manage to send him an email.

Nikita, so happy to hear your daughter is at least not wholly crippled by her JRA, but I can sense your mother’s angst and concern and no doubt all our hearts are going out to you tonight. Please stay in touch and let us know what you decide and how we can support you if you do choose abx therapy for your baby girl.

@ Maz

[nikitasahney]

Okay I am a little new to posting replies and am not sure how to navigate around to post individually.
So a big thanks to all of you who replied. I had a couple of questions for Suzanne and Evalon
@ Evalon

[Suzanne]

@nikitasahney wrote:

@ Suzanne

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[Maz]

Hi Nikita,

Forum member, Transam, just posted a message to you on the following thread.

viewtopic.php?f=1&t=5755

[nikitasahney]

I just posted a reply and I dont know where it went… 😀

Thanks Suzanne for replying in detail. I will stay in touch and maybe ask a zillion questions more……

One question I have is, how often does your daughter have to personally visit the AP doctor. As I will probably be able to come down twice a year and coordinate the rest from here in India. Your reply would help me to work out the economics, whether its cheaper to stay there for some time or to travel to and fro.

[Suzanne]

@nikitasahney wrote:

Thanks Suzanne for replying in detail. I will stay in touch and maybe ask a zillion questions more……

One question I have is, how often does your daughter have to personally visit the AP doctor. As I will probably be able to come down twice a year and coordinate the rest from here in India. Your reply would help me to work out the economics, whether its cheaper to stay there for some time or to travel to and fro.

Ask away, I’m happy to answer!

She was much younger when she started AP, and the first dr. we traveled to wanted monthly phone calls and would order more frequent labs, which we had done locally and sent the results to him. After he retired, we had to travel even farther but she also already had the history of doing well on AP. We see her current AP dr. twice a year, and in between she sees her ped rheum, ped opth, and pediatrician, so she is well-monitored. Anything adverse as far as AP would have been caught long ago, I can assure you.

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[Author]

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