Newbie here. I’ve been diagnosed with glaucoma in my right eye and high IOP in left since 2022. I’ve been on Monoprost drops in both eyes since ‘22 and they were working fine as far as I know. I’ve had a yearly appointment at the hospital, which is a virtual clinic ie no doctor. My pressures were up considerably since last year. Practitioner said I’d have to change drops. I insisted on seeing doc, which didn’t go down well 🙄. December is the earliest appointment apparently.
I’ve had minimal side effects with the Monoprost, a bit of stinging and blurred vision on waking. I have chronic fatigue (ME) and low blood pressure. I’m very anxious about the side effects of different types of drops, so would welcome any feedback from forum users on their experiences.
thank you.
KMcG
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KitMcG
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Hi - sorry to hear about your issue with the virtual clinic although as this seems to be the way most eye departments seem to be going, I guess we do not have much choice. Like you I was on Monopost for several years until they stopped working for me. Since switching to Fixtapost though I have had no serious side effects - dry eye has got a little worse but I think that is as much to do with age as I have had it for some years anyway - pre glaucoma. I really don’t think you should be worrying about side effects until you are using the new drops - like all medication some work well while others might not. You may just have to use what is prescribed but go back immediately if you get serious adverse effects. I’m not sure anyone can predict side effects although it would be great if they could! Sorry for not being more helpful but hope it goes ok for you.
Thank you. I would like to talk through options with the doc. I don’t think that’s too much to ask. I even looked at going privately to Moorfields for a consultation, but even they have mixed reviews these days!
I see you were thinking about going for a private consultation to Moorfields. Do you live in the Midlands area by any chance? If so, I could recommend my chap who is very good - he used to be at Moorfields, but now works mainly in Birmingham and the surrounding areas. When I was at one of his clinics last week, there was a lady who had travelled all the way from Yorkshire to see him! I think that is a good recommendation, don’t you? Hope you manage to get things sorted out. Regards, Gill
Thank you. I will have my list of questions this time. Who knew when I saw the consultant the appointment after my diagnosis, that that would be the first, last and only time I’d ever see her! And she was on the phone most of the time as she was on call! ☹️
Dear Gill - I'd be interested in the details of your Birmingham consultant please - I'm not too far from there. Do you need my details privately?Many thanks
Hello Reformer, Good to hear from you! My consultant is Mr Imran Masood - look him up! He even has several articles on YouTube! I first heard about him through my NHS Glaucoma consultant at St Cross Hospital, Rugby. Because of my numerous eye problems (!!) he recommended him as a “top man” for the job. I’ve been seeing Mr Masood for several years and at the end of April this year, he performed a Paul Tube implant in my right eye. I am fortunate in that I have been able to see him as a private patient at his rooms at 38 Harborne Road, Edgbaston, Birmingham, but he does also work for the NHS at the Birmingham and Midland Eye Centre. In fact, that is where he did my operation. I had it done privately (at great cost!) mainly because I wanted to be sure HE would be doing the implant and also I did not know how long I would have to wait if I went NHS! If you wanted to see him, I know he also works at several of the clinics that are covered by health insurance. For example, Spire Healthcare, Bupa also, I think plus others? Unfortunately, I don’t have such insurance so had to fund myself but well worth it as our eyesight is so precious. I’m beginning to sound like an advert for him, aren’t I? When I saw him for a check-up yesterday, I told him I kept recommending him! It will be 18 weeks on Sunday since my op. He seems very pleased with how it’s gone, which is such a relief to me as you can imagine. I hope this all has been of help. Please ask if you have any more questions. I have recently become a “buddy” and had a long chat the other evening with a lovely lady who is due to have a Paul Tube fitted next month. Kind regards, Gill
Have you tried phoning your consultants secretary - sometimes they can be very helpful in getting you an earlier appointment? I had to phone the eye clinic to get my annual appointment as they didn’t send me one and I asked to see a doctor rather than the virtual clinic. After consulting the secretary, I was assured that if any issues over my pressures caused concern they would walk me from the virtual clinic to see the consultant. My experience is that you have to be proactive otherwise you just get bogged down in the system.
Sorry to hear about your troubles. You must be very worried and you should be able to talk to your Doctor to have your questions answered.
As you have mentioned it, I would see a Consultant who specialises in glaucoma privately. While Moorfields might be the centre of excellence, there are many really good glaucoma specialists in all areas of the country.
Your local private hospitals will tell you which Ophthalmologists are glaucoma specialists and you can research each of them to find out which one you would prefer to see, If you rate your NHS consultant, you might find that she does private work and you could consider her alongside othe consultants in the area.
After a pretty bad experience in the NHS system I changed to Private consultations years ago and it was the best thing I did. I have been given time and detailed explanations of treatment options, my fears and worries have been listened to and taken into account, it has always been understood that if I needed surgery or expensive procedures I would need to go onto the NHS system and, all in all, I am convinced that it is the private consultants who have saved my eyesight. Time with us patients is so important to us.
Have a look around, speak to your local private hospitals/clinics and perhaps you will find a claucoma specialist who you can see and discuss your problems indepth with you in the near future.
Thank you Peg. I did check this out before I considered Moorfields. There isn’t anyone in the North East. Even my own hospital, supposedly one of the best eye departments in the country at one time (Newcastle), doesn’t have a single doc with even a mention of glaucoma, let alone a specialist on it. I’m thinking of switching to another local hospital who does have a glaucoma specialist. As far as I know he doesn’t do private work, or at least I haven’t found him anywhere. I probably should sort out the immediate problem first though.
My consultants have always written to my various GPs telling them what to prescribe for me (drops and tablets) and I've not had any trouble. Just the same as any consultant would do for any other specialty.
BTW, I just had a quick google and I couldn't believe that there aren't any glaucoma specialists in the North East. The nearest I could find was Mr Norman Litvin in Yorkshire (and I thought I was badly off living in the wilds of Suffolk!)I don't konw exactly where you are but as you considered going to Moorfields, would you consider a trip to Edinburgh instead? It would certainly be easier to go north using British Rail and there is no shortage of very well qualified glaucoma specialists in Edinburgh and a quick look shows appointments available in first half of September, even on a Saturday. I realise that NHS Scotland and NHS England are different bodies, but as you would be going privately, I can't see any problem with that. Anyway, something for you to think about and I wish you luck.
Before you go and spend a lot of money on private treatment, just check out what the principles are for initial treatment if diagnosed in the early stages which is often SLT laser treatment and then introduction of different medications if and when needed. I would not be spending money on private treatment until you actually know that you need the sort of treatment that cannot be provided by the NHS. While being given a change of drugs after a virtual appt might seem casual it isn't. Its based on years of analysis of thousands of patients. I do think that if a new drug is initiated that actually that is worth a phone call and that people should be given instructions of what to do if they cannot tolerate the drugs, especially as anyone at a virtual clinic is supposed to be stable. [I don't think that guidelines are being applied correctly but thats another story]Typically treating open angle glaucoma is like playing a football match that lasts 20 years. Closed angle is a different story.
if you live near Hull, the spire private eye clinic I’ve been using as nhs wouldn’t do SLT and I didn’t want to go for drops, has a Mr Craig Burnett and a “side,kick” who have been very good over several yrs, albeit expensive.
thank you for your response Nikul. I need to get to the bottom of why SLT hasn’t been offered. I’ve done a bit of research of the private clinics and surgery of some sort does seem to be the favoured route - no doubt because the docs can pocket a big fee, and drops as we’ve discovered can be a bit of a lottery as well as coming with a raft of problems if their own. At the moment I’m pressing the nhs to give me an appointment and have also booked in with my optician so he can send an urgent letter if pressures are high. But no avenue closed at the moment.
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