Brinzolomide side effects.

[Maximi]

I rang the secretary at the hospital re side effects of chest congestion and dizziness plus slight breathlessness walking up hills.She said Dr only works one day a week there, so I am waiting for a reply. She said to stop the drops if it's unbearable, until she speaks to him. I have now developed mouth ulcers just a day after stopping them. This is a possible side effect as well, so maybe it's because the drug is still in my system?

I'm really concerned in case he says to continue with them as he won't know about the ulcers yet.

My chest is improving since I stopped them.

I know it's important to get back onto suitable drops but I'm really nervous about what drops will be tried next if not Brinzolomide.

My pressure at my last hospital visit was 26 in both eyes. I had my annual eye test at the opticians this week and pressures there were 22 and 18. So it looks like Brinzolomide was working but hospital measurements are more accurate.

I feel that I'll be seen as a difficult patient if I disagree with any different drops and would just give in even if they caused adverse effects.

Advice anyone?

[Costadelsol]

Hope you get this sorted.

I was on Fixaprost and had the same issues. I was switched to Monoprost and that fixed the breathing issues but 6 months later I am still having dizzy spells. My Opthalmologist said as long as my breathing was fine it was nothing to worry about. That's easy for him to say! The drug details say its a known side effect but he didn't want to know.

I have an appointment with my GP tomorrow and I am going to see what she says. I want to check there is nothing else causing them. I see the Opthalmologist again next month.

[Maximi in reply to Costadelsol]

I'm also on Monopost. Have been for years with no problems. My pressure rose the that's why Brinzolomide was added. Good luck with GP.

[Chinky58]

I was on monopost for 3yrs kept wheezing. Thinking it was allergies. Doc changed eyedrops to fixapost to get pressure down more. Ended up in A & E palpitations couldn't breath etc. Stopped eye drops for 2 months. Could breath properly. Felt great. Went back to docs after 2 mins (earliest appt). Gave me trusopt eye drops. Told him I'd just been diagnosed with mild asthma. So wanted drops without beta blockers . Got home looked on line and not to be taken with asthma... so took for 2 weeks breathing started labouring again. So stopped. I'm sure the eye drops from day one have given me asthma. Off to see doc next Friday. My doctor has given me inhaler to take 2 doses a day 'Fostair' been 2 months and never felt so fit. So hopefully I get eye drops without beta blockers in

[Maximi in reply to Chinky58]

It's a nightmare! They never read your notes.I refused beta blocker drops as I have an overactive thyroid and clinic said to use beta blocker with great caution! All in my medical history at the same nhs trust.

I'm anxious that Dr will still prescribe a beta blocker even though I explained to him last time.

I've been fine on Monopost, they're just not working well enough anymore, so have additional drops.

It may be the preservative in Brinzolomide.

[KieranGlaucomaUK Administrator]

Hi. Sorry to hear about the side effects that you are experiencing. The Brinzolamide will likely still be in your system and could be for a few days after stopping, so it could also be the cause of the mouth ulcers. Glad to hear that your breathing has improved. There are a few different categories of eye drops that they could try instead. Don't think that you are being difficult. Unfortunately, these things happen sometimes and side effects from eye drops are quite common, and it's important to persevere until you find one that works for you.

[Maximi in reply to KieranGlaucomaUK]

Thank you for your reply.I heard back from the hospital yesterday and Dr said to stop Brinzolomide and continue Monopost. He has brought my consultation forward to April (hopefully).

I had stopped Brinzolomide a week ago and thought my chest was improving, but it keeps getting worse, then feeling better intermittently. Mouth ulcers are clearing slowly.

Is it possible that the Brinzolomide is still causing issues a week after stopping them?

[KieranGlaucomaUK Administrator in reply to Maximi]

It can take up to around 10 days

[Hattie2022]

I've been through so many different eye drops I've lost count!I have to have preservative free drops and I'm currently, and have been for long time, on Ganfort. Unfortunately, these are not lowering my pressures sufficiently. I've recently had an iridotomy and have had SLT some years ago.

I'm afraid I might be regarded as a 'difficult' patient because I keep getting prescribed drops with preservative in, and although I agree to give them a fair try, I end up not taking them. Apart from the reaction to the preservatives, I cannot tolerate the side effects of most of them.

A consultant told me recently that they're running out of options as to what drops they can give me. I may be offered some form of surgical intervention.

Although my pressures have been consistently high over the 30+ years I've had the condition, my eyes show no sign of damage and my fields are fine.

Surely, there must be something out there that does the job but doesn't make you feel ill!

[Maximi in reply to Hattie2022]

I'm always amazed when I read the patient leaflet, that the drugs are passed as safe! They can cause so many side effects. My chest still isn't right after coming off Brinzolomide.