Eye inflammation/cataract due to sarcoidosis
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I have been diagnosed with pulmonary sarcoidosis in 2012 based on symptoms and pulmonary x-ray. Now, I've developed eye problems (I have cataract in the right eye, in incipient stage, and inflammation in the left eye - corneal inflammation). My eye doc told me that it is quite strange to develop cataract at 30+ years old. This disease is usually affecting older people. He believes that cataract developed in my case due to recurrent inflammation inside the eye, which can be related to sarcoid, actually untreated sarcoid.
My ACE levels have been high for more than a year now, so sarcoidosis has probably been active during all this time, causing inflammation within the body. My pneumologist did not put me on corticosteroid drugs because: 1) I had TB back in 2009 and she was afraid that anti-inflammatory meds will reactivate that, which will be terrible; 2) my ACE levels were only slightly higher than normal (e.g. 31 - 33 when the normal range is between 21 and 27, as far as I can recall). As ACE levels rose from 33 to 39 within several months, my pneumologist said that sarcoid exacerbation won't solve by itself and gave me a corticosteroid drug (prednisone) for a short period. We'll see how it goes.
Does anyone has inflammation-related eye problems due to sarcoidosis? If yes, do you take any eye drops or drugs? My eye doc told me to go for a checkup after three months and we will see if treatment is needed at that time. Anyways, it is quite strange that he did not give me any treatment to reduce inflammation inside my eyes and slow down the progression of cataract.
One more thing: does anyone of you have low grade fever? A few days a week, my body temerature rises, ranging between 37-37.3 degrees Celcius (98.6-99.14 Fahrenheit). Is this normal in sarcoidosis, even if sarcoidosis isn't active?
I appreciate your help and any details you can provide!
Have a nice day all of you,
Magda
1 like, 21 replies
tangles magdafloasiu
Posted
Magda
Back to your question about positive identification.
My brother back in the 1980's was in hospital with kidney issues. They could not identify the cause of the problem. Some of his conditions were similar to me so I suggested they research sarcoid. His lungs were clear so they dismissed that. I insisted that there were too many of the same symptoms.
They eventually took urine sample and past it through very very very fine gauze. After several days straining they found a soft gel like crystals in the bottom. Eventually they agreed that they were granuloma and yes he had sarcoid.
I don’t know if this would be common to all of us but perhaps this may be another way of confirming sarcoid new to current thinking. If this is the case then confirmation would be that much easier for people who believe they have sarcoid but do not want biopsy procedures. As these are intrusive in comparison.
It may be common to all suffers or perhaps only my brother. I now have an enlarged spleen...I wonder if this has been caused by it dealing with the granuloma in the blood system? Then passing it on to be treated as waste through urine?
This may start a new chapter in investigating sarcoid.
Tangles...Phil
magdafloasiu tangles
Posted
Thank you for your suggestion. However, I don't think that my doctor will consider it as a method to diagnose sarcoidosis, especially that I have pulmonary sarcoidosis. Additionally, they cannot do convetional biopsy in my case because my vital capacity is at half and i desaturate a lot. We have no special medical equipment, so they cannot perform surgeries on people with serious pulmonary conditions.
Anyways, I will talk to my doctor and suggest this form to see if she accepts to try diagnose my condition this way. I'll see what she says. Thank you all again for your input. I wish you all the best.
Take care,
Magda
frustrated61 magdafloasiu
Posted
Hope you're feeling well...as well as one can. I just got out of the hospital from a 5 day stint due to my breathing. Remember talking about the capacity of our lungs. I was dipping into 58 then back to 90 then down to 78....well it did catch up to me. I finally kept passing out. The ER doctor was very concerned because it wasn't getting any better after a few different treatments.
I ended with a CTscan to find out that the sarcoidosis in the lungs is running wild. The doctor was concerned that it could be metastasizing throughout the lungs more so than the first time I was diagnosed.
I kinda figured that this might be the case but was in denial. I just didn't think I could go through what I had gone through when I first found out I had sarcoid, 10 years ago. So, I had to have a few studies before they would release me and I'm on oxygen which is very depressing. I just never figured I'd be disabled in this manner.
I have always taken care of myself...excercise, eat right and sleep well. I guess no one expects to be hit with anything that would deplete their quality of life. I know, I sound a bit like I'm feeling sorry for myself...guess in some ways I am...but I am also a realist and know if I have a negative attitude it can affect the outcome of my treatment.
I told the doctor flat out that I will NOT go on steroids again. The secondary issues were horrible and I'm still dealing with them. I will most likely go on methotrexate and hope for the best. That's all one can do! So, with all the said, any thoughts?
Frustrated
magdafloasiu frustrated61
Posted
frustrated61 magdafloasiu
Posted
Frustrated