HLA-B27 positive, 11 flare-ups in 3 years & Meditation

[Julie126]

Hi everyone,

This site has been very helpful to me. Nice to know that I'm not alone.

Dec.2007--Mar. 2008 (1 very bad flare-up, right eye)
I am 36 years old and I live in the SF Bay Area. I had my first Iritis flare-up when I was 4-month pregnant. When I noticed that my right eye was bright red, I was wearing contact lens and was at a petting zoo (didn't pet the animals though). Luckily, I was sent to a specialist right away due to my pregnancy. But still, the specialist wasn't sure if it was safe for me to use large doses of Pred Forte. She was reluctant to let me use enough Pred Forte and my inflammation got out of the control. I experienced the worst eye pain in my life. I got a shot in my right eye in the end and the Iritis went away after 8 weeks. I was tested HLA-B27 positive. I don't know what woke up my HLA-B27 gene. No one else in my family has Iritis. My mom has severe psoriasis though. Dr. Ira Wong told me that this gene is usually more quiet during pregnancy. Why am I the opposite??

Oct.2009--Jul.2010 (1 very bad flare-up, 5 minor ones, left eye)
One and a half years later, when I almost forgot about it, I had the second flare-up after an intensive trip. This was when the REAL nightmare started. Ever since then, I have had 10 flare-ups. Mostly in my left eye. I am always able to catch the flare-up in the very early stage (with rare or trace cells) and started Pred Forte and see the specialist right away. It took about 4-8 weeks to taper off the Pred Forte. For the 5 flare-ups during this period of time, the problem was that the Iritis would come back when I stopped the drop for 2 days. Later, it came back when I was still having it for twice a day. Meanwhile, I saw the rheumatoligist. All the X-rays and MRI scans showed that my SI & hip joints are normal. I had seen Ira Wong for about 8 months, who only sees patients at Stanford Hospital every Wednesday morning. With appointment, it still took more than an hour's waiting to see him and half of the time when he was seeing me, he was talking to/teaching his assistant. He gave me Predonisone tabs and Indomethacin. But I had very bad headache when I took Indomethacin, so I stopped taking it after 2 months.

Aug.2010-- Now (4 really bad flare-ups, both eyes)
For the resent 4 flare-ups, they were initially trigged either by food poisoning/bad flu or by long overseas flight, while I was still using drops like 2-3 times a day. I have seen Dr. Kim for over a year now, who was trained by Dr. Foster and Dr. Wang. She is the only Uviitis specialist in the Bay Area Kaiser. I still get to catch the Iritis very early when there are only rare to trace cells. However, it always bounced back when I lowered the Prednisolone down to every 3 hrs and this time, every 2 hrs. The bounce is so bad and so fast that it is usually 30+ or 40+ within 1-2 days. And, there are cells in both of my eyes for the last two flare-ups! I need the shot to control my inflammation every time now and both of my eye lids are drooped. I also need Timilol to control my eye pressure since a year ago.

So, this is my story. I have not stopped using Prednisolone for the last 2 1/2 years. Fo the latest 4 times, each tapering off takes about 6 moths. I don't have glaucoma but there is some cataract developed at the back of my left eye. I am having one flare-up right now that started a week ago and there are 30+ cells in my left eye and 5 cells in my right eye today.

Dr.Kim suggested me to start Mycophenonlate (Cellcept) last Aug. But I was really afraid of its possible side effects -- weakening my entire immune system (easier to get other sickness) and damaging lung function (not reversible?). Instead, I started to do meditation (真气运行法) about 3-4 hours a day. I think the mediation helps since I had a diarrhea and a bad cold in the past 6 months, but there was no flare-up followed right after the sickness, like what happened before. However, it did come back after I tapered off the Prednisolone to twice a week for 2 weeks.

Today, Dr. Kim wants me to start Prednisone 50mg Oral Tab daily until she sees me next week, as well as Predisolone every hour. My blood test from today is fine. She wants me to start Mycophenolate 500mg (Cellcept) as well. She said that it takes a year to start to work and I need to take it for 5 years. She said that she can have my blood tested every month if I am worried.

I am wondering if people in this forum who have been taking NSAIDs, such as Cellcept for 3-5 years, have developed any lung function damages or are easier to get sick? I would really appreciate your comments. I need someone who used it, and felt fine afterwards to help me make up my mind to start taking the NSAIDs.


Also, I was talking to a Cataract specialist the other day. He told me that people with HLA-B27 positive and Iritis, are not suitable to have the Cataract surgery. Two reasons. 1. No surgery while there is frequent flare-ups. 2. The inflammation would keep coming back after the surgery (or even more frequently since the lens are 100% foreign object now) and it will lead to permanent vision lost. Is this true?

Thanks for reading my long story. Sorry that I can't stop writing about it. Iritis has made me and my whole family miserable.... I was very happy for the past 6 moths b/c I had thought that my Iritis was cured by the meditation. I was almost ready to post something totally different here to introduce the eastern meditation (真气运行法) that I am doing. All of a sudden, bad flare-up again!:(

Once again, thank you so much to Mike Bartolatz, kwork, mtbargeman for keeping this site running.... Looking forward to hearing from you soon.

[Mike Bartolatz]

hI Julie,
suggest you go on something as you will end up with major damage to your eyes if you don't. you are already developing cataracts and glaucoma from this. I have been doing support for over 14 years now and I have NEVER had anyone develop lung function loss due to methotrexate or Cellcept. not a problem with NSAIDS either. you should get your GI tract checked out as ulcerative colitis and Crohn's disease are part of the HLA B27 nightmare. DMARD drugs and TNF A drugs are used to treat it and the uveitis. Crohn's can have lung involvement in rare cases as it can share genetic markers NOD2 and CARD 15 with Sarcoidosis. I have also had many members get IOL's who are HLA B27 postitive. you MUST treat this stuff systemically or you will lose significant vision over time. you have gone way too long on just steroids. I speak from experience as I have only been treated by them and am blind in one eye and with damage in the other from disease and steroids. I am HLA B27 NEGATIVE but I do have IOL's and it took about 4 years after surgery to get the uveitis quited down. I would still get IOL's. ask Dr Wong about this. the key is getting the eyes quiet for three months prior to surgery and then using Durezol and steriod injected into the anterior chamber prior to implantation. then continue Durezol for two weeks afterward.

Wish you the best,
\mike