For anyone who has BD and has had uveitis, are... - Behçet's UK
For anyone who has BD and has had uveitis, are there usually continuing issues or is remission common?
Hi there Rose, I lost my sight for three days with uveitis when I was first diagnosed. I am now fine.... I think prompt treatment really helps and I get the impression, on the uveitis front, remission is expected, but others may have different experiences!
Thank you for sharing your experience with uveitis with me. Glad you are now fine!
May I ask what treatment you were on? It is good to know it is possible to go in remission. Our doctors have never said it was possible.
So I am very interested in hearing from you and anyone else that have had a good outcome. God Bless
Hi Rose,
I've only had uveitis for 18 months or so now, so can't give a long-term perspective. But my experience has been: inflammation in the left eye, eventually leading to macular oedema. That was brought under control with a steroid injection into the eye. Although I hoped that would be my eyes settled for a good number of years, I then started getting inflammation in the right eye about 6 months later, which has also now led to macular oedema. I had a steroid injection behind (not in) that eye a week ago and so far it looks like the oedema is starting to go down.
I'm certainly hoping that after this I will be in a period of remission! But from what I have heard from Drs, could be continuing problems or could be several years in remission. Will have to wait and see!
I wish you well and everyone else with this issue.
Thanks for your input. Hoping for the best for everyone.
Hello,
I regret writing this, but the uveitis is recurrent and can return at any time.
Like I wrote before I suffer from uveitis, just do surgery to the eye, almost two months ago, and then suddenly turned uveitis - powerful - and only with prednisolone on the counter-attack that is returned to normal and I'm fine now.
All the best, Rose.
hi Rose,
if you notice any activity from uveitis please get to your ophthalmologist ASAP; nowadays treatment is very effective but the sooner you get treatment the better and you will notice something going-on long before the Dr's will be able to see anything from their side. Speedy treatment saves sight.
A lass, my uveitis episodes started 30 years ago when treatment was not as good as it is now; I have 96-98% loss of vision in my left eye and no central vision in my right; legally blind. If back then was now I would probably have most of; if not all of my sight, so please please please, do not ever delay, even if your not 100% sure; better safe than sorry.
I wish you and everyone who gets uveitis a good and speedy treatment plan.
best regards,
rosshi
Thank you for the advice. I'm glad I've always been proactive when it comes to my health and am under good care and being watched carefully. Hoping for the best.
Hi there
I had 2 attacks of uveitis within one month last summer. Maxidex drops helped.
Have been on Prednisolone since Dec 2012 and Azathiporine since Sept 2013 and have had no recurrence of uveitis. Very glad about that as it was so bloody painful!!
Seems all my symptoms are now typically Neuro BD.
Ashley
Hi, my 11year old daughter had uveitis & pressure up to 38 for 3 months this year.
The specialists checked her eyes 3 times per week and after 3 months, i think it was Infliximab started to work. Went back to normal in two days. We were so thankful.
Oh my, so sorry she is so young, I thought I was so upset with my daughter being only 21. Her doctor wants to start her on Infliximab but I am trying to balance her immune system before going on that because of the severity of this medication. How is your daughter doing now? It is such a strong drug I am in shock that they would use it on such a young child. Please keep us posted on her recovery. So happy to hear she is better. God Bless
Am quite convinced that i have uveitis flare when under stress
For sure, my daughter's condition always gets worst when she is under stress in fact that is how it all stared! You really have to take care of yourself and stay low key, that means no over exerting yourself by excessive exercising, stressful work conditions, even the sun should be in moderation, everything in moderation. Good Luck and God Bless
I had uveitis in 2007. Steroids for the shock treatment. Then switched to imurek. In 2012, uveitis recurred and i was given humira. In 2013, uveitis recurred and i was given steroids for a few weeks. Now i am back to humira. So that is the bad news - it recurs.
The good news is that i get diagnosed quite soon and the prompt treatments have been very helpful. My opthalmologist is very happy with my eyesight - at its worst, my left eye hd a vision of 15. Now it is 150 < i do not really know the denominator> but i can read really tiny stuff in the doctor's clinic. He says he does not have anything smaller for me to read.
My doctor makes it a practice to ask me how i feel and he takes his cue from there. He noticed that my eye condition correlates with instances when i tell him that i do not feel too well. He tells me that I, the patient, may know more than him as a doctor. My other physicians say the same thing, and they emphasize the importance of us being in tune with our bodies so that we can get prompt medical attention.
Good luck and all the best!
Hi Eliciasmom,
My daughter Jaida started with BD symptoms as a 5 year old so by last year being 10 she was on every medication only to have her eyes become involved. That is BD so meds work for some of us and with my Jaida it tool more. Infliximab every 8 weeks wasn't enough, now on 6 weekly and only having a few flares that we can deal with.
I understand what you mean by the amount and strength of these drugs, they are scary. My daughter was so sick and although the specialists felt every drug was doing its job she still needed Infliximab bad was started within 2 hours. I went for a walk by myself and had a huge cry. I was scared but I didn't want a vein to pop where we couldn't fix it.
Today Jaida is back at school of 25ml steroid a day with no puffy face or unwanted hair. Maybe still on way to many drugs for my liking but that's the way we have her in our lives. She looks beautiful. Now aged 11 she knows how far to push her body and the importance of sleep.
Good luck.
Uveitis started in my left eye 18 years ago i had it constantly for 10 years. I was on prednisone and had shots in my eye every 6 months saw retina specialists in LA at the Jules Stein institute you name it! I had groups of Doctors trying to diagnose me. I ended up with a cataract and thinning bones. finally i was diagnosed with behcets oh yay. Well when my right eye started to flare up the dr changed me to methotrexate that worked for a while then he lowered that a little and i was given remecade infusions with a lower dose of Methtrexate. After 10 years my uveitis was gone.I wanted to dance around his office!!! Its been clear for 8 years. It still aches when i'm stressed but thats about it.
As others have said on here, Uveitis can come and go - always be aware of any pain in the eye - even as simple as pressing lightly against your eyelid when your lid is fully closed will give you an idea of whether a flare up is starting, as soon as I feel any pressure /pain in my eye I go to the eye hospital. I have got to know when its flaring now , and my eye Dr told me NEVER to ignore it.
I have been free of a big flare up for about 2 yrs - but previously was plagued with it, being at the hospital weekly for about 4 months of the year over a 3 yr period. Its weird how it comes and goes.
Good luck with it. strangely I only ever get it in my Right eye.
