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Hi Folks,
I know this blog has been dead for a while, but I thank those of you who have commented and I hope that this information can of somehow be of help or at least solace to some of you experiencing this horrible eye disease out there. There seems to be so little understanding of it and unlike other areas of the eye, it is certainly not getting needed attention as many ophthalmologists turn their talents to the more lucrative laser vision correction trade.
I wanted to write in a quick update: I tapered off steroids in early June of 2007 and continued using cyclosporine drops (a Restasis-type preparation made here by a local eye surgeon). The preparation is made because Restasis is too costly for most people living in Asia and this provides a preservative-free, generic solution for people to use. I'm lucky to have been in the right place at the right time as it costs me about US$30 a month.
Since trying this 'generic Restasis', I have been iritis-free for the third longest period in my life. Coincidence? Maybe, but I can't help noticing real changes to my eye: less redness and generally less pain, etc. Maybe it is a placebo effect or something, but I have much greater confidence in my eye health now, the pain has faded and I'm not worrying so much these days. Even as I write this I'm wearing contacts, something I have never had the guts to try before with my eyes being so sensitive.
There are two decent articles on off-label use of Restasis where you can find further information.
http://www.eyeworld.org/printarticle.php?id=2398
http://www.thyroid-eyes.com/topics/dryeye/dry_eye_latest_news/Experience%20Expands%20The%20Reach%20of%20Restasis/Review%20of%20Ophthalmology.htm
In previous comments, someone mentioned a particular antihistamine, and I too notice a close relation between allergies (allergic rhinitis/hay fever) and my iritis flares. Interestingly, the antihistamine mentioned in the comment also has anxyolitic properties, which can really help with the pain and muscle tension around the face caused by a flare. (I was once given a very small dose of Xanax to help me sleep during my iritis attack and I found it helped immensely with pain and redness.)
The allergy connection seems to be more than a coincidence for me. Usually I have a flare after returning to Canada, where I suffer from allergies, and my most recent flare in Asia was after moving to a place where I was seriously allergic to the trees. When I lived in HK, where I have no allergies, I did not have iritis attacks and I have always noticed that when I take 'allergy needles' (i.e. desensitization therapy), I have had long periods without iritis as well. Currently, I am periodically taking a new antihistamine, levocitirizine, when I have a bad flare up of allergies. I find that, in conjunction with the Restasis, my eyes are clearer and better than I ever remember them.
I am specifically mention allergic rhinitis, because I also have noticed that after some treatment for a latent sinus infection, I have had a lot less of what I perceived as 'orbital pain' (pain deep in the eye). This doesn't mean I was mistaken, but I just noticed after paying more attention to my sinuses (irrigation, nasal sprays, etc.) that a lot of my pain lessened. I am reminded of James Joyce who had horrible mouth infections and as a result suffered from iritis. I sometimes wondered if the allergies and sinus inflammation/infection accounted for some of my flare ups as well. Whatever the case dumping tons of steroids down my tear ducts (and into my sinuses and throat as a result) could also account for fungal build up which I notice is thought to be responsible for a lot of chronic sinusitis.
Anyhow, as of today I am about 10 months with no flare, which in another 5 months, will overtake my second longest period without iritis. At this point, I have no indication that my eyes are getting worse and actually, my glasses prescription has returned to pre-iritis levels (this could have been from the effects of cortisone because my prescription changes when I'm using them). Generally things are looking up and I'll keep you posted.
As always these are just my ramblings to make sense of things and should not be considered medical advice.
J. |
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Day two... I woke up... my eye hurt. Then I got dressed and went to hang out in front of the drug store.
It's okay if you aren't into Cheech and Chong (or my cool Eminem reference last message).
I'm in pain. Not the flare up iritis kind of pain, but the dull achy orbital pain that makes me think "my IOP wouldn't be spiking already would it?" Anyhow, I'm not a classic steroid responder so from what I know, that gives me a low possibility that I will become one. I guess we all respond after huge doses, but it usually takes me a week or so. Still I would love to know what this orbital aching is. I guess I should get it checked out. Sigh... another adventure.
I know I was supposed to put two and two together for everyone today, but I've just come off of a full day of teaching, my eye is achy and I'm not feeling too up about things right now. I have a job interview tomorrow (need to do a demo), I have a test at school as well as needing to meet a new client. I really wish I could just leave it all and spend the day with an ice pack on my head.
Crazy thoughts are going through my head about switching off Pred Forte onto Lotemax or something because this pain seems to come from the pred forte usage. It could be that my sinuses are caked full of the eye drops or it could be I'm sensitive to the press. Anyhow, I'm just tired of being sore. Man, my health sucks right now too. But there isn't much I can do about it when I'm trying to hold up school, work and other stuff. Sadly, unlike Canada, I can't just call in sick. That was one good thing about Canada.
I just realized that the ophthalmologist I went to yesterday didn't take my eye pressures. Well, maybe he did, but with one of those silly machines. Those things are nothing and not very reliable. Then again, if I went by tomorrow, I wonder if I could drop in for a quick reading. Would be worth it.
In other news my kitchen flooded again today. Way to kick a guy when he's down... making me choose between eye care and a plumber.
More stuff soon. |
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Wow, it’s been a long time...didn’t even know if I remembered the password.
I’m back…and so is the iritis.
My remission has come to an end. I finally had a flare. It was minor, but it was there.
I awoke this morning to soreness in the eye (upon movement with the lid closed), photophobia and circumcorneal redness. I also did the accommodation test (see a few posts back) and felt significant pain.
Well, it was panic all over again. You’d think after 12 times I would have it down to some sort of routine, but with so much time to forget between each flare ( i average about a year), it hits you differently each time. The main reason is, unlike the past times, this is only my second flare overseas. My first flare was in Hong Kong and at that time (rather unwisely) I self treated. Luckily, this time in Taiwan I had already scoped out a few places that I would go in the event of an ‘ocular emergency’ and brought lots of medication with me so I was prepared. Prepared but still anxious.
So now here we are, I'm in Taiwan and it’s a whole new ball game. The Taiwanese medical system, by my account, is pretty good. It’s a co-pay system and the service is good, on the ball and best of all prompt. In Canada it’s often, ‘yes we know you have an urgent need, that’s why we’ve slotted you in 3 days from now.’ Then there are the waits, over packed waiting rooms. Taiwan is much nicer and you don’t feel like the doctors are putting the budget ahead of the people. However, unlike Canada, I don’t have native language fluency and I am not under the care of an ocular immunologist. :(
Luckily, I found a clinic run by the former head of ophthalmology at a teaching hospital here in Taiwan and was quite pleased with the result. It was a bit expensive because it was an emergency clinic but the result was immediate and interesting. The doctor told me about a new drop called Restasis, a cyclosporine eyedrop that has shown some promise in treating iritis (more on that later). With the eye drops the visit cost me about US$35. In the end, I am using the same old pred forte steroid regimen, but I will add Restasis so there is (hopefully) an added safety net at the end of the prednisone taper. (This needs more research on my part.) Interestingly, Dr. Tsai mentioned that there was more ‘hepatic’ involvement for those in China (mine didn’t start until after Hong Kong… coincidence?) but that the ability to test for this was invasive, unreliable and often inconclusive.
Anyhow, at the moment I’ve really hit the inflammation hard, starting from an systematically decreasing dose of pred forte (every 5 min, 10 min, 20 min, 40 min to one hour) and plan to take the drops every two hours for the next few days. The Restasis I will take twice a day.
Coming soon: 'the deal with Restasis…chemo for the eye?' and speculation on why I had my recent flare. |
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I'm very sorry for not updating until now. I have recently relocated to Asia and am getting settled here so my access has been infrequent at best. Just a quick update on my eye, I have been off the predisone drops since December 12, 2005 and I'm currently in Asia with no signs of any inflammation or eye pain. I brought lots of meds with me but haven't had to use them. Being the pillar of health that I am, I have been sick twice since coming to Asia in mid-February: first, with food poisoning (that's a given usually) and now, for over a week with Bronchitis. After seeing a recent chest X-ray, maybe I should turn this into the 'lung blog' :P
Anyhow, for this first post (in a long long time), I'm going to warm up by responding to a recent question posted here on the blog. The question was how often do I have iritis. Basically, I have had iritis about 12 times on an average of one year to one and a half years. You can see my specific episodes by clicking on the 'My Episodes' link on the main page.
As for your other comments, there are many of us who are HLA-B27 positive and have iritis without other symptoms of AS. Personally, I have had one rheumatologist say that he can detect traces of AS and another say that she can detect no traces. From what I have been told, an MRI of the SI joint would give an 'academic' evaluation of whether or not I have minor signs, but wouldn't really change the diagnosis (which is I am at risk but not showing specific signs). Basically, a rheumatologist can do physical tests and an X-ray to see if you have it, but (in my opinion) you would already know from soreness and pain in the low back. If you don't have soreness and pain in the joints then basically there is nothing to treat.
That being said, HLA-B27 and iritis puts you at risk for a number of diseases such as Crohn's, Lupus, etc. Remember however, that all of these diseases have their own symptoms, most times over and above iritis. I think many of us have slight symptoms and have went through a process of elimination trying to figure out if we have a related disease. It's a long road with lots of fights for the tests you want.
There is some research to show that some acetic-acid based NSAIDs such as Indomethacin (Indocin) and Diclofenac (Voltaren) taken internally have some effect against iritis (complimenting prednisone drops), but this is only in treatment, not prevention. Personally, I use Advil 'superstitiously' if I think I feel an attack coming on. I have a routine when I start feeling the slightest hint of a flare up, which is basically voltaren drops, advil, and relaxation, moving to a steroid drop if things are progressing. Of course, there is no emprical evidence to support that this 'avoids' an attack and I do not recommend self treatment. You should always talk to a specialist in iritis or opthalmologist first. Also, there are, of course, side effects such as ulcers and internal bleeding with use of NSAIDs.
For severe iritis, others have had success with IMT (Immunomodulatory Therapy) using things like Methotrexate or Cellcept. I can't speak from experience because I haven't tried it, but I do know it is long term and there are side-effects. Everything must be weighed with risk versus benefit. www.uveitis.org has more info on this...
Hope that helps!
-J. |
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Well, less than a week before I'm heading to Asia. I have my backpack full of eye drops. Hopefully, I'll have room for some clothes. As I've mentioned before, as I'm moving longer term across the world, updates will be less frequent in the next while... but keep checking back.
Anyhow, many have asked about Dr. D's background and I noticed that she had some new frames up in her office. I only post this because there is some wondering about her background in Uveitis. Here's what I noticed:
She indeed has completed a Uveitis Fellowship at McGill University, Montreal, Quebec (in 1999). Aside from the necessary Canadian credentials, she is also a fellow of the American Academy of Ophthalmology and has her National Board of Medical Examiners Diplomate in the US as well.
I know there have been some posts wondering about Dr. D's background and if she has indeed completed a fellowship in Uveitis or simply has an interest. If you need any information on contacting her office, please drop me a comment.
-J. |
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Here's something interesting: I'm getting ready to leave the country for a while (which usually means a huge backpack full of eye drops) and I've just found out that there is a manufacturer shortage of Voltaren Ophtha Drops. I first became aware of this when I visited Dr. Derzko the other day and she took a call about substituting Acular for Voltaren. Since then, I have called two pharmacies here and they've told me the same thing. No one has it.
Acular, sadly, isn't at all effective against uveitis (treating or preventing)--at least that's what I'm hearing from some people in the know, like Dr. Rabinovitch and Iritis.org moderator Mike Bartolatz (referencing Dr. Foster). I don't know too much about this, but I have seen from studies regarding other associated diseases that Voltaren had a slightly better performance. While I can't find any studies to prove it, from my experience in the ophthalmological offices, Voltaren seems to be the NSAID drop of choice.
Anyhow, the bottom line is, they're out of Voltaren! Augh! The pharmacist should let me know soon when the company expects to have some more on the market. Hopefully it is available before I leave.
Feb. 1st, 2006 @ 12:21 pm
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| » Back from the Uveitis Specialist |
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Hi Folks,
Sorry there haven't been regular updates to the eyeblog lately. I am currently getting ready to move overseas so things have been hectic to say the least. That being said, I do my best to make sure that there is an update at least every two weeks so keep checking back!
I went to Dr. Derzko yesterday to get checked out. Ironically I had my best two weeks in six months until a couple of days before the appointments. I really thought the artificial tears and ibuprofen method was working, and I was cutting down the ibuprofen to a few times a week, even.
Sadly, two days before the appointment, I seemed to get much worse. Again, I'm not sure what triggered it, or even if there was a trigger, but I seemed to get worse overnight. In fact I remember going to bed and waking up in the middle of the night with a familiar achy feeling on my left side. This feeling is basically a stiffness that mainly hits my left hand, my left hip and the left side of my neck all at once. It's not pronounced, but just latent enough to realize there is a difference between the left and right side.
When I woke up the next morning, however, there was a marked change in my eyes. The whiteness I had been so proud of (see last post) had turned back to the familiar pink. It was like someone had flicked a switch. My eyes were achy and there was that familiar tenderness that seems to 'catch' on certain movements or changes in light.
Determined not to give in, I started the ibuprofen every four hours and artificial tears hourly. I also started into the Voltaren drops almost every four hours, too. The eyes responded slightly, but the pain was still there. I knew I was seeing Dr. Derzko that morning, so I didn't want to start any prednisone.
The pain continued from the back of the eyes. Nothing extreme, but the eyes were slightly sore. I didn't think I had any visible inflammation, but knew this was not a good sign to be having this kind of pain in the back of the eye.
Anyhow, to make a long story short, Dr. D didn't see anything on examination, which was a relief. The most interesting thing was that I had to have my eyes dilated and how much the cyclogel (a mydriatic/cycloplegic similar to homatropine, but not as strong) helped with the pain. It had a profound 'loosening' effect. Not only did the pain subside to a large degree in my eyes and surround areas, but my jaw and ears stopped hurting a lot too.
This was most noticeable after the cyclogel but also could have been in combination with the ibuprofen. I asked the doctor for some cyclogel to take with me when I go overseas.
Today, it feels like whatever it was has passed. Which makes me think. Was this an allergic reaction to a food I ate? The restless sleep and a slight nausea when I woke with the stiff feeling makes me wonder. Or was this simply because the ibuprofen was wearing off after long term usage. I'm not sure. Anyhow, markedly better today so I'm going back to the once a day advil regimen and going on the artificial tears again. I'll keep you posted.
Jan. 28th, 2006 @ 01:41 pm
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| » Milestone |
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A bit of a milestone to share with everyone: the eyeblog hit counter turned 500 today, which means this blog has had five hundred original hits since I started counting just over two months ago. Under the single keyword 'iritis' on Google, Eyeblog is number 43; not bad for a blog that has been up such a short time. Under iritis AND blog it is number 1, 2 and 3, as it is under a number of other associated keywords.
I have to say this feels satisfying in a way. Now don't get me wrong, it's not that I am posting all my personal medical information on here for notoriety. I started this blog out of need: first, the personal need to give some kind of perspective to what I was going through by putting it into text; and second, the need I perceived to have a personal account available for those with this disease. There needed to be something that was longer than a forum post and more friendly than the many (helpful, but) clinical websites out there.
Along the way, I have heard from some readers who have cared enough to share their experiences, offer advice and just plain acknowledge my rants. Brad, Katie and others, I thank you for adding to this journal.
Anyhow, don't worry, you haven't seen the last of this blog, but this is merely a look back at how far I've come. I have turned a personal milestone myself: Both eyes are in remission now, and I'm now drug free, except for NSAID drops (only when needed for pain) and the occasional Advil. My vision is returning to normal (i.e. I'm still using the same prescription of glasses) and I can still get 20/20 with vision correction. So for those who are sitting where I sat a few months ago wondering what is to become of life and eyesight, there is a chance you can end up like me (or better).
The key for me now, is to prevent a relapse and this is where medical science seems to fall short. Immunotherapy is reserved for cases that appear to be chronic and there are really no hard and fast rules for self-management. The optimal thing would be to make some kind of changes that would allow one to avoid further relapses. It might be a dream right now, but it will only become a reality through searching. I'll continue to post what I learn and my anecdotes as I try new things. Please always feel free to drop in and comment as well.
Looking forward to a great year of healing ahead. Yours, -J.
p.s. The current pic is a recent pic of my right eye, two months after the initial flare. It's looking much nicer now. :)
Jan. 10th, 2006 @ 09:44 pm
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| » Positive outcomes |
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On Tuesday I visited a new rheumatologist, a specialist in Ankylosing Spondylitis. There were some interesting findings and I'm not sure if I should be happy about them or not.
I didn't really reveal too much about my other rheumatologist's reports to the new doctor, not wanting to bias her diagnosis. I did, of course, reveal that I was HLA B27 positive, and that I had been to a rheumatologist before and had not been given much in the way of treatment. Most of the other conversation centered on my eyes, the amount of joint pain I have (annoying but not 'routine threatening') and some other symptoms such as intestinal soreness, etc.
What was shocking about the visit (in a good way) was this specialist told me that she could not give me the 'classic diagnosis' of AS, but inferring from the B27 marker, and my iritis agreed that I had many of the symptoms. The only way to really know is to do an MRI of the SI joint.
For some reason, this seemed like really positive news at the time. Perhaps it was because she coupled it with the fact that, based on my eye problems, if I was going to have severe AS it would have surfaced more prominently in the last 8 years and that it was rare for someone my age to get worse. It's also rare for someone approaching their mid-30s, with a history of these issues not to have more going on.
She also mentioned that I was not a candidate for any kind of systemic treatment, based on the fact that I "not showing any clinical signs" of arthritis. The pain that I have seems not to have done any damage yet. She did mention that this could change at any time, however, but it looked good that I had not had any trouble with this so far.
So basically I am left with few options. An MRI would only 'academically' confirm that I have some kind of bone/spinal involvement, i.e. systemic disease going on. It would not suggest a course of treatment. My primary care person is still my ophthalmologist, who feels that eye drops are worth the risk (cataracts/glaucoma) at the moment and immunological therapy (IMT) is not warranted unless I get worse.
At the moment, being in remission, I don't feel like pushing things, because I want to stay drug-free as long as I can...except for the Advil, which the new rheumatologist told me was good practice.
So in the end, I'm not sure whether to be totally frustrated that the pain I have both in my joints and in my eyes and my yearly(+) flare-ups is 'mild enough' to be considered not treatable or to be happy that I seemed to have dodged a bullet thus far... come to think of I, I think I'm both and still sore to boot.
Anyhow, I'm going to for my second allergy injection tomorrow. I hope this doesn't cause the eye pain that it did last time. I'll let you know.
Jan. 5th, 2006 @ 10:57 pm
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| » Surviving the Holidays |
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Hello all, just a quick note to say that I made it through the holidays without a flare--even was brave/dumb enough to attempt a few alcoholic beverages! Things still look stable and that's good news because I booked my flight to Asia a few days ago. Anyhow, welcome to the New Year... hopefully a pain and inflammation free one.
The worst patch I had during the holidays was when I took my allergy needle last friday. This was the first time I had an injection for a few years, but I figured, since there seems to be some correlation between allergies and iritis for me, I should try immunotherapy again. I'm wondering if I made the right decision.
After the allergy needle (and a chocolate binge, mind you), I put in a bad night of sleep (which seems to be a trigger) and woke up to more eye pain and redness. Lots of artificial tears and NSAIDs (drops and oral) seemed to calm things down and I am stable again. I'm not sure if it was just a fluke, but I couldn't help noticing my arm itching (which is usual at the site of injection)during all of this and wondering if there was a correlation.
Over on (trusted) boards like Iritis.org, many have admitted that there seems to be a connection, however anecdotal, between allergies and uveitis. (There definitely is a connection between allergies and eye inflammation but it's usually in the conjunctiva.) Anyhow, I will risk one more shot and see what happens. Last time I did allergy shots I didn't have any problems for over a year. Again, it's anecdotal, but it's worth the risk for not having to use cortisone sprays and other medications during the summer.
Going to a new rheumatologist today, supposedly a specialist in Ankylosing Spondylitis, so I'll let you know what I find out. Still on Advil once a day and doing random artificial tears.
Jan. 3rd, 2006 @ 11:00 am
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