eye problems with JRA

[nikitasahney]

Thanks for the reply…..How did her eye check up go?

[transam]

We went to hey eye doctor today, in her right eye, the inflamation went down so we can reduce the drops to twice a day. In her left eye, the inflamation is still there so we have to raise the drops to four a day. We go back to her eye doctor next week. She also has astigmatizm and will need to get glasses.

[nikitasahney]

Oooh…..I am sorry she has to get glasses. But trust me will look very cute. My daughter got hers just day before yesterday and looks adorable.

I have been planning to go see Dr. F as well. I hope the meeting turns out well!

[transam]

Where are you coming from?

The Arthritis Center of Riverside is in a new beautiful building and its extremely clean. The doctors and the entire staff are really nice.

[nikitasahney]

Coming from India….

But having a lot of problems trying to get a local doctor on board as her treatment will have to be long distance. Spoke to her Rheumy who said that if Antibiotics could help cure JRA then it would be “Breaking news”. We really look upto her and want her to be on board for treatment involving antibiotics. So that she can monitor my daughter’s progress.

[Maz]

@nikitasahney wrote:

But having a lot of problems trying to get a local doctor on board as her treatment will have to be long distance. Spoke to her Rheumy who said that if Antibiotics could help cure JRA then it would be “Breaking news”. We really look upto her and want her to be on board for treatment involving antibiotics. So that she can monitor my daughter’s progress.

Hi Nikita,

Well, this is the thing…no one is going to ring the praises of antibiotic therapy, because there is no huge financial incentive to study a cheap antibiotic(s) for JRA or any other rheumatic disease. A good number of studies are funded by pharmaceutical companies and, as most abx in use today are off-patent and produced in generic forms, with newer, more lucrative drugs coming onto the market that produce huge profit margins, the smaller studies that do trickle in occasionally are from independent researchers (like the Carter Reactive Arthritis studies in Florida or the ones recently presented at the American College of Rheumatology by researchers at New York University’s Langone Medical Center, tying oral pathogens to RA) are considered “fringe” studies.

Another factoid is that AP is a slow therapy and we live in a world of instant gratification…people don’t want pain and they want it ‘fixed’ right now. With very little support from the rheumatic medical community, very few patients are made aware of this treatment option and fewer still are told that the tetracyclines might be working for its anti-microbial props in addition to the immune-modulating ones. As it stands, minocycline is just considered a weak DMARD, at best, and prescribed in the standard doses it is given across the board to all rheumatic patients, the herxheimer reaction is likely misunderstood as disease worsening.

Do you think your daughter’s rheumy might be willing to read The New Arthritis Breakthrough, Nikita? It might just provide her with an understanding that antibiotic therapy has been around for a very long time and why the field of rheumatology got diverted from studying infectious when the ‘miracle’ of cortisone arrived. After that point in time, research shifted directions to looking for medications that would shut down immune function to palliate these diseases.

Doctors really like to see placebo-controlled, double-blind studies before feeling professionally ‘safe’ enough to try something different – not universally accepted within a current paradigm – and they like it even better if these types of studies are replicated and similar or same results are acheived by different researchers. This is often how medications are approved as a “standard of care.” However, what is usually not discussed is that rheumies don’t always know which drugs will help which patient anyway and the current “standard of care” is all about therapeutic probing…beginning with NSAIDs, moving onto DMARDs and then the more expensive, newer biologics.

So, for now, all there is are the few studies showing that tetracyclines are effective and a plethora of anecdotal evidence (which isn’t valued as scientific). That being said, neither was that the case for other off-label drugs, like methotrexate or plaquenil….both of which were designed for entirely different conditions (cancer and malaria, respectively) and were found to have some efficacy in treating inflammation and suppressing immune function in rheumatic diseases. So a reasonable argument that might follow this is, if other drugs are being used for off-label purposes (and they don’t always know why they work) and the tetracyclines have been approved for off-label purposes and many infectious causes have been tied to various rheumatoid diseases, then why not try it just to see if it works?

Much of this is described in the book, so if the doc would be open to reading it, it might help further your cause in seeking her support…particularly as Brown was a well-respected rheumatologist who treated thousands of patients successfully during the course of his career. There is also the article by Dr. T. in the last eBulletin that might provide further support….although I know that the use of tetras is usually restricted to over 8s. Brown did use other classes of abx successfully, though, as documented in the book. 😉

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

This further link might also provide more info to present to your daughter’s doc, entitled, “How to Approach Your Physician About Providing Antibiotic Treatment.”

https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/88.html

[transam]

Nikita,

Your rhuematologist will never accept antibiotic treatment. They will try and protect their job before they worry about your daughters future. Ava’s doctor at Childrens Hospital of Orange County (CHOC) just wanted to shoot cortizine in her knees and add Enbrel on top of the Methotextrate last year. Dr. Brown said in his book that is how it would progress. More and more drugs on top of each other and then when nothing works anymore, painkillers and drugs for depression. That is the path decribed in the book written over 20 years ago and that is exactly the path CHOC was putting Ava on. Lucky for me i found the book and was reading it right as this all was occuring. Ava’s CHOC doctor was angry when we asked her about antibiotic treatment and she told us to make up our minds now. We left and never went back.

I dont want to sound harsh but either you pay for three plane tickets a year now for a couple years or you will have to pay for more and more drugs, forever, with a guarantee of bad results. Dr F. said last year that he had great results with little kids and Ava’s test results last week proved him right. Dont let your rhuemy talk this treatment down. If my insurance wasnt going to cover this treatment for Ava i was going to get a loan against my house to pay for it. It truly was the best decision we ever made for her. I dont know if you have read the book about Dr. Brown but this will all make more sense if you do. In the book there is a section on Dr. Brown’s research into anthropology and its links with arthritis, My wife’s sister is a PHD in anthropology and i asked her about it and she confirmed several things Dr. Brown mentions in the book.

What part of India are you from?, my neighbor is from India and my wife’s sister’s husband just got back from india (he is studying for his PHD)

[nikitasahney]

Dear Maz & Mark,

Antibiotics are the way that I am going to go with my daughter definitely……

I am just trying my best to get my family and Rheumy on board. Since I am not working right now and my husband takes care of the medical expenses. If I can be persistent and win their support then this just gets an easier road for us.

In an ideal world I would have just moved to the US, but there will be visa issues, etc.

Mark – I have lived since I was 12 in a city called Hyderabad. Although I am originally a North Indian and from the state of punjab (I never lived there though)

[nikitasahney]

Also, I believe I have hit a road block but am sure will manage to convince my husband atleast.

[Suzanne]

@nikitasahney wrote:

Coming from India….

But having a lot of problems trying to get a local doctor on board as her treatment will have to be long distance. Spoke to her Rheumy who said that if Antibiotics could help cure JRA then it would be “Breaking news”. We really look upto her and want her to be on board for treatment involving antibiotics. So that she can monitor my daughter’s progress.

You will not convince her. She will have to see it with her own eyes, and will still say it is a coincidence.

My advice – don’t say “cure”. Ever. There is no known cure.

Ask if the treatment can hurt your child. The answer we always receive is ‘no’.

Ask if she will continue to see your child while she is on this treatment.

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

[nhoose]

hello, i am trying to get in touch with nikitasahney.
my daughter also has uveitis since 4 years old, now 8 1/2. we are about to go see dr. f in boston since she has developed a cataract. we started abx last year 2011 in sept. under the care of dr. b in ny state. her jra is much better but not 100%. please contact me so we can talk.
Thank you,
Nancy

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