Yes, the lotemax ointment. Do you think maybe 15 mg is not enough oral pred to clear the eye? I was started on 40 mg. then 20 mg. then 17.5, 15, 12.5, 10, 7.5 and now 6. But, it has taken me 3 months to get here...very slow taper.
How do you feel on the oral prednisone? Any side effects?
I am really sorry you are down. I get the same way. It is just such a frustrating condition. We had a trip to Italy planned for May and cancelled it. Working on getting $$ back. Makes me sad, but afraid to go out of country.
What to expect when tapering?
Moderators: Mike Bartolatz, kwork
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marilyn1229
- Posts: 29
- Joined: Wed Jan 13, 2016 6:18 pm
Re: What to expect when tapering?
Hi there again 
Had a visit today with specialist, and some good news is the inflammation is way down, she said no cells. But, the Durezol has caused my IOP to soar into the 40's. Hence, I am now on a new tablet 2x a day and 2 new drops 2x day to bring the pressure down. I have to follow-up next week for a pressure check. I am fairly confident it will decrease because during the visit she gave me one of the tablets and had me wait a 1/2 hour and checked again and it had deceased into the 30s. She also decreased my Durezol from every hour to every 2 hours, which I am really glad about. Also, I can stop the Cyclogyl.
So, now I'm on 2 types or oral medicines and 3 types of drops
And so my journey to quiet right eye, continues...
She did say that the blurriness will take some time to clear up. It is a slow process. I thank GOD that I only have this in one eye.
The oral pred does not bother me at all, no side-effects that I can think of...she wanted me to stay on same dosage and re-evaluate next visit.
I understand completely your fear of leaving the US with not much time under your belt in remission. I for one, will never take my sight for granted again, ever. I have become paranoid about my daughter too..when I see her rub or touch her eye it makes me so nervous. I know I have to calm down but I'm so afraid of her getting pink eye or something.
This condition is such a vicious cycle for me...because I believe that prolonged stress caused it, and now that I have it - - it has stressed me even more. I have to calm down and just take it day-by-day or I will drive myself crazy...lol.
I hope that it is easy for you to get a refund on your trip..I'm sure with medical proof it might not be too difficult.
Take care for now
Had a visit today with specialist, and some good news is the inflammation is way down, she said no cells. But, the Durezol has caused my IOP to soar into the 40's. Hence, I am now on a new tablet 2x a day and 2 new drops 2x day to bring the pressure down. I have to follow-up next week for a pressure check. I am fairly confident it will decrease because during the visit she gave me one of the tablets and had me wait a 1/2 hour and checked again and it had deceased into the 30s. She also decreased my Durezol from every hour to every 2 hours, which I am really glad about. Also, I can stop the Cyclogyl.
So, now I'm on 2 types or oral medicines and 3 types of drops
And so my journey to quiet right eye, continues...
She did say that the blurriness will take some time to clear up. It is a slow process. I thank GOD that I only have this in one eye.
The oral pred does not bother me at all, no side-effects that I can think of...she wanted me to stay on same dosage and re-evaluate next visit.
I understand completely your fear of leaving the US with not much time under your belt in remission. I for one, will never take my sight for granted again, ever. I have become paranoid about my daughter too..when I see her rub or touch her eye it makes me so nervous. I know I have to calm down but I'm so afraid of her getting pink eye or something.
This condition is such a vicious cycle for me...because I believe that prolonged stress caused it, and now that I have it - - it has stressed me even more. I have to calm down and just take it day-by-day or I will drive myself crazy...lol.
I hope that it is easy for you to get a refund on your trip..I'm sure with medical proof it might not be too difficult.
Take care for now
Re: What to expect when tapering?
Hi Marilyn, great news on inflammation. Hope the pressure goes down quickly for you.
I feel exactly as you do. Never take vision for granted. I envy you only have one eye involved. My total anxiety comes from BOTH eyes, but thankful I am quiet right now.
I feel like i am becoming OCD ish about checking my vision. I am always trying to determine if my vision is clear and how are the foaters and is there redness etc. honestly, it is exhausting. My eyes may be good, but I'm ginna need a shrink soon.
I hate this disease and yes, that causes more stress. Viscious cycle.
I am so glad you posted. Most days i feel like no one is on this group, but you and me. Lol very little response from people. Odd for a huge support group i think.
I feel exactly as you do. Never take vision for granted. I envy you only have one eye involved. My total anxiety comes from BOTH eyes, but thankful I am quiet right now.
I feel like i am becoming OCD ish about checking my vision. I am always trying to determine if my vision is clear and how are the foaters and is there redness etc. honestly, it is exhausting. My eyes may be good, but I'm ginna need a shrink soon.
I hate this disease and yes, that causes more stress. Viscious cycle.
I am so glad you posted. Most days i feel like no one is on this group, but you and me. Lol very little response from people. Odd for a huge support group i think.
Re: What to expect when tapering?
P.s. Still waiting to hear on trip refund. Another thing causing stress. Lol. On and on we go.
Re: What to expect when tapering?
Marilyn, just send you an email. Hope you don't mind.
Linda
Linda
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marilyn1229
- Posts: 29
- Joined: Wed Jan 13, 2016 6:18 pm
Re: What to expect when tapering?
Hi Linda,
No problem at all...I responded to your email
maybe what happens on this site is people get into remission or cured for the most part, and they want to forget everything related to this dreadful condition, so they never come back
Another theory... they read the horror stories and it scares them away for good! ha
No problem at all...I responded to your email
maybe what happens on this site is people get into remission or cured for the most part, and they want to forget everything related to this dreadful condition, so they never come back
Another theory... they read the horror stories and it scares them away for good! ha
Re: What to expect when tapering?
You could be right. No one posts good stories. It becomes anxiety provoking sometimes.
Marilyn, i just emailed you from my correct email addy. I didn't get your response because it went to icloud. Can you resend?
Marilyn, i just emailed you from my correct email addy. I didn't get your response because it went to icloud. Can you resend?
Re: What to expect when tapering?
I am just starting to taper off fluorometholone 0.1%, which I have been using for 6 months daily. I am now using it every other day for 6 months. So far I have not had a flair up but my eye is is dry, more painful as the day goes on and my vision is fuzzy in the am. I should mention my iritis is caused by a shingles infection and it has taken over a year to quiet it down I also take acyclovir which my doctor tells me I will problem take the rest of my life. My question is are these eye symptoms normal when weaning off the low dose predispose . My ophthalmologist doesn't seem too concerned and tells me my eye looks ok.
Re: What to expect when tapering?
fluorometholone is soft.steroid and you dont say how much per day. I was on hard steroid hourly for month and tapered off with no symptoms
My vision took months to come back. I was also on cyclopentolate.
My vision took months to come back. I was also on cyclopentolate.