Have anyone out there had vision problemd associated with this disease. I have started lately and am very disturbed by this. My sarcoid is coming back with a vengeance after tappering off chemo.
Thanks
Karen
Have anyone out there had vision problemd associated with this disease. I have started lately and am very disturbed by this. My sarcoid is coming back with a vengeance after tappering off chemo.
Thanks
Karen
Hi, I too have vision problems. I went for a regular eye exam in the summer and told the dr. that my eyes were bothereing me. He did not do any dialations or drops. Just a regular exam. I knew something was not right though. Then my sarcoid in my lungs became very active. I went to see a eye specialist who did tests. My eyes were affected. I had to use steriod drops for a while. I am on prednisone every day now also. The way it effected my eyes is any bright light was horrible. I could not filter out the light and the glare from inside lights also bothers me. It is better now but I wear sunglasses when it is bright. There are different things it can do to your eyes. Go see a specialist to get a full exam. You may need drops for your eyes. I see that you were on chemo. My doctor has said that he wanted me to try remicade. I have read all the side effects from it and it scares me. Right now I am on steriods only for the first time since being diagnosed 4 years ago. I am having a hard enough time with those side effects. How has the chemo effected you? Thanks, and good - luck, Cathy
I was disgnosed more than 2 years ago and have experienced the same sort of vision problems. I was seeing my opthamologist nearly every 6 weeks for an entire year for reoccurrences and he'd always put me on prednisone drops until the sypmtoms subsided. The last time I had uveitis was over 6 months ago and hopefully, I won't have any more flareups . . . at least in that area.
Stay strong.
Cheryl
The symptoms that you speak of one red eye and sight sensitive is a common symptom of Sarcoidosis . My advice from personal experience is to always have your prednislone eye drops in the fridge for emergencies but always go to the hospital to be checked.
My first major attack nearly cost me my sight. It is not to be treated lightly.
I am having eye problems also. The vitreous material increased in my right eye and I also got uveitis in the same eye. At one point my vision became very bad. This happened 2 weeks after I was diagnosed with sarcoidosis. I am still on the prednisone drops every 3 hours. The eye doctor also increased the oral steroid dosage I was taking for pain and inflammation in my leg and ankle area so it could clear the problem in my eye also. My sight is fine now, but I am very nervous about it. The vitreous material can cause pulling at the retina and cause it to detach.
It is very scary for me because I do not have the use of my left eye because of a detached retina that failed to reattach after 3 surgery attemps. This happened a year and a half ago and my doctor is wondering if it was sarcodosis that affected the left eye. I am working with only one eye. It's not easy.
If you see any changes in your eyes however slight go immediately to the eye doctor.
Hey. I'm currently 23 years old and have had sarcoid since I was two. I've always had vision problems from it. I've been on prednisone, methotrexiate, and cyclosporin for a long time now. I know how it feels to lose your vision to sarc. I've been blind three times due to sarc itself or related treatments. There are some tricks to it, so if you'd like to talk just e-mail me at allenk007 at yahoo.com. Beyond that, I would say don't give up. It can be disheartening. I personally, love to read and am a very visual-oriented person; but you can still enjoy things and with the right doctor regain your sight. Good luck to you.
How did you find the right doctor? I have no insurance, no job, so I go to a clinic that just has me sit, and sit and sit through numerous visits with an opthymologist. Constant use of eyedrops, and only two right now, but I can't see out of my right eye, and I can tell the left one is trying to lose its sight. I am told that finding a good for this would be totally out of the question if I have no job or insurance. My mother is totally freaking out because she does not know where to go to find the right people to help me, and she can't affored to put me on her insurance.
I just don't know how to get the fastest and best for the price of not being wealthy, financially. I live in St. Louis, Mo.
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