I have had severe red (whites of the eyes) irritated, very light sensititve and sometimes painful eyes for two years... seen many eye specalists and no real answers, tried many different types of drops and no help at all... the only thing that has helped is Pred Forte drops and I have tried many times to wean off slowly without any success... the eyes get redder and redder, more painful and unbearable.. I am currently trying just to put them in once daily, each eye... the doctor checks pressures often, etc... My eye sight so far is good thank God. I know it can't be good using these steriod drops long term.
How do I wean off Pred Forte eye drops (mild 0.12%) after lengthy use?
Question posted by LJA on 8 April 2011
Last updated on 12 September 2023 by Starynite
5 Answers
Starynite
12 Sep 2023
I’m just finding this thread ten years later and dealing with serious migraines from these stupid drops! I went in for my annual eye exam with NO PROBLEMS and was diagnosed with Euvitus ( sp?) and the optometrist tells me to take these drops every hour while I’m awake for two days, they 4 x a day for a week, twice a day, once a day etc. and to follow up with a specialist ASAP. I followed all the directions and by day 4 my eyes are hurting so bad, I see the specialist who sends me for blood work and an MRI, drops words like MS and has me in a panic, it gets worse and worse to the point where I’m in unbearable pain and can’t open my eyes from the light, I’m going back and forth with my specialist and she keeps telling me to increase the drops.
I ask the technician if the drops could be causing the pain, she says most likely not and go to the ER if it gets worse, I end up spending 8 hours in the ER getting thousands of dollars in debt because we have “the best health insurance plan” my husband employer ( Walmart) offers and have a $5,500 deductible, only to find out the drops were giving me a migraine. They treat the migraine and I go home. I go down from 3 a day to 1 a day because I can’t bare the migraines anymore and now I get withdrawal symptoms, irritation, nausea, diarrhea and have to increase the dose again. Back to having a migraine. All of this in 2 weeks! Also, had serious health problems from late stage Lyme disease for 6 years, so that’s probably what triggered the initial MILD inflammation. This is a Catch 22 nightmare!
smoochie2
22 Feb 2014
I couldn't believe what I was reading as I have had an almost exactly the same problem with my eyes. I am retired now but worked as a Registered Nurse for 32 years and never saw a patient with a similar problem. I was never on Pred Forte, but was on 2 other opthalmic steroids, named Fluorometholone and Lotemax. The last opthalmologist I saw one month ago who is a Cornea specialist attributes my problem to my dog pet dander as my dog sleeps on my bed. It is not an option to get rid of my 8 year old Jack Russel Terrier. I am washing bed linen in hot water to try to kill the microorganism he saw there 3 weeks ago. He also put me on bacitracin opthalmic ointment which now I believe I am allergic to. I am saving this testimony to try to learn from it. I am also going to buy new bedding, which i have to do anyway.
jazz dude
16 Jan 2014
Hi. I have a similar problem, only I'm on the 1% which I've been on for 3 yrs, and had cataract surg as a result of the drops. The opthamologist says I need to be on them "long term" basically forever I guess. My situation I think is related to Lyme related problems which haven't been officially diagnosed, as it's hard to diagnose, and the conventional treatment for lyme is poor at best when you have had it for a long time. However, I'm being treated holistically, with some improvement. I just have to keep reading. I've been told that the GAPS diet can help. but I don't have the time or discipline to do it wholeheartedly, but have cut out most carbs and sugar and are doing more green juicing. All these seem to help some, but am still on the drops. The Opthamologist didn't even mentioned the .12% drops, as a way of going from the 1% to the .12%. I was taking the 1% every other day, then my eyes seemed to be worse, so now I'm back up to every day.
RichardHo
21 April 2013
My God LJA, you have the choice of going to a real Dr. or going blind! Do you think it is worth the money? GO TO AN OPHALMOLOGIST! A real MD who specializes in eyes. Who are you going to now?? The "Dr." who gives you eye exams? He tried to tell you to go to a real Dr., but go tothe Ophthalmologist, not the family Dr. You have what is called eyeitis or Uveitis (same thing). If you keep messing around with it you will go blind!!
DzooBaby
8 April 2011
Pred Forte should not be given long term! You are experiencing rebound effects from the steroid. When you stop taking after this long you will have rebound redness and sensitivity worse than ever. Once you have weaned to one drop once a day that is as far as you can wean. You will just have to stop and do the best you can until they are better. You have to stop and ride out the pain. Use regular lubricating drops to help-get the non preservative kind and then you can use as often as you want. Give yourself a time to quit when you can be home in a dim room and are able to keep the eyes closed as much as you can. Eyes heal pretty fast when you keep them closed. It may take a few days but it will get better. Good Luck!
LJA
8 April 2011
Thank you for your reply, I suggested to the eye specalist it was a rebound effect and he made no comment.. it is very scarey to me... I last tried getting off these very very slowly and lasted 25 days OFF them, but the pain was unbearable, the reddness terrible and I had to go back on them. I am so scared... and have no professional support... last time I saw the doctor he basically told me he has tried everything and is giving me the brush off by saying to see my family doctor... very helpless feeling. When I got to one drop once a day, I then went to every other day before stopping completely. It is hard to miss work, etc. deal with everyday living... I hide behind dark glasses all the time.
DzooBaby
8 April 2011
I know! I am not without sympathy and I blame the Dr for letting you go this far down the road without telling you what happens when you take these meds long term. They can be damaging to the cornea to use long term. When you tried to stop before were you using lubricant drops to help ease some of the discomfort? Get something like Refresh Tears, the non preservative kind because the preservatives used frequently can cause redness and irritation too! Keep your eyes closed as much as you can while you are withdrawing-it is a rebound effect. He probably didnt say anything because he didnt want to have to admit he should have told you the consequences of using them long term. Do you have blepharitis? Bleph can cause redness and irritation and a feeling of something in the eye and sometimes even sensitivity to light.
If you have Bleph it is easily taken care of with daily or twice daily eye scrubs along the lash line with tearless baby shampoo, a few drops in a cup of warm water and dip a q-tip in and scrub gently along the lash line top and bottom using one end of the q-tip for the top and one end for the bottom. You can use lubricant drops between scrubs for comfort. Bleph will improve greatly with good lid hygeine.
LJA
8 April 2011
I really appreciate your advice... it helps me some... I do not have blethitis... it all started when I was having headaches and my eyes were a bit red... the first eye doc put me on antibiotic drops for ten days and when I tried getting off them they got so much worse... that was the start of a vicious cycle for the past two years... went on tobradex for a long time and last year finally got on pred-mild... twice daily... (in the meantime the third eye specalist has tried numerous alternatives (anti allergy, etc..drops) to try and get me off the steriod drops and nothing worked, some made it worse..also did a eye cat scan and ruled out thyroid eye disease... have ot had a firm diagnosis... scleritis was mentioned ..ummm I know have constant stuffed up sinus and earaches too! Docs say no connection but I beg to differ. .he now wants to try restasis but I am finding out from postings that has a lot of side affects and not always helpful for people...
and very expensive (I do not have coverage)... I can buy BION lub drops (no perservative) over the counter, wonder if they are the best to try..they are not cheap but better than restasis price.. They are quite red and painful and light sensitive ... hope you will reply and others will too...
DzooBaby
9 April 2011
Any lube gtts, sorry-drops, will help and no they are not cheap! You poor thing, you have been on a vicious cycle. They should have explained that to you after that first time that you would get rebound effects. I used to see people after they had catarct surgery and they would get a bottle of the stuff that should last 6 weeks and they would flood their eyes with the stuff and run out in a week then get really bad rebound but it isnt nearly as bad if you havent been on it long. You have been using a long time in one form or another. Scleritis just means that the white of your eye-the sclera-is inflamed. I think the regular lubricant drops will work as well as Restasis-you'll just need to apply more often. I wondered about Bleph because the symptoms are similar. Have you seen an allergist? Are you seeing an ophthalmologist or are you seeing optometrists? You need to see a good ophthalmologist (MD not OD) Try ice cold compresses when they are red and feel hot and inflamed.
That may help some. Make it really cold but not cold enough to burn the tender eyelid skin. I'll try to do some research and see what else I can find out. I'm so very sorry-it must be just miserable!
DzooBaby
9 April 2011
I wouldnt doubt the sinus has something to do with it. The lacrimal glands drain into the sinus therefore the sinus can clog and back up into the lacrimal gland! Maybe seeing an allergist will help if you have not already.
LJA
10 April 2011
Hi, I really appreciate your comments and input... I am not good at searching things on the internet... ummm - anyway, I have a new family doctor and a sinus cat scan has been ordered and she is referring me to the allergy clinic..I get the scan tomorrow but the allergy clinic could be awhile to get the appt. In the meantime I am still using only once per day, the Pred Mild and lubricating drops Gen Teal (has a perservative) twice daily... I know there has to be a connection between my sinus/ear issues and the eye problem.. and I know I have to get off these drops... it scares me a lot... I am going to try once again to stop them but ever so slowly... I use cold compresses often as well.. I recently bought the BION tears (without perservative) and plan to use those a few times a day when I finally go off the drops... keep in touch, if you have any other ideas or info... find anyone else with same problem let me know..thanks
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Further information
- Pred Forte uses and safety info
- Pred Forte prescribing info & package insert (for Health Professionals)
- Side effects of Pred Forte (detailed)
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