A dash of Pepper…

…with a splash of Mint

Posts Tagged ‘Iritis’

When shit happens..

Posted by Pepper on October 7, 2016

I’m not sure from where to begin. I might not make sense, but I know I need to write. The past few weeks have been such a roller coaster.  I had mentioned an eye infection in my previous post. Sadly, what we thought was an infection is actually a disease called Uveitis. I ended up having recurrent inflammation in my eyes just as I tried reducing my dosage of the steroid drops. The moment I try to taper my dosage, my problem is back!  I’ve seen several ophthalmologists in this time, and while my diagnosis has been confirmed, the approach to treatment seems to differ slightly. I’m still trying to grapple with what has happened to me and cope with my fears. Before I talk about other things, let me present some fun facts about this disease.

  • Uveitis is an auto-immune disease. I think I know enough about ‘auto immune’ problems thanks to Oregano’s kidney failure, which like you can guess was also caused by an auto immune problem. Auto immune disorders occur when your own immune system begins to attack and destroy healthy cells and tissues by MISTAKE because it stupidly believes the tissue is foreign or infected. If I could, I’d scream at my very idiotic immune system and ask it to behave itself. Like seriously dude, can’t you learn to distinguish between good and bad cells? Please stop attacking my eyes for no reason. Leave them alone.
  • I have bilateral Uveitis. Which means, it has struck both my eyes. This is bad news.
  • I have Anterior Uveitis. Which means, it affects only the front of my eyes. Yet. This is good news. Posterior Uveitis comes with many more complications.
  • In about half of the cases, Uveitis is not an isolated disease. It is commonly associated with the presence of a gene called HLA B 27. Diseases that are associated with Uveitis include ankylosing spondylitis, rheumatoid arthritis, Behcet’s disease, sarcoidosis, amongst others. Which means, I have to accept I am vulnerable to a host of nasty illnesses and be very vigilant. Fun, right? As of now I am praying to the Gods that my Uveitis is idiopathic.
  • Even the treatment for Uveitis comes with it’s own complications. The first step in treatment is the use of steroid drops that go into the eye. However, constant usage of steroid drops is not a sustainable long term solution. Persistent usage of steroids in the eyes leads to glaucoma and cataracts. As of now, my eyes are heavily dependent on the steroids and I am using them 6 times a day! Have been doing so for the past several weeks. When I tried reducing my dosage earlier, my attack was back with a vengeance and I went back to using the steroids 6 times a day. I am going to start tapering it *very slowly* from next week again and I pray that I don’t get hit by the problem again.
  • In some cases, the steroids are unable to control the problem. You then move on to immunosuppressive drugs that have to be taken life long or for years on end before you go into remission. And in some stubborn cases of Uveitis, even these drugs don’t work, in which case you welcome the beautiful methotrexate. Methotrexate is a common drug used in chemotherapy to treat cancers. We all know the side effects chemo drugs come with. I know I am talking about the worst case scenarios, but since I have not been able to break out of the steroid cycle so far, who is to stop my mind from running away to these lousy possibilities.
  • Even if you manage to treat one episode of Uveitis., odds of it reoccurring are very high. In most cases, it does reoccur. Sometimes after 2 months. Sometimes after 2 years.
  • And finally, the stats that give me sleepless nights. “It has been estimated that uveitis accounts for about 10% of the visual handicaps in the western world and up to 15% of all cases of total blindness in the United States. Legal blindness develops in at least 1 eye in 22% of all uveitis patients and in about 23% of all who require intraocular surgery. Visual acuity (VA) loss to worse than 6/18 in at least 1 eye occurs in 35% of patients with uveitis”

Okay, so now do you hear me say WHAT THE HELL? A QUARTER of the people go blind?? ONE THIRD go partially blind?! Dear Lord, please help me. I know I have been acting like a complete idiot. I’ve been paranoid to the extent of being insane. I always considered myself to be a laid back person when it came to dealing with illnesses that struck me. But I guess it all changes when you consider the possibility of sight loss. I’ve been waking Mint up in the middle of the night and telling him I don’t want to go blind.

My zen and calm statistician husband tells me he doesn’t agree with those stats. He says there are too many variables they may not have accounted for. What was the purpose of the research? What was the sample size? At what stage of the disease did those people get treatment. Etc. Etc. In short, he thinks stats can be twisted to suit your agenda. He thinks I am being silly by worrying about sight loss at this stage. For all we know, I might even be able to wean off the steroids this time (3rd time’s the charm?) and never have to face this nasty problem again.

On the other hand. I may not recover and may be stuck with this dreadful thing for a long time. I mean, I don’t really trust my luck to be honest. This is a rare disease and affects only about 0.38% people in the world. That means the odds of it happening to people are less than 1%. And of course, I had to fall in that 1%. I told Mint I want to scream and say ‘Why me?’. He asked me who the question was directed at. Um. Good question. The truth of the matter is that there is no explanation for such things. The universe is governed by randomness.

Like I have mentioned, this isn’t fun to live with. When my eye is ‘Active’, I hide from all possible sources of light. I feel rather silly to be wearing my sunglasses at home and other closed spaces. I go about telling people I have an eye problem even when they don’t ask. Just because I feel stupid wearing sun glasses in an already dark room and feel like I owe the world an explanation. Using the drops every 2 hours is a pain. There are days when I pray for nightfall because the sunlight during the day is too unbearable. Yes, a lot of vampire jokes have been made by Mint and Oregano.

What lies ahead? Well, I have blood tests lined up for tomorrow. I will have the reports by Monday. I will also step down from using the steroid drops 6 times a day to 4 or 5 times a day from the next week. I hope to be able to taper the steroids every week. If I am unable to wean off without a flare this time, then my ophthalmologist is going to refer me to a rheumatologist and we will consider other oral immunomodulation therapy. I hope I don’t need something strong to shut my immune system up.

Meanwhile, until I know what’s going on on, I repeat to myself. I will be able to wean off the steroids this time.  I will be able to wean off the steroids this time. I will not have a recurrence. I will not have complications. Deep breathe. Repeat.

PS – If you would like to read another patient’s personal account of Uveitis, go here. I could relate to a lot of what has been said there. He/she has really voiced my fears and emotions well.

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