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Serpiginous Choroiditis

KevinG
1 Recommendation

Any one know of a good doctor in or around Vancouver BC Canada?

Explore topics in this discussion:

Retinal detachment Choroiditis Imuran Cyclosporine Stem cell transplant Avastin Suicide Azathioprine Chemotherapy Prednisone Ambien Depression Stress

23 replies

everett

kevin,

i don't know about vancouver but i was successfully treated by dr. douglas jabs (who is soon to relocate to new york) at johns hopkins university's wilmer eye center in baltimore, md. you could call wilmer and most likely receive advice on which doctors in your area are good for it. good luck!

Clinical Office:
The Wilmer Ophthalmological Institute
Division of Ocular Immunology
600 North Wolfe Street
Maumenee 119
Baltimore, MD 21287
PHONE: (410) 955-2966
FAX: (410) 955-0629
e-mail: djabs@jhmi.edu

everett

mannan15

I still remember the horrible morning when I woke up to find out that "I can't see with my right eye". Before that I never had any health problem. I was in India at that time 23 year old. Went to many doctors wrongly diagnosed many times, given wrong medicine.

Year 2001 It effected my left eye, luckily it didn't effect my center vision. I came to USA in September 2001, then I was diagnosed with Serpiginous Choroiditis. I was on Medicine to suppress my Immune System for one year. After medication my eyes were stable for six years. My doctor was very confident that I have been cured. Then, again last week came the bad news .

Now I am back on medication again....

I will write more about me.... thats all for today.

-Mannan

mannan15

Everett,

I am glad to hear that you have been successfully treated. I also visited Dr. Douglas Jabs for his advice but took treatment under Dr. Stuart Noorily of Retina Associates, Teaneck, NJ. I was under medication (I don''t remember the name of medicine) to suppress my immune system for one year. Avery thing was going fine for 5 years. Doctor was confident that I have been cured, but my bad luck Choroiditis re-occurred last week. I think treatment has improved in last four years. Now I have to take Avastine injectable ($400/injection) every month to block the inflammation. I am also taking PREDNISONE.

Everett, could you please write a little about treatment, like what medicine you took and how long you were on medication.

Everytime I hear a successful treatment story, it give a new hope.


I will try to keep you guys posted on the progress of my treatment.

-Mannan

hellokitty

Hello! I just found this website, but it's late and I have to go to bed soon (I wake up @ 2:45 am).
I'm not too sure how this discussion board works yet---so if I posted in the wrong place--sorry.
I just found out that I have serp. 2 months ago. Its been a whirlwind---8 doctor's appointments in 8 weeks. Originally, they thought it was choroidal osteoma, but the cat scan showed no bone, blah,blah,blah...2nd opinion from another dr....the serp. was diagnosed. 6 day pack of oral steroids calmed the inflamation. Then my next dr. appt. wasn't supposed to be for 5 weeks. After a few weeks, and after bumping into a couple of walls and shelves, I looked at my grid and noticed a big new 'grayed-out' area. I got in to the dr. the next day & this time he gave me the shot in the eyeball! (steroid) I wasn't expecting that so quickly---something I thought I would have to deal with months or years from now. I only have serp. in the right eye. Left eye is perfect 20/15 vision. So, with the left eye being so good, I never really knew how bad the right one was. I thought I was just getting old and needed glasses, until one day I closed just the left eye and realized how bad just the right one was. I pretty much freaked out and made my first dr appt that day. Now here I am two months later. My outlook on life has completely changed.
That's another whole story. I've kept a pretty good sense of humor about the whole thing so far.
But still get angry about it all at times. Oh well. Gotta get to bed!! Good night!

everett

Dr. Jabs has left Johns Hopkins University / Wilmer and is now here:

Douglas A. Jabs, M.D., M.B.A.
Professor & Chair
Department of Ophthalmology
Mount Sinai School of Medicine

I went blind in my left eye a few weeks after my 30th birthday. My initial doc at Georgetown University Hospital failed to diagnose me and, baffled, told me we'd probably never know what was wrong and essentially told me "sorry, go home." He didn't even tell me the blindness wasn't temporary until I asked him directly how long before it cleared up. He groused when I asked for a second opinion from Hopkins, saying "those Hopkins guys all think they walk on water." He grudgingly told me to talk to Dr. Jabs.

I went to see Dr. Jabs and one of his associates diagnosed me correctly within the first ten minutes of my examination. I believe I would probably have more of my vision today if I'd gone to Hopkins in the first place. The lesson here, in my opinion, is: 1) always listen to your instincts if you're worried about your doctor's advice; 2) never settle for second-rate medical care; 3) never take your health "lying down" ... it's your body, and you have to be your own strongest advocate because nobody else will; 4) never give up; 5) don't worry about the cost (worry about that later, besides, most hospitals will have special provisions for "charity cases" without adequate insurance or ability to pay).

I can't tell you all how sad it makes me to speak to a Serpiginous sufferer who is resigned to his fate and just goes blind because they're too helpless to seek proper (or better) treatment. Fight, damn you all! Fight it with everything you've got. Be brave. Be resourceful. Find the right doctors, the right treatments. Don't give in.

The first inflammation caused me to go completely blind in my left eye, and this subsided naturally after about a year and the scarring left me with a permanent blind spot in the upper right quadrant of my vision. By the way, the Georgetown doc told me I would not recover any of my eyesight. He was dead wrong. I wore an eyepatch for a year but gradually it came back and I just had the one blind spot.

I was told at Hopkins that I wouldn't be treated with meds unless it attacked my right eye as well. The docs were not immediately certain that SC was what was wrong with me, because I'm unusually young for the disease (I'm 35 now). I received monthly "monitoring" checkups and I forget how long exactly it was until it struck my right eye, maybe as long as a year?

I was treated with Prednisone immediately after they found an active lesion in my right eye. This was to stop the inflammation right away before it progressed into my field of vision (it was just beginning, and was off to the side). Dr. Jabs briefed me on treatment options and recommended an aggressive campaign of Cytoxin, essentially chemotherapy in pill form, to calm my immune system. I was told of the dangers, everything from sterility to bone necrosis to death. I decided on the spot that being dead was preferable to being blind, and I opted for the Cytoxin, which I was told had a 75% chance of success.

I remained on Pred for the first six months, and on the Cytoxin for 18 months. My blood and urine were monitored weekly to make sure my immune system was lowered but didn't crash outright (or climb back up too high). I took Calcium supplements and Bactrum, an antibiotic, to ward off secondary infections which could potentially have been deadly. It was one of the hardest experiences of my life; it was terrifying and miserable but it worked.

The Pred gave me zits and more body hair than I had before, made me eat two large pizzas and still be hungry, made me foul-tempered and prone to angry outbursts. It's an ugly drug and I don't understand how people can stay on it for longer periods of time. Nevermind what it can potentially do to your internal organs. I think anyone whose doctor is using Pred as the sole form of treatment isn't doing enough for his patient, is probably too cautious.

The Cytoxin, frankly, was easily to live with. It mostly made me weak and tired. The kind of tired where you get a full night's sleep and still wake up exhausted. I worked at my fulltime job during this period and it was all I could do to make it through the day. I also often had trouble sleeping, and was horribly nauseous in the mornings and spent the first couple of hours of the day retching. I personally think medical marijuana should be prescribed alongside Cytoxin but Dr. Jabs and I didn't agree on this one. I took Ambien to alleviate the sleeplessness and it was a good drug but addictive and to be used only sparingly. The Cytoxin also weakens you because it dampens your apetite and you forget to eat meals. I went from gaining 25 pounds on Pred to losing even more on Cytoxin. I highly recommend Cytoxin as a weight loss program (just kidding!).

Both drugs and the stress involved made me hyperemotional. At times I would cry for no real reason, I would get depressed and sometimes despondent. However, this was usually fleeting because I am a naturally happy person and I firmly believed in the value of keeping up a positive morale during treatment. I felt I had no choice but to believe I was going to succeed, that to believe otherwise or succumb to doubt or real depression meant that my body would accept defeat and I would be doomed to blindness and eventually suicide because I will not accept blindness as a way of life. In a very real way I felt I was fighting for my life, not just my sight.

My family lived in another state, I relied mainly on a few close friends and their good cheer to keep me going. It was one of the hardest things I've ever done, and toward the last couple of months I was so exhausted that part of me wanted to just die. Luckily, I kept the perspective that the light at the end of the tunnel was near, and my weekly lab tests were validating that belief. Every positive checkup was a milestone and I'd go eat at Burger King afterwards as a treat, a guilty pleasure.

I'm kind of losing my focus here, but I guess the point of the story is that I made it through and I'm not blind (only a little). Hopkins and Dr. Jabs saved my right eye, and as far as I'm concerned, my life. I live with the nagging fear that the disease will one day come back, but also with the hope that I'll be one of the rare weirdos who kicks the disease for good on the first go-round. One thing is for sure, the first time I notice anything funky on my Amsler Grid (I keep it on the fridge), I'm running to Dr. Jabs.

As a postscript to this story, I am very interested in starting up a website and research foundation for Serpiginous, and I would encourage anyone who wants to contact me about this or just to tell me their story, etc., to contact me.

pam4

Hi Everett,

I have been doing research on this topic and I came across this website and your comment to Kevin. Would you please be kind enough to tell me what exactly you have been treated with. I know you said your treatment was successful. Could you please tell me more.

Thanks!

Pam

everett

hi pam,

if you scroll through my previous posts on this thread it's all there, but the short version is that it was a combination of prednisone and cytoxin over a period of about 18 months. email me if you want at everett1 @ gmail.com if i can be of help.

nikky

Hello,
Has anyone heard of Dr. Janet Davis at Bascolm Palmer in Miami? I had a retinal detachment in my right eye in 2006. It left me 90%blind in that eye. I can still see light and movement. I began to lose sight in my left eye 6mths later. I was sent to Dr. Davis. Dr Davis diagnosed it first as Hystoplasmosis. It did not follow the Hysto trend. Now I have be diagnosed with Multi-Focal and Serpiginous Choroiditis. I have been on Predisone (60mg), Cell-Cept, and Cyclosporine. The last drug put me in the hospital for high blood pressure and numerous other conditions. I currently have limited vision in my left eye. Perhaps 40-50%. I am very interested to learn more about others with this condition and other medications used to stop progression. Please feel free to contact me at nrgustorest@comcast.net.

keerti

hi mannan .

it's keerti from delhi.india.my best freind is suffering from Serpiginous Choroiditis from MAY2007.we have like checked almost all doctors in delhi.first few were not able to diagnose it properly.have to do lots of blood test .x ray's and all ,and finally at the 3rd place we got the diagnosois ,buit uptill then right eye central vision was effected and ONLY steroids started in delhi .
AS THEY ARE THE ONLY MEDICINE TO STOP IT BUT NOT TO CURE IT.AS THERE IS NO CURE OR THE REASON KNOWN IN THIS WORLD.
then somebody told us of shankar nethralata chennai.we went over there on sep 2007and steroids with immunosppressive medicine were started by the guidance of Dr.J.Biswas.he is a good and expereinced doctor in uveitis fieldbut when the steroids were decresed to 10mg daily it has reoccured twice.on forst reoccurence same medicine with high dose was started but second time when it occurred on left eye but not in central vision doctor have added cyclosporin 300MG daily with PREDISOLONE. which he is taking from last 15 days.but atill we don't know how things will come when steroids will be minimised again???

then i came to know about this site and i want to know is this is the only form of treatment or i should say testing like incresing .decreasing increasing available,and is there any good form of treatment available in USA

I DON'T WANT ANY STONE UNTURNED TO MAKE MY FREIND'S LIFE NORMAL AGAIN

SORRY FOR TROUBLING YOU.BUT THANKS FOR READING THIS

Charlie2

Dear Sir,

My husband also has the disease and we finally found an exceptional doctor in California. He practices at the Jules Stein eye institute at UCLA. His name is Dr. Gary Holland. I am sorry your friend is going through this. It is a horrible mysterious disease. My husband has had it since May 2006. If you do a search online for Gary Holland you can read about him and find out where to go and call.

mannan15

Hi Kirti,
I was from Delhi too suffering from same disease as ur friend, I was also advised to go to shankar nethralata they gave me steroids.... doctor told be I am cured .. but inflammation re-occurred after 6 months.
In usa I was on 250mg/day Cytaxon for a year..I was fine for 5 years & my doctor was very confident that I am cured, then again bad news came... this time doctor advise me take Avastin injection, So I am on Avastin injection for almost a year, it seems it is helping me all scars caused by inflammation gone now & inflammation has not occurred since then. I believe Avastin is better option than Cytaxon becuase it has less side effects.
The lesson I have learn so far from my ordeal is don't believe if your doc says you have been cured, keep checking your eye regularly, the key is seek treatment as soon as inflammation occurs, it as possible to undo the damage if immediate medical attention is given.
I will advise you to ask your doctor about Avastin treatment.
If you want more info please let me know my email address is mannan15@gmail.com, I will be glad to help any way as possible,
-Mannan

Sneha

hi,
i just came across this forum and i think its wonderful!
i am from india and suffer from serp. chor. for the past three years.
i was in bangalore and got my first treatment from Dr J Biswas at shankar nethralaya in may 2005. My right eye was affected. it was the same treatment that keerti's friend had been adviced. Unfortunately, even for me it recurred again in Nov 2005 in the left eye. Since then I was under the supervision of Dr Padma Malini from Narayana Nethralaya in blr. I took the Azathioprine Predinisolone treatment again frm dec 2005 for 10 months. I regularly followed up whenver I was called for. I was also made to believe that finally my condition had stabilised. But unfortunately, in Nov 2007 again it recurred in the left eye. But this time around a new line of treatment was proposed by Dr Malini. I was put on anti tuburculosis therapy (ATT)along with predinisolone. i was told that this will ensure that the rate of recurrence is reduced.
I am currently on ATT, just hoping that it helps. the central vision of my right eye is damaged and I just hope that i can prevent it from spreading to the centre in the left eye.
Please feel free to mail me at sneha.jain.85@gmail.com in case you guys need any help or need Dr. Malini's contact details.
- Sneha

mannan15

Hi Sneha,
Did your doctor explained to you, "how ATT will help & it side effects"? I will suggest you to ask your doctor about Avastin, I am not saying Avastin is cure, but in my case at least it healed & prevented inflammation from becoming permanent scar.

-Mannan

Sneha

Hey Mannan,
will surely talk to her bout Avastin.
am not too sure bout ATT side effects and honestly i am so desperate now that i dont care much to ask doctors..am 22 and live alone...so its quite an ordeal on its own!!!the Steroids and immunosuppresives havent left me with any side effects i can ever imagine :D!
but you serious when you say that the Avastin helped reduce the scars that have already done the damage?I am just thrilled to know that there is any hope of making things better with my right eye!!!
thanks a tonne :)!

nikky

Hello Sneha,
I have NEVER heard of Avastin. I have been diagnosed with serp for over 1 year now. Is it
in the US?

Nikky

keerti

hi mannan and sneha,

sorry for not replying you.life was in a fast forward mode for quite a some time.as i have told in my previous comment it reoccured in jan 08 in another eye,and doctor at chennai has given a new medicine cyclosporine-150mg/twicw a day,quite expensive but effective with imuran and wysolone .we were expecting good results with that,but bad news followed as by reducing cyclosporine to 50mg twice a day in 1st week of may08,it reocurred again in mid of may08.Now again it has been incresed to 125mg ,two times a day.
it's really disappointing and tiring to see, coming back to zero again with so many effrots.it's being one year now from april07 and not once medicine has stopped.
This increase,decrese,increase sort of treatment is really very tiring to take,it's living on the edge.
If i see people doing adventure sports or some thing risky,and saying this is true fear,then i smile & say by myself no living with rare disease and fighting it on daily basis is to true fear to live with .
but why to cry upon ,if we have no option then to fight.
and use this energy to win.
"Darr ke age hi jeet hain"

i read about avastin in your comment ,and called our doctor,he said it's also available in india now,but they give it in complicated choroiditis ,when some new nerves get developed in the unactive scarred ares or some blood comes out of those scars.can u please ask ur doctor is it the scenario.as u have told-scars caused by inflammation gone now,by the use of avastin ,is it that those scars have healed or they become dried? as it becomes with imunno-supressent and steroids also.and vision is improved ?i'll be highly thankful to you.
and what about eye transplant is there any hope in this case ?

And regarding sneha comment -About ATT,he said my friend has not any signs of TB (chest x-ray,montose test,quantiforrone test all have indicated the same)so they will not start that ATT,as it is itself complicated and time taking . is it so ?

i'm really hopeful for some positive replies.

please u can mail me also at keerti_32in@yahoo.co.in

mannan15

Hi Sneha,
Avastin will not reduce the scar you already have, but it may heal newly formed inflammation & prevent it from becoming permanent scar, so there is a hope.
-Mannan

mannan15

Kirti,
Sure I will ask my doctor, In my case inflammation healed completely within 6 months & it didn't developed into permanent scar.

-Mannan

keerti

mannan,

thanks for ur prompt reply,it's really sounds good that scars have healed and not converted into permanent ones.it means that no problem in vision,as scars have healed not giving permanent ones.
what are the side effects related to avastin,please tell ?

if ur doctor confirm this can be used in simple choroditis also then we can also ask our doctor also.


with best regards
keerti

k_logan65

Your drug Avastin - Is it available in India. If so by wat name and who could be the distributor for the same. Do give us some more info abt the drug so that we cud get the same component - prob shud be in a diff name out here in India. But can it also cure scarrngs.. Dont think so...

I guess in AIIMS, Delhi, they have successfully done something like a Stem cell transplant. Prob if the same cud be done to the dead cells caused due to scarring in Serp Choroiditis, they cud heal the scarrings at least. Also I hear, that research work is on for possible retina implants, though unsuccessfully. Lets hope this will take a good shape in the days to come. Anybody staying in delhi, cud get in touch with AIIMS and confirm the same.

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