If I stop taking lotemax

[HardToSee]

If I stop taking lotemax drops is there a chance that my hazy bision will go away? If I stop how long before it is out of my dystem do that I might check?
Thank you fir you time, it is greatly appreciated.

Condition uveitis tested for all infectitious diseases came back negative. Tuberculosis test also negative, chest xray fine. No know etimology. My lovely Dr.'s are trying to help. Tried oral predisone very bad sude effects after 1st and 2nd pill affecting neuro., sppech, heart, dry mouth, tremoring. Scheduled for brain mri to check for multiple sclerosis but wondering why bothet if I can't take medicine anyway.

Thank you for reading, please help.

[John C Hagan III, MD, FACS, FAAO]

Uveitis is causing the problem not lotemax. stopping can cause permanent damage to your eyes. Discuss with your ophthalmologist.

JCH MD

[HardToSee]

Dear Dr. Hagan,

Thanks for writing back. It just seems to me when I wake up after not using the lotemax for hours things aren't so hazy. Thank you for all your efforts you put on this board and for the time you spent addressing my concerns. Loss of vision is very scary mine started August 2nd. No more driving and my 20 mile bicycle rides have stopped. Very tough transition. Thank you fir being here.

[John C Hagan III, MD, FACS, FAAO]

It's not being off lotomax that does that. Part of your vision is blurry because of inflammatory cells (white blood cells mostly) in the anterior chamber of your eye. At night when you sleep due to gravity these cells settle inferior out of your line of sight. When you get up things are clearer. After you are up moving your eyes around, bending over, etc the cells get "shook up" and you are looking through the inflammation (uveitis) again. It often makes things look smokey.

JCH MD

[HardToSee]

Dear Dr. Hagan,

Good morning. Thank you for your reply. Just woke up, you are right for now things are clearer but my upper eyelids I am noticing are very swollen. I definately have an inflammation issue as even when I would ride my bicycle 20 miles for a day after my body would increase a size. I would only drink gatorade during exercise and just water after.

Thank you for writing back, it is greatly appreciated.

[John C Hagan III, MD, FACS, FAAO]

You should report this to your ophthalmologist.  Lotemax rarely makes the eyelids swell but many uveitis patients are also on dilation drops (red top) that can do that or on antibiotic drops like garamycin or tobramycin that can cause the problem.  Also lid swelling is not a part of "uveitis" in the most common forms.

JCH MD

[HardToSee]

Dear Dr. Hagan,

Thanks fior writing. Yes I have the red top drops for the left eye. It is Atropine SUL 1%. I will take your advice and call my Dr. who is a retina specialist on Tuesday. The haze is getting hazier.

A little bit about me, I am one of those complex medical persons. Also going for a long awaited appointment at a teaching hospital in September for intermittment ataxia and neuro muscular issues. Last brain mri in 2011 was tested for mls and als both negative but 3 neurologists said the panels were all wrong and to get in the car and get to Mayo Javksonville right away but Mayo didn't accept my insurance. My family Dr. per recommendation of another specialist or two was able to help at least for the initial appointment.

Othet issues are gastro intestinal, adrenal tumor etc. now the eyes. I also go through times of stuttering and other days could bicycle ride like the wind. I hope that I will be able to see again one day without the haze, floaters and snowballs. It's scary especially trying to adjust and ofcourse lufestyle adjustments.

Thank you for your advice, it is encouraging and ofcourse comforting during this time. Thank you for all your kind efforts and words from the wise.

Taking some ocular supplements and making healthier eating choices again so to hopefully boost the immune system. Will do some indoor pilates this week and give it my best.

Do patients are see again completely after something like this? I would surely miss seeing.

Thank you so much

[John C Hagan III, MD, FACS, FAAO]

As a generalization the causes of uveitis are often obscure and difficult, sometimes impossible, to pin down. We call unknown causes "idiopathic". Also sometimes diseases reveal themselves over long periods of time. I've seen patients with uveitis that had negative work-ups, including at places like Mayo's, that 4-10 years later developed sarcoidosis, tuberculosis, inflammatory bowel or joint disease, lupus or other auto-immune disease, etc.  Some never developed any other problems.

It is likely but not certain that your other mysterious ailments are caused by some as yet diagnosis.

Hang in there. No one said life was easy.

JCH MD

[HardToSee]

Dear Dr. Hagan,

Thank you so much for your kind and insightful response. My retina specialist had said the same thing to my family Dr. that whatever it is so far as many tests are negative, that the underlying cause had not reared its' ugly head yet.

It is interesting that you wrote that it can take years to surface. I find a connection between Crohn's and uveitis. I was diagnosed with that in 2000. Had a colonoscopy and endoscopy 2 years ago but it was not showing. Perhaps I will call my gastroenterologist this week.

Also read about predisone eye drops on that there is a risk for glacouma and yes that did run on my paternal side. Also, some of the side effects of the eye drops I am experiencing.

Being that I believe in God Jehovah I wonder sometimes if I spend too much time looking fir the cause when ultimately He is my healer. I believe He can work through you and my Dr .'s  also believe even if I am not healed that He can still use me for His will. Not everyone in a congregation or church is without issues like diabetes for instance but God Jehovah still can use them.

My pressure in the eyes per last visit had gone up using the predisone drops so will talk about this with the Dr. along with the upper eyelid swelling from the atropine sul 1% op.

What has helped today with the haziness a little was putting some ice in a hand towel and applying light pressure to my eyes.

It seems between both of my deceased biological patents that I picked up the worst of the genes from both. I also have thrombocytopenia and per virtue if dna testing hemochromotosis. My Dr. office also did a singulex blood work up with 5 vials of blood taken two days before this all started. My respective family physician found another bad gene in the report and high cholesterol that I take plant sterols for because I can not take statins.

You are correct in saying life isn't easy... for me I enjoy the comfort of peace and better health but perhaps that is true of everyone.

My last bible study was on many things but we also talked about keeping the eye simple. I can do that but would so appreciate a full restoration of my vision.

Thank you for your faithful volunteer work that has been a true comfort to me. I really appreciate it and am very thankful.

Do you think there is a possibility that I can get better with or without predisone drops?

Thank you very much

[John C Hagan III, MD, FACS, FAAO]

No I do not think your uveitis will get better without steroid eye drops.

Most people that take prednisone drops do not get steroid glaucoma. Untreated uveitis can cause a terrible type of glaucoma called uveitic glaucoma.

When you see your retina MD ask him/her about switching to durezol steroid eye drops if you're not better.  Also you will may need a glaucoma drop to keep the pressure (could be steroid or uveitis) down. It should not be a prostaglandin analog like latanaprost, lumigan or travatan Z

JCH MD

[HardToSee]

Dear Dr. Hagan,

Thank you so much. I will call my retina Dr. after the holiday weekend and see about making these changes. He was proud of me for trying the oral predisone even though that is no longer a possibilty because of the reaction.

Alot of people have success with it but my system is very delicate. I always remember those who have helped me so if life turns around I hope I can share some blessings back.

I can not tell you how much comfort and encouragement you have given me but truly your knowledge, insightful wisdom and presence here has truly been a blessing to me. It takes a very warm indivudual to volunteer and care for those in need and how appreciated you are.

I am going to keep you posted on my condition and adjustments if medications. My next appt. is Sept. 18th but will talk to the technician this week and see if we can make some of those changes.

If my cases were more of a rarity I would ask if you wanted to be added to my Dr.'s share list on what is going on but you already have the insight as to such conditions similar to mine.

Thank you for your expert advice and for being here for me. I feel very thankful and humbled.

Thank you so much

[John C Hagan III, MD, FACS, FAAO]

The MedHelp.org ground rules, necessary because of all the junk lawsuits filed in the USA, preclude any specific effort to assume care or direct therapy.  I have contributed as much as I can within those guidelines.
JCH MD

[HardToSee]

Dear Dr. Hagan,

Thank you yes I am in understanding and respect that. Looking ip some things myself such as facts that pilocarpine can be used to keep the pressure down and is not a prostaglandin.

I was diagnosed 2 years ago by my opthomologist as having borderline open angle glacouma.

Thank you for being here and will keep you posted on what my Dr. decides for me. Can I click my heels?

Many, many thanks

[John C Hagan III, MD, FACS, FAAO]

pilocarpine aggravates uveitis.

[HardToSee]

Dear Dr. Hagan,

Thank you so much. Yes, I just read that. Have a chart with beta blockers, carbonic anhydrase inhibitors, cholinergics, other and the ones I want to avoid prostaglandins. Will go through the list one by one tomorrow.

Question I am wondering and will bring up to my retina specialist is that I am wondering if I am a steroid responder? The steroid drops perhaps the cause of my weekly increased intra ocular pressure and also haze that was non apparent before the drops. I have also noticed my breathing feels cut iff in my neck and no I am not a hypocondriac I have had my Dr. and about 8 specialists in the past 4 years. I know that I do have an artery I think cartoid artery on one side that is nit getting enough blood or oxygen to the brain but for some reason since the drops I am once again feeling breathing difficulty.

Tonight on the patio with community lights arounds I had similar to vertical light flashes in my periferial vision and upper stomach pains. Alot going on at once. With me usually things happen with several emergencies at a time. Right now it's my eyes the smokey haziness, upper eyelud swelling, breathing and gastro intestinal along with my immune system attacking itself.

There are times of wellness and then times such as these. Thank you for being there for me and for sharing encouragement and shedding some light on this very complicated subject of vision changes and vision loss that is affecting me and I'm sure thousands of others annually.

I am thankful you are here and I appreciate you helping me very much. Going to do some pharma research tomorrow and try to write a summary of what I am experiencing symptoms, no improvement etc. and try to come up with a few succint questions and wants...to try.

Do you think in your own opinion that if I wanted to see myself if I were a steroid redponder by discontinuing steroid drops that I might be able to tell in a few days or a week by abstaining from them and seeing what symtomatic changes may or may not occur? I feel like I want to try this process of elimination. I know the drops are not systemic, I think that is the word I am looking for... but I feel like they are just not helping.

Thank you for being here. Good night, God Jehovah bless you with a sweet sleep.

[John C Hagan III, MD, FACS, FAAO]

Hardtosee, I am not going to respond after this post. These two American Academy of Ophthalmology forums are the only of the 300+ where every poster gets and answer and often a reply or two. None of the doctors can afford the time for extended "conversations"

I believe you are heading for trouble by taking actions with your medications especially your steroid eye drops without your physician team directing you to do so.

I'm signing off this conversation. Best of luck to you.
JCH MD

[HardToSee]

Dear Dr. Hagan,

Thank you very much forthe help you have been.

[HIGHIOPNYD]

Hi there,
I pretty much have the same kind of symptoms that you have described and I am on the verge of stopping my steroid drops. I would like to know if you stopped them and what happened subsequently.
Thanks

[Hudsongrl]

Following this...dr. hagen was right. You csn not have uveitis and.just drop steroids with inflammation still present. I have bilateral uveitis right now. Had all the tests aNd am negative, but, i have Hashi thyroid and psoriasis. I see an ocular immunologist who thinks this may be causative...or it is idiopthic for now. Getting better each day. Doing a slow taper off oral prednisone and Durezol. dr. Hagen, they have me on lotemax ointment at bedtime. You think thst sounds ok in addition to 3 drops durezol throughout day? I am in week 4 of this nightmare.Doc said plan on 8. I was on 40 mg. oral prednisone initially for posterior involvement and down to 15 mg daily now.

[JohnHaganMD]

Yes it sounds like standard therapy. You are fortunate if you are under the care of a eye MD that specializes in uveitis. Not every community has one. I love Durezol its fantastic for ocular inflammation

JCH MD

[Hudsongrl]

Just leaving you a follow up. Eyes quiet since Dec. 28th. Been off durezol for a month. Still weaning off oral prednisone. Down to 5 mg./ day. Thankful I have improved...vision is good again.. I have a wonderful ocular immunologist helping me. Thank you for your response.

[JohnHaganMD]

Thanks and best of luck.