Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Iritis

Hi Mig,
At age 71 I would think I should be really tuned into my body. Last time I saw my doctor was to get a prescription for Prednisolne. I woke up with my eye feeling grainy and that is a sign that iritis may not be far behind. I do know the difference between makeup or an eyelash in the eye. I have been wearing contacts for 18 years and I continue to wear them even when I put the drops in. Each of us is different I would never go two days without poping in some drops. To me I would be asking for a full flare of Iritis.

I have to tell your this. When I was at the doctor I was sitting on the table and she was on the stool looking through my chart. And kind of under her breath I heard her say huh not much meds. The only prescribed meds I take is for hypertention. I had a bone scan. I got a call from the doctor telling me I have Osteoprosis. And she wanted me to start taking Fosamax. I told her my undetrstanding is that it was not cheap. And she agreed. I opted for lots of soy, yougart plus extra calcium supplement. I have decided my body was not meant to absorb all of these prescribed meds.
I have passed my eating and exercise habits unto my daughter. She is going to be 49 years old this year and the only prescribe meds she take is birthcontrol and over the counter allergy meds for pollen.

I don't know that I have a mild form of AS because during the early days before my spine fused I had the pain and suffering. But I didn't have health insurance. So I did what poor people do live with it and take lots of asprin. I did have a membership at Bally's Health Club and I exercised. Best move I made in my life. I eat whatever I want. Never went on a diet. It is true I am careful in my portions, and rarely any fast foods.

Sorry to just go on. But I wish all of you the very best.

Doreen

Thanks mig! I will be printing that and taking it with me to the doctor. It's nice to have backup so he will actually listen to me

Amanda

Hi Chris-
My iritis is what diagnosed my AS...the eye doc called it, check for HLA-B27...I did the prednisone drops...now, iritis is to AS because AS is systemic...it's about inflamation, and somehow that inflamation from your hips/spine joints travels up into your eyes...pretty wacky...but there it is...so your nerves in your eye get inflamed...now, I would think that anything that controlled AS inflamation would also control iritis...LSD, NSD, biologics, supplements, all can control the inflammatory response, so therefore should control an iritis outbreak...I could be wrong, but it seems like common sense...my iritis was in '96-'97ish and that was it...I was on alternatives and diet and drugs and now biologics to control inflamation...check out all the info here on KA...

Hope that helps somewhat, never heard of the cold water thing, sounds like a temporary fix, cold reducing inflamation locally like putting ice on your knee...but the underlying situation needs to be delt with...

Peace
Linc

Thanks for all your advice. The iritis is certainly much better now and today I went to one of the very best consultants in London (Carlos Pavesio). I really felt that I wanted to go and see a specialist in iritis. My initial consultant had me take the Maxidex drops now for about a week (but not that intensively: day 1: every hour, day 2 : every 2 hours, day 3 : every 3 hours and then down to 5-6 drops per day). This seems to have brought down the flare considerably and I no longer have light sensitivity nor pain. After today's consultation with Mr Pavesio, he wants me to continue on 6 drops per day for 2 weeks and then 4 drops a day until I see him in 3 weeks from now. In addition, I have night cream (steroid: Tropicamide) and pupil dilators at night.)

His belief is that iritis should be treated aggresively, and he said, if he had diagnosed this originally, he would have had me on an hourly drop for a week!

I still have a few concerns. Perhaps some of you will be able to alleviate my fears!:

1. The information on Maxidex says that if the product is used for 10 days or longer, intraocular pressure should be routinely monitored. It has already been 8 days that I have been on the drops, and there are still 21 days left before I see the consultant again - and much of that time I will be abroad in Spain and so monitoring will not be going on while I am there. This makes 29 days altogether on the drops. So far, I know that the eye pressure is fine as I was checked regularly up till today, but should I have the eye pressure monitored while I am in Spain? Is this something that can be done quite easily - even by a simple optician?

I am really rather nervous about all this, and going away, as I feel it may be difficult to arrange this specialist monitoring while I am there.

2. The leaflet in the box of Maxidex says that prolonged use may result in glaucoma with damage to the optic nerve, defects in visual acuity and fields of vision and posterior subcapsular cataract formation. What does prolonged actually mean in real terms?

3. I told the doctor that I had slight cloudiness in the visionof the bad eye. The initial consultant had said it was due to cells which moved over the eye while I was sleeping on my side, but all I know is that it came on after taking the drops. Am I correct in thinking that this is a temporary side-effect of the drops or is it something to do with the iritis itself? Today's consultant said it was nothing to worry about, but I forgot to ask him what it was!

4. I have found out that the floaters are debris in the vitreus humor. What does this mean exactly and will they disappear? They seem to be rather minor in my case and I can only see them when I look at a white surface or the sky etc. I remember distictly that they appeared when I had iritis 5 years ago - and they certainly disappeared since then. They are extremely minor anyway.

I suppose I shouldn't worry - the man is supposed to be one of the world experts in uveitis and he has written countless papers on it and regularly travels the world taking part in conferences on the subject!

But I am naturally a worrier - especially about using drugs! It was my concern over using NSAIDs that got me onto the Low Starch Diet, and its amazing success with me has shown me that it can sometimes be possible to heal oneself. But of course, iritis is something that has to be dealt with quickly, and thank goodness for the drops - but they still worry me!!

Looking forward to your suggestions....

Hi

Re 1 and 2: Intra-ocular pressure should always be measured when you are on steroid eye drops, I think. In prolonged use of these drops there is a risk of developing increased intra-ocular pressure (=glaucoma?).

3. For me, the cloudiness can be caused by the iritis, don't have it every time though.

4. Don't know.

Summary: I think you perhaps should go and have your pressure checked. At least it should put some of your worries to rest.

regards

Mattias

Hi Amanda and Mig

Thanks for bringing up "episcleritis". I've just read about this condition and I think this is what I have so frequently.

I've always have dry eyes since I was a teenager. The first thing I do before I get out of bed in the morning is to put eye drops in my eyes, otherwise I cannot open them. This is how dry they are. Opthamologist agrees I do have very dry eyes but other than putting eye drops frequently, there's nothing I can do.

Once a month or 2 months, I have very prominent conjunctival vessels on my sclera. The eyes are extremely dry and painful which leads to headaches and migraines. I have to put eye drops in every 3 minutes (no kidding) in order to keep my eyes open. I also try tear gel, tear ointment, cream, etc. They soothe more than eye drops but make my vision blurred so I can't see properly for 10 mins. This pain and dryness will be gone in 1 to 2 weeks by itself. They have bothered me so much and affect my normal daily life. At least now I know what it is called and other people have it too. I worry that one day it might turn into iritis. I wonder how many people have episcleritis before they have iritis ? Does anyone have good tips on preventing and treating episcleritis ?

Olivia

Hi again Chris,

It's good to hear the iritis has improved and you're feeling much better now. In the context of the info you've provided I can try to answer some of your questions from my patient-level-only bit of knowledge.

1. If you've had no pressure problems up to this point and they've been monitoring your pressure routinely, plus you're moving to lowering the daily dose of steroids... my guess would be that your peak potential for developing pressure problems is behind you now. Both inflammation and steroids are factors which can lead to higher pressure, but having both of these factors in decline should move you to safer ground, I would think.

Still, it cannot hurt to continue having yourself checked if it helps to ease your mind, plus I've always found travelling puts an extra physical strain on my system that my eyes are never too happy about. If the specialist was not concerned (and was made aware of your travel plans), and you are diligent with your treatment routine, then you will probably be fine!

2. I have no idea how they might define 'prolonged'. That's rather vague and open to interpretation. Again, I'd take your cue from the specialist.

3. I don't remember cloudiness ever being a real issue for me, so can't really offer anything on this one either.

4. I think debris and scarring are different, in that debris may be able to work it's way out over time, whereas scarring can be a permanent hinderance to vision. I don't really know since I've been lucky enough to avoid these things somehow.

I would really try your best not to worry about this too much, since it sounds like you've been in exceptionally good hands in having access to such an expert in the field! Topical steroids are really quite mild if you are comparing them to the oral steroids. They are very effective since they reach the target so directly, but don't have the same systemic impact as oral steroids, and are therefore way less of a worry (to me). The only concern with steroid eye drops is when they are employed over the long term (for chronic cases of iritis) they can then lead to chronic catarats down the road. I've taken low dose steroids drops daily for about 6 yrs in a row, so I may have to face this consequence. After treatment for 2 attacks I think you'd be safe to view this as a distant and remote possibility.

Hope you will enjoy your travels!

I think I might qualify to speak about Iritis since I have had it chronically since 1970. I have had a cataract removed from so many steroid drops. I take 150 mg. Imuran daily and 4 mg. Medrol and everything I am in the dr's office they see "some" cells. When I have a very severe attack I have treated them as often as every 10 minutes.

I am so excited about the approval by the FDA of the new treatment for chronic uveitis which will be a pellet placed in the back of the eye and release the drug over a 30 month period. This should allow getting off oral immunosuppressants and steroids.

I keep drops and take them with me on every trip. I can tell as soon as it starts flaring and start the drops at every hour until I see the dr. He says I haven't missed a time in 35 years of knowing I have Iritis/Uveitis.

I see the Optho every 3 months.

Best wishes. We only get one set of eyes!

Possi

Hi and welcome to KickAS. I love this place. Hope you learn as much as I have in the last year here.

I've had iritis 4x in the last 10 years. I can offer you my experience as a patient.

I've never had high intra-ocular pressure, so I wouldn't worry about following my ophthamologist's advice while on a trip. I think you would know if you were going to react with high pressure by now and cataracts are a long-term concern.

I have cloudy vision with iritis and my understanding is that it is due to the cells which are due to inflammation. The "floaters" are noticed when you have a dilating drop, but are present normally but your iris is more closed (without the dilating drops) so you don't see them. This is my understanding from one of my eye docs.

Hope you are over the iritis soon. Check out www.uveitis.org . They have some great information and helpful people there.

Take care,

I was trying to remember the last time I had a full Iritis flare. And it was 1999.And that was the last time I saw an opthomoligist. But I have had many attempted flares. And as I said I imediately start the drops. I see an Optometrist about every two years for contacts. At my age I have mild cataracts he said you have to look real hard to see them. My vision is very good for a senior citizen
Each of us do what we feel comfortable with. But if your doctor give you drops
and you are under his care. And you then continue to worry then you are feeding the Iritis and causing inflamation in other parts of the body. IFFOT claims to be a worrier. Stress will be the result and it will take a much longer time for the iritis to get better.


Best wishes to everyone.

Doreen