Eye inflammation/cataract due to sarcoidosis
Posted , 7 users are following.
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
morag7 magdafloasiu
Posted
I don't have eye problems related to sarcoidosis but I know its recognised as a "feature" of the condition in some patients. One of my friends used to work with a lady who had sarcoid-related eye disease so I'll ask if she can remember what eye-specific treatments she had.
Cataract in people in their 30s is pretty unusual but not unheard of. If nothing else when it reaches what they term ripeness (ie grown pretty huge) theres an easy procedure to remove it; but the medics do tend to wait till its advanced because they actually get better results.
Mean time I'd have said if nothing else you can always try over the counter eye drops that act to stop the eyes getting too dried out and sore as a result. They might not help but they certainly won't do any harm and might relieve some of the symptoms.
tangles magdafloasiu
Posted
Eyes are an issue as are many other health issues with this condiction but these become swamp by the medical staff as they all concentrate on lung condictions.
Eyes in my case were not major but dry eyes are common and a eye drop lubricant like polytears is good. Your eyes are more effected by UV then non effected people. Wearing sunglass is important as your eyes will actually get sundburn and hats also play a role here. Can not help you with cataract or eye pressure not aware of these issues.
Night sweats were common with me althought I can not give you any temps. It was always blamed on something else, it is only now that I realise that this was an underlying aspect to sarcoidosis.
magdafloasiu tangles
Posted
thank you for your quick responses. I'm asking all these questions, including the one relating to low fever, becuase I'm trying to figure out what I have. One doc says that I have sarcoidosis, the other one is almost sure that it is TB recurrence. The form of TB I had is a strange one - it is called nodular TB here and it forms nodules with TB infection inside the lungs. Because of this, I have no phlegm, so the disease cannot be diagnosed. The only way to diagnose it is to have a conventional biopsy, but they won't do it because my lung capacity is too low, ranging between 43-48%, and because my oxygen levels drop quite seriously when my body is undegoing stress.
I know it sounds crazy to try to figure out what I have, but I have been treated for all sorts of conditions since 2007 (alveolitis, idiopathic fibrosis, TB, and now sarcoidosis). Until now, none has found out what I have. I know I had TB because, back in 2009, a doctor broke my right lung during bronchoscopy and collected some liquid; TB test came out positive. As they said, "it was a suprainfetion with TB, as the liquid they collected had a strange color - it was brown instead of yellowish). I had TB treatment for 18 months, as the infection spread within my body when they broke my lung. After that, I felt really, really good.
I had no symptoms until last year, when I started to feel that something is wrong again. I'm feeling tired all the time and become dyspneic more often than before, and I have wheezing from time to time. I also had a cough with sputum (clear, thick sputum) for a couple of months, but it stopped by itself. So, I'm just trying to figure out what I have by simply correlating specific symptoms with the symptoms of other people suffering from sarcoidosis. Although I have good doctors, I feel that they are not paying enough attention to my condition. They are taking it lightly, thinking"oh, it's just sarcoidosis" or "it's just TB". What happens if I have both? Or if I have TB and take corticosteroid drugs instead of antibiotics? I've read a lot of things about both conditions, and even doctors confirm that these conditions can be confused quite easily. However, one thing telling me that it is sarcoidosis is the eye issue. Cornea inflammation and cataract are not related to TB. If I can also relate low fever to sarcoidosis (low fever is typically found in TB), I will probably sleep better at night
.
Thank you!
ailsa_june magdafloasiu
Posted
I did have eye problems and I know several of the members of the other sarcoidosis forums have had or have eye problems. Mine started just before my lungs went really bad. I was sent to the opthalmologist because I had a cyst like lump on the white of my eye towards the nose side. The opthalmologist thought it was just a corneal cyst but said that she hadn't seen such extremely dry eyes before and that it was this that was causing my extremely sore eyes not the cyst. She tried lots of different rehydrating drops but in the end she settled for Celluvisc 1% which are preservative free artificial tears. She said I had stopped making my own natural tears so should stay on the drops indefinitely. A couple of months after this I was diagnosed with systemic sarcoidosis but I never did go back to the opthalmologist. I just thought if she didn't see anything more that what she diagnosed then there was no point. I have to say the drops do keep my eyes from getting too itchy and sore but lately I've noticed I'm getting a sort of veil of floaters going across my vision which is a bit worrying but because I've had floaters in the past like everyone else gets I didn't do anything about it.
My ACE results were apparently off the scale but I have an excellent respiratory consultant who has worked miracles with me. Like you I was first diagnosed in 2012 although I believe I had the symptoms in 2011 but didn't go to my GP until I could hardly breathe and thought I had a chest infection. The rest is history.
I get low grade fevers too but usually there is something somewhere being tweaked by the sarcoidosis even though you think the sarcoid isn't that active. You have to remember that sarcoidosis is your immune system going haywire and attacking infections it thinks exists but in fact it ends up attacking healthy areas and the end result are granulomas. If the immune system is in fighting mode then it stands to reason that your temperature would elevate as this is what happens normally when your immune system is fighting infections and diseases. I have Sarcoidosis in my joints, nerves, lungs, skin and eyes and have been on prednisolone since being diagnosed. The sarcoid is much better controlled now but my consultant has told me that I will be on a maintenance dose of prednisolone for life as several attempts to come off the sterooid has resulted in the sarcoidosis spiralling out of control again.
Are they absolutely sure it was TB you had back in 2009 and was not possibly Sarcoidosis. It is quite hard for them to get the right diagnoses out of these two diseases. A lot of the forum members were initially diagnosed as having TB and even Lymphoma so it might be worth asking that question. Sarcoidosis can stay dormant and flare up at any time so it is possible you had a flare up in 2009.
I hope you get some relief from your sore eyes. Ask your GP if he/she has a list of local opthalmologists you could go to for help as they are really good at what they do. I have heard of cataracts appearing in sarcoidosis patients too but the opthalmologist is the person to see.
Good luck,
June
magdafloasiu ailsa_june
Posted
thank you so much for taking the time to reply. I have no dry-eye issues; the only issues with my eyes are inflammation and itchness and burning sensation, but the last two happen very rarely. I went for an eye checkup and this is how I've found out about my eye condition.
Regarding TB, I'm sure I had it, as the test had come out positive three or four times during three months. so I'm sure it was TB. I had a drainage tube inside the broken lung and they collected liquid several times; there were a few other "bugs" (I mean viruses/bacteria) but I cannot remember exacty what. I took all kinds of medicines, about 34 tablets a day, injections and intravenous treatment.
Thank you so much for shedding some light on the low-fever issue. Although I read about it, I wanted to make sure that real patients with sarcoidosis develop low-grade fever due to this condition.
I will also talk to my doctor once she's back (she's on holiday now) to ask about a good opthalmologist, although the one I've just seen is the best in my area. However, it's probably better to have a second opinion before freaking out
.
Thank you once again!
Take care
ailsa_june magdafloasiu
Posted
I'm glad I could be of some help.
Yes that sounds like a definite for TB no doubt at all. You poor thing you have really been through the mixer over the last several years. I can't start to imagine how bad having TB was or the treatment protocol and just to poke you in the eye you develope Sarcoidosis - really cruel.
Please make sure you try and get lots of rest because your poor body has been in fight mode since 2009 (or maybe even before). The one thing that sarcoidosis does is cause chronic fatigue. It's like an exhaustion you have never experienced before. I can literally fall asleep sitting up, I just can't help myself. It makes you see what the narcoleptics suffer! Also make sure you drink plenty water as your system needs to have good filtration for all the nasty medications as well as the toxins Obviously don't go overboard as too much is as bad as too little but make sure you are drinking your 3 litres a day. We all think we are but when we get down to checking it is usually well short.
The dry eye syndrome can cause the itchy burning sensation even though you don't realise that your eye surfaces are not being properly lubricated. It's like turning on a windscreen wiper when there is no rain. The windscreen gets tiny scratches and abrasions the same thing with the cornea of the eye.
I couldn't believe that my opthalmologist was telling me I had no natural tears when my eyes were watering just fine but best to see what your opthalmologist says because it could even be not related to sarcoidosis. The other thing I forgot to say was that you might also experience some photophobia (intolerence to light) because your eyes are affected by sarcoidosis so it might be an idea to keep a pair of sunglasses handy even when it's not sunny as they can help ease some of the discomfort.
I totally get what you mean when you say it is one thing to read about symptoms and another to suffer from them. The thing I always say is try not to freak out because stress makes the sarcoid symptoms worse but also try to remember that not all symptoms might be related to your sarcoidosis. Some can be medication related and some could be telling you that you have another possible problem. If you're unsure always check with your GP. Symptoms affect different people in different ways and it is good to touch base with fellow sufferers but always bear in mind how easy it is to blame everything on one disease.
Look after yourself,
Best wishes,
June
linda0307 magdafloasiu
Posted
I have Sarcd of the lungs,eyes,and skin I was diganosed with sarcd of the lungs about a year ago. Within 3 months it affected my eyes my eye specialist have me on eye drops every 2 hour and one every 4 hours although my sight is getting worse the drops help keep the inflammation down. My sarcd is spreading really fast and no matter what they give me it's only getting worse. I believe I have had this disease for years just wasn't diganosed and now it's at the last stages. I don't understand why your dr isn't given you anything for your eyes. The eye specialist says if not treated you will go blind and sometimes with treatment it can call blindness, Maybe you should go see another eye dr. hope this help
frustrated61 magdafloasiu
Posted
Anyway, I do run low grade fevers and since I've had sarcoidosis it's been that way. When I was diagnosed in 2005 by biopsy of the lungs and lymph nodes. Ever since, when I go to the doctor, they check my temp twice just to make sure they did it correctly. Also, as you know, my oxygen level is way out of wack, which I'm hoping it will be addressed w/i a week or so. That's from the sarcoidosis.
I hope your feeling better soon!
Take care
Frustrated
tangles magdafloasiu
Posted
Your eye condiction definately is dry eyes and you need a lubricant. There may well be other issues as well but you need polytears of something similar whilst you investigate your other eye problems futher.
Positive ID of the sarcoid does not have to be lung biopsy. Follows is a post I placed elsewhere a few days ago it may help.
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I come from Australia a bite remote from all of your other responses but prehaps I can help a little from my long term exposure to sarcoidosis. Based on my experiences, I am no expert and I am not a doctor. They believed I had Asbestosis based on lung Xrays.
Confirmation of the condiction was in 1984 then confirmed by a lung biopies and again confirmed in 2008 by bone marrow biopies. I believe a biopies is the only way of positive confirmation for your husband. I hope that helps with one of your questions as to how do you confirm this illness? I realise these are invasive but the result is conclusive.
Initially I was placed on steriods prednisolone at 20mg daily. After some time there was no benifit, they told me to gather my family around over Xmas. That was a concern to me. They then contacted their American associates who said forget 20mg jump him up to 60mg. Two years exposure to this finally fix the problem but you can not jump on and off prednisolone. It took two years to reduce the dose and take it off.
I still suffer from other issues from the illness but the lungs are fine and I have celebrated many Xmas with my family since then, thank goodness.
I want to start my own item to try and find out more about joint pain which has been a problem for many years now. As I am now getting older this has become a greater problem. I need to find out if there are any way of addressing these issues as there are many things left to conquor in my life and my joints are restricting me.
Whilst I can still catch the mighty marlin, I want to go back to scuba diving and swim with the marlin. Also I want to climb the Kokoda trail in Papua New Guinea in memory of my father who servere there during WW11.
I will have to be very fit to climb those mountain rangers.
tangles magdafloasiu
Posted
My point is you can have a bone marrow taken from the hip.
Whilst this is still unpleasant it is far less intrusive then the lungs. Especially with your TB complications.
You can have it with or without anasetic. I had it without and all went well in the procedure. They again found granuloma in my marrow, confirming my sarcoid was still active.
This was done in 2008 to research my enlarged spleen. This is now related to sarcoid so they left the spleen in, as whilst it was enlarged but it had stabilized.
magdafloasiu
Posted
thank you all for your input. You can't imagine how much this is going to help me! I will see another eye doctor and definitely talk to my pneumologist to see if I can have a bone marrow biopsy.
Thank you all once again!
frustrated61 magdafloasiu
Posted
Good luck!
Frustrated
magdafloasiu frustrated61
Posted
It's true that I realized that something was wrong, but I thought that I just need stronger eye glases, when BOOM: I have developed cataract in the right eye and corneal inflammation in the left eye, which will probably also lead to cataract if left untreated.
It seems that my eye condition is different from yours. My eyes lubricate perfectly, I have no stinging or burning sensation either. However, I do have itchy eyes, more sensitive to light than before. It seems that light sensitivity is common in many disorders affecting the surface of the cornea, including inflammation.
This is the reason why I started a new thread, mentioning eye inflammation/cataract. I've read that many of you have dry eye syndrome, but I wanted to check if any of you also have corneal inflammation or cataract. I wanted to see if I can relate this issue with sarcoidosis.
Anyways, thank you so much for taking the time to reply. I really appreciate it!
Take care,
Maria
frustrated61 magdafloasiu
Posted
As far as the inflammation and cataracts, yes...cataracts are pretty much to be expected with sarcoidosis. The inflammation is also part of sarcoid as well as sjogrens.
Just make sure you catch any dryness in time as mine got to the point that when I woke up, my lids were stuck to the eyeball and it really seemed to progress overnight. Anyway, it caused all kinds of issues with my cornea. Hopefully, that is behind me.
I hope you get relief!
Warmly,
Frustrated
frustrated61 magdafloasiu
Posted
After re-reading a few post/discussions, I started to wonder if you could also be suffering from sjogrens disease. Dry eyes are only one aspect of this disease. Just a thought.
Warmly,
Frustrated
magdafloasiu frustrated61
Posted
I really don't know what to say. I'll talk to my ophtalmolog when I'm going for my chekup. In January, 2015, I'll also go to see a specialist. I'll see what she says...Thanks a lot anyways...