Thanks again Mike for all of your help.
I had the blood tests that Prof. Ayliffe wanted me to have done on the NHS. Some of the tests will have to be done in England, and I am afraid that there will be a very long wait. Hopefully not, but when I had a special Vit D test done last year it too was sent to England and I did not get the results for about 4 months.
Today I have just reduced the dosage of Aciclovir 400mg from 5 a day (one week) to 2 a day for the next 2 months. With the Maxidex, I was told to put in 4 times a day for 2 days and then 2 times a day for the next 2 months. I can still feel a bit of pressure in my eye which hopefully will abate with time.
As for cataracts, do I actually have to wait until it gets worse? Can I not have it done after my iritis calms down and I have just minor blurring?
I mentioned to you that my eye (sometimes both) is dry. I called Prof. Ayliffe's sect'y and she said he highly recommends Hylo-tear which is preservative free and can be used with contact lenses. I am going to try it and will let you know if it helps.
It is impossible to worry about anything right now because we have been having the most wonderful spring, which of course makes everyone smile.....
What should I say to ophthalmologist?
Moderators: Mike Bartolatz, kwork
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Mike Bartolatz
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Re: What should I say to ophthalmologist?
The very slow taper down on meds is a very good plan and shows how much experience professor Ayliffe has with treating uveits of any cause.
if it is the Herpes sx virus causing all of this mischief, you may be on the anti viral med and a drop of steroid for a very long time so be prepared for this.
usually vision is compromised to about 20/80 here in the USA before any specialist would consider doing cataract surgery on a person with a history of uveitis.
I waited until I was legally blind from cataract before surgery as I had Pan uveitis going on with likelihood of post surgery complications very high and I did flare up with major inflammation a 4+ for several months with multiple injections required to calm the inflammation which resulted in glaucoma.
if the pain increases, get in for a pressure check as this is sometime the only thing one feels with glaucoma.
wish you the very best,
mike
if it is the Herpes sx virus causing all of this mischief, you may be on the anti viral med and a drop of steroid for a very long time so be prepared for this.
usually vision is compromised to about 20/80 here in the USA before any specialist would consider doing cataract surgery on a person with a history of uveitis.
I waited until I was legally blind from cataract before surgery as I had Pan uveitis going on with likelihood of post surgery complications very high and I did flare up with major inflammation a 4+ for several months with multiple injections required to calm the inflammation which resulted in glaucoma.
if the pain increases, get in for a pressure check as this is sometime the only thing one feels with glaucoma.
wish you the very best,
mike
Mike Bartolatz
Moderator
Moderator
Re: What should I say to ophthalmologist?
Looks like it is going to be a waiting game until my eyesight gets bad enough for Ayliffe to take care of the cataracts then. Ugh....
I made a mistake - I am on 1 drop a day of Maxidex for 2 months - not 2. I thought of waiting until the end of the week when the nurse thought all of my blood test results would be in before calling the Prof. to tell him about this slight pressure. After reading you post, I will now call him even if the tests do not come back. I would imagine he is going to up the Maxidex again.
The first steroids I used was Pred Forte which did seem to get rid of the feeling of pressure although there was a misunderstanding and the doctor thought I had reduced drops to one a day and took me off them only for the flare-up to start all over again. I was actually on 4 drops a day which was a big drop from 4 to nothing. Unfortunately, I did not have the knowledge I have now about reduction - if I did, I would have said something.
Is there a reason, do you think, that I have only been on Maxidex since then?
I made a mistake - I am on 1 drop a day of Maxidex for 2 months - not 2. I thought of waiting until the end of the week when the nurse thought all of my blood test results would be in before calling the Prof. to tell him about this slight pressure. After reading you post, I will now call him even if the tests do not come back. I would imagine he is going to up the Maxidex again.
The first steroids I used was Pred Forte which did seem to get rid of the feeling of pressure although there was a misunderstanding and the doctor thought I had reduced drops to one a day and took me off them only for the flare-up to start all over again. I was actually on 4 drops a day which was a big drop from 4 to nothing. Unfortunately, I did not have the knowledge I have now about reduction - if I did, I would have said something.
Is there a reason, do you think, that I have only been on Maxidex since then?
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Mike Bartolatz
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- Joined: Fri Feb 06, 2004 9:58 pm
Re: What should I say to ophthalmologist?
We don't have maxidex here in the USA so I'm not up to speed on it's proper usage. you'd have to ask Professor Ayliffe this question so I suggest that you start a journal with questions and any symptoms you may develop as it might lead to diagnosis of underlying cause and help prevent a complication from drugs or progression of disease. that is scary that the doctor was so negligent in telling you to go off the steroids that fast.
It's a good thing you weren't on ORAL drugs as that could have killed you to go off a high dose to nothing over night.
I don't like steroids but I know they are necessary and that they have to be slowly tapered to allow the natural steroids to once again be produced by the body. We don't talk about this much so to bring it up from time to time is a good thing to do so thanks for telling us about your situation.
Cataracts can grow quickly so you might be getting surgery sooner rather than later while on steroid eyedrops. the problem is getting around once vision has gone beyond 20/40 as one cannot drive here in the USA anymore. I believe this to be the same in other countries too???????
our public transportation system was dismantled by the automobile and Big Oil and Tire companies back in the '50's and 60"s so we have little option to driving or owning a car.
Take Care,
Mike
It's a good thing you weren't on ORAL drugs as that could have killed you to go off a high dose to nothing over night.
I don't like steroids but I know they are necessary and that they have to be slowly tapered to allow the natural steroids to once again be produced by the body. We don't talk about this much so to bring it up from time to time is a good thing to do so thanks for telling us about your situation.
Cataracts can grow quickly so you might be getting surgery sooner rather than later while on steroid eyedrops. the problem is getting around once vision has gone beyond 20/40 as one cannot drive here in the USA anymore. I believe this to be the same in other countries too???????
our public transportation system was dismantled by the automobile and Big Oil and Tire companies back in the '50's and 60"s so we have little option to driving or owning a car.
Take Care,
Mike
Mike Bartolatz
Moderator
Moderator
Re: What should I say to ophthalmologist?
To our ever helpful Mike,
I am not sure how I would get through this without your help, so thank you again and again.
My journal is now underway. Thankfully I can look back on this thread for things that I might forget.
Best regards.
I am not sure how I would get through this without your help, so thank you again and again.
My journal is now underway. Thankfully I can look back on this thread for things that I might forget.
Best regards.
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Mike Bartolatz
- Posts: 6595
- Joined: Fri Feb 06, 2004 9:58 pm