Sarcoidosis in the EYES since 15 years old!
Posted , 3 users are following.
I am now 24 years old and I was first diagnosed with sarcoidosis at the age of 12. I had it in the skin, where it would get red with lines and it looked very odd. I would never wear shorts and stuff because I was shy to show my legs. Finally it went away. During highschool my eyes started having problems. I had glasses in general, but I would go in for eye checks. One day they checked the back of my eye and found out that I had needed to get the back of my eyes checked. My eyes use to get very red and would be in pain. I was sent to an eye specialist, and from there (till this day) I was sent to a retina specialist. They found out that I had inflammation in the front, middle and back of my eye...also known as uveitis (and another name). This causes floaters, sensitivity to light, severe eye pain, redness and could cause blindness if not treated. (Apparently, there isn't any cure, but there is a way to keep it controlled). Finally, my specialist put two and two together and figured that the sarcoid is in my eyes. Therefore, I have been on eye drops, prednisone and methotrexate (on and off) for years. I am terrified of what the future holds. I do not want to lose my sight, so of course I am taking these meds, but these meds have severe side effects. I've had weight gain, and loss, acne and much more. What else can I try? Natural remedies? Can anyone relate at all?.........
1 like, 3 replies
rachael88657 Ruby54321
Posted
ive had sarcoidosis for over 10 years on my lungs but it has spread to my sinuses and I am convinced it is now attacking my eyes as I keep getting horrible ulcers on the inside of my eyelids. I am being fobbed off by my GPs at the moment but I am going back as the eye drops given are useless as I knew they would be! I don't however use steroids simply because my previous GP and I discussed the pros and cons and decided it would be more detrimental to my health if I took them as I am not a slim Jim and cannot afford any more weight gain particularly when I have flare ups and it attacks my joints! I have lived with this for years and been told that actually the patients know more about this condition than the Drs as it is never the same in any 2 patients! If you are able to manage your condition by listening to your body and can keep sarcoidosis under control which is the path that I have opted for. I also see a qualified herbalist who has helped enormously as I have terrible reactions to medication/drugs. I also know that mine is very seasonal autumn and spring it's like clockwork! I know
I have to pace myself too as fighting it tends to make flare ups worse!
Hope this helps you in some way, there are plenty of us out there who may well have other advice for you and I have had several interesting chats here.
hang on in there
rachael
Ruby54321 rachael88657
Posted
Thank you for your reply! If you don't mind me asking...how old are you now? You mentioned you have had sarcoid for over 10 years.
Honestly....you are right about that .....patients know more then doctors. Are there any tips you can suggest...or foods...or exercises that may help? Could we keep in touch.... I really don't know who to talk to who can understand!
- Ruby
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rachael88657 Ruby54321
Posted
Am quite happy to keep in touch Ruby. I'm now 57 positively ancient! The condition in my eyes is Blepharitis but the consultant told me it has everything to do with sarcoidosis. Currently the "treatment" is eye drops 4-6 times a day heat bag to be applied but I've not done that yet and fish oil capsules or flax seed oil very day. No drugs thankfully! Hope you are ok.
rachael