is anyone else allergic to ALL the eye drops? Had xalacom and xalatan for years, no problem. Then changed several times and ended up with cosopt and monopost. Eyes became swollen, red itchy. Changed to preservative free with the same reaction. Have retried most of the others with the same result. It only takes 2 drops in each eye and 10 days to recover. Feel very patronised by eye department as they say no one is so allergic! I have taken photos and put the drops in before an appointment so they could see. He said ‘oh dear, we will try going back to xalatan’. I had the same reaction. I have had laser treatment, pressures now around 20 each time. They talk about surgery as I ‘won’t’ use eye drops but I am reluctant as have no visual problems. Is anyone else in this situation? I dread every appointment.
allergic to eye drops : is anyone else allergic... - Glaucoma UK
allergic to eye drops
Hi Islandhome,
Yes it's difficult isn't it.
My glaucoma diagnosis came too late for my right eyed to be saved, but my left had no signs of glaucoma (the term I believe is glaucoma suspect) but as pressures were rising Moorefield's wanted to operate as a precaution.
The operation was then cancelled due to COVID so I had some time to make a decision. Do I risk an operation I maybe don't need or risk sight loss down the line?
I decided to get a second opinion and saw a Moorefield consultant privately, who was able to access my NHS records. After a vision field test he confirmed there was some sight loss in that eye, and my IOP was now up to 30. When I arrived for my rescheduled MIGS shunt insertion some weeks later my pressure was over 40, so I decided to go ahead with the procedure to prevent any further damage.
After reading many posts on this forum it seems every doctor has a different view as to what constitutes dangerously high IOP, and every eye is different. Having said that I don't personally know of any other condition where you as a patient have to make such difficult, life changing decisions with no real support, and limited medical knowledge.
When is your next appointment scheduled? I can tell you that after having the surgery I felt instant relief that I no longer had that decision to make, and my IOP is now stable at 11.
I am a glaucoma "Buddy" so you can ask to speak to me if you feel that would help. Take care🙂
thank you for replying. I am having to postpone my next apt (thank goodness!) as I will be away so probably January now. I think if my pressure was as high as yours and I had lost sight in one I wouldn’t hesitate but 19/20 is only high end of normal and, although fov at hospital shows some suspect areas they are never the same twice, I just can’t do their test. My last at opticians he said it was better than the one 4 years before. What I find most difficult is being spoken to like a recalcitrant 2yr old who won’t take their medicine! They won’t show me the series of fov tests or the optic nerve damage progression just “it’s got a bit worse”. Last time I said asked how fast it was deteriorating and he said very slowly so as I am 74 I am tempted to think I can see it out anyway. I don’t think I am going to allow surgery just yet, I just wish they would let me get pressure checked at the opticians once a year and go back if there was a problem. Thank you for reading my diatribe, it is good to get it off my chest! I am pleased it worked for you, it is so stressful.
Why can't you get your pressure checked at the optician?
I can and do, also do field of vision there but results are always dismissed by the hospital as not likely to be as accurate as their superior equipment so I have to keep returning for hospital appointments.
Understood.
Take care and good luck for your next appointment🙂
thank you.
I am in the same exact situation. I am waiting for the results of my SLT. If it is not low enough, I am going to advocate for MIGS. Life is too short to put up with red, sore eyes.
what is MIGS?
Minimally Invasive Glaucoma Surgery. It covers just about everything besides trabs and shunts. There are several options and the technology keeps advancing.
doesn’t seem to have progressed beyond trabs locally! I will keep checking! Thank you.
You can check my previous posts as there may be information you find useful if you do have MIGS at a later date.
Hi Floaters,
If you haven’t seen my posts I had a shunt inserted and everything is going well so far; IOP from 42 down to 11.
As you say less invasive, faster recovery time and fewer post op visits🙂
hi toby, how is your sight and pressures now?
Toby, I have followed your posts and they have given me much hope. It is sad that I have learned so much from this site as opposed to all of my doctors. They are so busy. I’ve learned you have to advocate for yourself. Thanks.
Hi Floaters,
I’m so happy to hear my posts have been helpful. At the beginning I was so shocked by the diagnosis that I couldn’t take anything in. As you say, appointments are so rushed, nothing is explained and, if you’re anything like me, you just want to get out of the hospital!
So I started taking notes during appointments and looking things up for myself afterwards. This allowed me to ask more questions and be more confident during consultations; I now take a list of questions in with me so I don’t regret not asking something in the limited time I’m there.
As I said I’m a glaucoma UK Buddy so always here if you want to talk. Take care.
Toby I'm the one with title mixed up diagnosis in my title. But as you are a buddy just wanted to ask you as I plan to start on Monopost eye drops this weekend it clearly says if you have dry irritated eyes do not take?? My Consultant did not say this and did thorough examination on Monday. I don't have Glaucoma as yet..... high intraocular pressure so she said preventative. Nervous to start them when it clearly says not to in leaflet. Probably better not reading it! Thank you and appreciate any feedback. Emer
I sympathise- sometimes it feels like the health professionals are not listening - the patient knows their own body better than anyone else! I can confirm that preservative free Trusopt causes allergic reactions- I did a mini experiment on myself that proved it. Luckily my consultant believed me. I too have tried every type of drop and currently on ganforte and disease stable. I am younger than you but based on accumulated field tests my consultant tells me I have a slow trajectory. You should be able to get a similar analysis. Good luck and all the best.
thank you. Total frustration! I wonder by how much stress increases eye pressure! 😵💫😵💫😵💫
Hello. I am mega allergic to all drops except Monopost. Like you it takes one dose to elicit a reaction, and inevitably a trip to eye casualty for steroids before my eyes settle. As I have the option to be seen as an emergency at our eye casualty, my glaucoma team have seen for themselves how awful it is. At its worse my entire face puffs up, my eyes are on fire and I can barely see. Then my skin cracks and becomes extremely sore. Likewise it does mean options are limited. I'm no expert but surgery may be a good option for you and there are many options which are low risk. There are great webinars about this on the Glaucoma UK website. Sadly as I have advanced ACG and surgery is deemed high risk due to the physiology of my eyes and damage to my optic nerves. I feel your frustration and pain.
the only option for surgery I have been given is the tube one which I don’t fancy at the moment. I may have to ask to be referred elsewhere I think. I will do more research into other options first.
Hello... I have a bad systemic reaction to all drops except brimonidine which aren't that effective. They all make my asthma worse. Like you the ophthalmologist has been very dismissive of my reaction. Luckily my eyesight is perfect and visual fields fine.
However, the outcome has been that I have had MIGS in the worse eye where the pressure was 32 and the damage was worsening. This took the form of something called a Kahoot dual blade procedure together with cataract removal. The procedure was pretty straightforward and painless. After an initial few weeks when the pressure did not reduce, once I stopped using the steroid eye drops (given to reduce inflammation) the pressure normalised at 16.
For the moment they are not going to do the other eye as it is stable with a pressure of 22 but I am having 6 monthly checks.
It's true the optician's way of measuring pressures is not so accurate and they don't do all the other tests they do in the glaucoma clinic to measure progression of the disease. I wouldn't be happy just having an annual check at the optician.
as mine are stable at 19/20 I am not sure why they are hellbent on surgery. Every 6 months wouldn’t be too bad but I am back every 6 weeks which I find very stressful.
Islandhome, I Have had the exact same reaction to almost all drops, including the preservative free. I’m now on Timolol 2Xdaily and have had no reaction until a couple of weeks ago. My Dr. Took me off all drops until my eye got better, then started back 1 time a day. I’m now back to 2Xdaily. I have started putting me kind of oily barrier (I’m using a tiny dab of A&D ointment - basically diaper rash ointment!) under my eye before putting drop in, I then put the drop in while looking straight up, hold my tear duct shut for 30-40 seconds, then keep my eye closed for another 30-40 seconds, then carefully use a tissue to wipe any excess from around my eye and especially off my eyelashes. So far, I’ve not had any other problem.
will give that a try, good to know I am not alone, I seem to be dismissed as overreacting!
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