What to expect when tapering?

[marilyn1229]

Hi,

I am currently in the first couple of days tapering from 20mg to 10mg prednisone. This is my first time with iritis and first time tapering prednisone and I was wondering what to expect? I already have some soreness in my affected eye and a little redness. My lid feels heavy, too. My doctor said it is due to my body adjusting to the lower amount of steroid.

How does one know if it is a flare or just the reaction as he said? Has anyone experienced this and can guide me on what to expect. Thank you so much.

[marilyn1229]

I think the drop from 20mg to 10mg was too much too soon. I was on 20mg for 14 days prior to decreasing to 10mg. On day 3 of 10mg my eye started getting red and achy and my lid felt heavy (yesterday)...no improvement today. I fear it is just going to get worse.

Perhaps 2.5mg decrements spaced 2 weeks apart I might tolerate better.

My doctor said I should expect this, as it is my body reacting to lower amount of steroid. I'm not feeling good about it though My fear is compounded by the fact that I am starting a new job on Monday and I don't want to look like I have a swollen eye

[Hudsongrl]

Yes Marilyn that is a big decrease. 2.5 mg every 2 weeks is a reasonable decrease. Maybe call doc and see if you can do 17.5 mg for at least a week. Then try 15 mg. for 2 weeks, then 12.5 mg and on down. It has taken me forever to get from 40 mg. to 7.5 mg. i am only going down by 1.25 mg. each week now. My fear is a flare and then what?

[vancouver]

I was on maxidex drops hourly for month. Similar strength to your drops. Tapered off
In 9 days. No problems. Nothing oral. Cell count 1+ at beginning which is low. Was 4+
Before going to doc, I think.

[Hudsongrl]

Vancouver tapering off oral steroids is WAY more difficult than tapering off steroid drops. You were lucky you responded so well.

[marilyn1229]

I finally saw a uveitis specialist today, from the list that studied under Dr. Foster. She is wonderful. Dr. Joan Lee.

I had 3+ cells and mild CME. She felt that Lotemax was not quite strong enough for my situation, and switched my drops to Durezol. She also gave me the paperwork to get all of the blood work done to look for systematic conditions that might have caused my iritis. She also did some type of scan that looked at my retina and saw some very mild inflammation which she said the Durezol will be able to penetrate further into the eye than Lotemax was able to. I am also back to Cyclogyl 3x daily.

Although this is a set-back from my last visit with the regular eye doctor (there were only trace cells present) I am so glad that I was able to see the specialist today!

[Hudsongrl]

So glad you saw the specialist. I see a uveitis specialist too. Huge difference. Sounds like you are on a good track.,the durezol is much better than lotemax.

The mild CME...do you see wavy lines on Amslerr grid? This is what i believe i have too. I told doc about it last time and i think she is taking pics of eyes when i see her tomorrow. I hope it eventually resolves. Did your doc say that it would?

I have questions ready to go for tomorrow's appt. will keep you posted.no wonder your vision was blurry with 3+ cells. I think you will improve now.

[marilyn1229]

Hi,

On the Amsler Grid, the lines are straight for me.

The Durezol is a lot stronger I can tell already, feeling a slight sting when I drop. My eye feels a little better after using it every hour today...feeling positive.

Hoping your appointment goes well tomorrow!

[Hudsongrl]

That's good lines are straight. I have a large grey floater leftover from the iritis and when it moves on the grid the lines get wavy in that spot. I had to draw what i saw. She didn't seem real concerned. But, i will ask more tomorrow.

Yes, durezol can sting and it can cause some blurriness too.

[Hudsongrl]

Update from uveitis specialist today. My eyes are still quiet...no inflammation. OCT was normal and so was visual field test. I read 20/20 today out of both eyes. I will never take my vision for granted again. I see doc again in 5 weeks.

[marilyn1229]

Hi Hudsongirl!

So glad to hear about your eyes! That is great news.

I have not been on in a couple of weeks, as I started a new job.

From my last visit with specialist I have been doing Durezol every hour, and still on the oral pred. For the most part the eye as been behaving but not improving to the point where I can say I am making any great progress in my decreased vision and blurriness in that eye. For example, last night I fell asleep early...about 8pm. I woke at 6am, and the eye is all red again. So it's like every morning I'm starting all over again. Very frustrating.

I feel like we are just keeping the inflammation at bay and never really stomping it out. I know they want to stay conservative on the oral steroids but I feel like they never prescribed enough to make any real improvement other than keeping it from getting any worse.

January 7th this all began and net/net to this date I think maybe I should at least have my vision back?

[Hudsongrl]

Hi Marilyn, are they still tapering you off the oral steroid? I am sorry eye is still blurry and red. When do you see doc again? They had me on lotemax ointment ( another steroid) for night time and that seemed to help becauuse of course you are not doing drops while sleeping. Wondering if that would help you?

[marilyn1229]

I am still tapering on the oral pred. I see my specialist this Monday the 15th. I do have Lotemax but not currently using it as my Dr said it was not strong enough. I have heard of a type of ointment that some people described on this site that they used for night use as it continually treated eye during sleep. I wonder if that would help me because in the morning I feel like I am starting all over again...

[Hudsongrl]

That is what they told me the lotemax ointment was for...to keep symptoms from returning during the nite. Seemed to work for me. It is different from the drops.

How much oral pred. Are you on now Marilyn? I am down to 6 mg. kinda worried about a flare as I go lower and lower. We have 2 trips planned in March and I don't want issues while we are away.

[marilyn1229]

Hi,

I am on 15mg now of the oral pred and decreasing 2.5 each week. I didn't know they had Lotemax ointment...I will ask her about that on Monday. It makes sense to use some type of ointment for the overnight hours. I was referring to the Lotemax gel drops that my doctor felt were not strong enough, so she switched me to Durezol. The Durezol seemed to be great for the first week or so, but yesterday and today I feel as if I'm fighting with this eye again...so frustrating.

I totally understand your concerns about going away...I could not even think about going away while this is active. I feel like it consumes my life, I worry so much about it. What is so worrisome to me is the vision loss/blurriness that does not seem to get better. Got me so down today.....