Bad reaction to Tiopex gel drops

[Nanacake]

Hello everyone,

I was put on Tiopex as an 'extra' morning drop to add to my brinzolomide 3 times a day and Lumigan at night.

Unfortunately, after using the tiopex for 12 days, my left eye became very sensitive and sore, with pain in and around the eye and then a bad headache above that eye! I tried to carry on with the tiopex but had to stop because of the pain. I have now not used them for 4 mornings and my eye is white again and no soreness, thank goodness! Strangely, my right eye has stayed fine throughout.

Anyway, l wondered if anyone else has had a similar experience?

I think that I'm having a bad reaction to timolol?

The hospital now want to put me on iopodine 1mg, but I'm not sure

about that. They haven't discussed anything with me about any of this, just told me to go to the hospital and collect the prescription from them!

Just to add to everything they already tried me on Ganfort and l had the same bad reaction to that drop after 3 days, but affecting the other eye!

The doctor is trying to get my pressures down to 12, they are currently 16.

Can anyone offer any advice please? Many thanks, Kate

[AlfredV]

I've previously reacted badly to every glaucoma drop tried. For me the reaction was more systemic. I recall reacting to tiopex, and like you, it was after a few weeks of using them. It was a difficult time beacuse I was left wondering how I could be having the same debilitating reaction to completely different types of drops and whether I was actually being believed. My eye pressures were typically in the mid 30s but at times were recorded peaking over 50, which resulted in emergency surgery.

Hopefully they find a solution for you, but don't be scared about pushing back over medication causing intolerable problems.

[Nanacake in reply to AlfredV]

Thank you so much for replying to me. It sounds like you have had some really bad experiences and l hope that you are doing better now. I find Gloucoma a frightening condition and really appreciate hearing other people's stories and comments, as they can be so helpful and understanding.

I will take your advice and not be pushed into using drops that don't agree with me. It has happened a few times now. ..take care, best wishes, Kate

[MadMorris in reply to AlfredV]

Can I ask what reactions you had?

[AlfredV in reply to MadMorris]

I typically had a whole body response. Joint pain, blocked sinuses with swelling, peripheral neuropathy, abdominal pain with constipation, very dry eyes, skin rashes, and a general feeling of not being well. I suspect there were also thyroid issues as I'd have days where I felt I couldn't get warm, which for me is not normal.

Once these reactions started, it would take several weeks to calm back down after stopping the medication.

[Nanacake in reply to MadMorris]

Hello, the bad reactions l have had in the past are very red, stinging, sore eyes. ( Simbrinza and Iopodine) The Ganfort, added in September was awful for me, lasted 4 days but the headache, pain in and around the eye was bad for a few days after as well. Then l had the very same reaction with Tiopex! I'm happy to say that the Lumigan and Brinzolomide I'm currently on and have been using since 2018 do not cause me any problems. I really hope you are doing okay on your drops. Best wishes, Kate

[Littlesnowflake]

I started to develop symptoms after using regular glaucoma drops for several years. This happened with all varieties. I can now only tolerate preservative free drops. I was told that this is not uncommon. I hope this helps.

[Nanacake in reply to Littlesnowflake]

Hello, thank you so much for your helpful reply. Best wishes, Kate

[Islandhome]

I developed an allergy to every eye drop after being ok for years. Very difficult at the hospital, very patronising, until in the end I refused all eye drops. I now take acetazolomide which apparently doesn’t suit everyone but I am fine with it. There seems to be a huge disparity between consultants opinions regarding optimum pressures. At 22/23 they said it was too high. Had cataract surgery and acetazolomide, they are now satisfied with mid to high teens. No one has evert suggested getting down to 12.

[AlfredV in reply to Islandhome]

This sounds like me. I couldn't tolerate any drops so ended up on acetazolamide for a while. I had side effects but only the normal ones expected with that drug.

[Nanacake in reply to Islandhome]

Hello, thank you do much for your helpful reply. In August l saw a doctor in the eye department and he told me that because l have thin corneas, the pressure shown on their tonometer is not precise. They have to up the number on the reading! That's when he said that the ideal for me would be 12....

[Dancebandfancyfloor]

I was on brinzolomide , iopidine and mono post as my pressures were mid twenties . Consultant then added Tiopex as well and my eyes became very , sore, red , puffy and watering ., pressures still mid twenties . . Consultant still wants me to continue Tiopex

[Dancebandfancyfloor in reply to Dancebandfancyfloor]

hi I am on the same combination of drops as you with exactly the same symptoms. my pressures are mid twenties too. The doctor at hospital said they were only interested mainly in getting pressures down and not how sore my eyes were, I’ve just had second lot of slt laser surgery and hoping that pressures have reduced a bit but not hopeful . I am going to ask to come off Tiopex first as all nasty symptoms started with iopidine and Tiopex . My optician agrees and said it’s quality of life that matters at the moment as I spend all day putting in drops and bathing eyes . No time for anything else . My sister is being treated at the same hospital as me for glaucoma and she only has fixapost (monopost/timolol combined )and suffers no symptoms. I think one of the ingredients in Tiopex is the culprit .. polyvinyl alcohol which makes it like a gel instead of a drop . Has anyone any other info about it.

[Nanacake in reply to Dancebandfancyfloor]

Hello, I'm so sorry to hear about all your problems with eye drops. I was put on the tiopex gel drops, preservative free after a bad reaction to Ganfort eye drops, added as an 'extra' to reduce the pressure in my eyes more. I used the tiopex for 2 weeks before my left eye only reacted, sharp pain/ache above and in eye and redness/soreness. I had to stop the drops, like l had the ganfort drops. I felt that it was the ingredient timalol that was the culprit. Through all of this l have continued with Brinzolomide 3 times a day and lumigan at night, which are fine but the hospital keep telling me l have very dry eyes! It's a vicious circle all the time. I wish you well and really hope that they can find drops that suit you. Best wishes, Kate x

[Dancebandfancyfloor]

Thanks for your reply I’m glad that your regime is working for you . I think brinzolomide makes the eyes dry though. I e been given hy Opti drops from the hospital for that and all the info about bathing and massaging the eyes . It’s all so time consuming with all the other drops to out in as well. Yes I was fine on monopost for months . Then I was put in brinzolomide as well. Which was ok for another six months but they felt my pressure wasn’t low enough at 23 which I thought wasn’t bad as it was up in the forties when I was first diagnosed. So clinic added iopidine as well which worked and brought it down a bit but still not happy and added Tiopex too . This is when my sore and puffy eyes really took off. My optician has said I’m allergic to the drops and recommended a second private opinion instead of the nhs consultants . I going to go along and see. I’m hoping like you to be able to continue with brinzolomide and monopost and get rid of the iopidine and Tiopex but I guess it’s all down to the level of the pressures. I’m guessing once the allergy is reduced it will be some sort of that micro surgery if the laser hasn’t worked. Good luck with your regime.