Hello all you lovely people. Yesterday I had hospital and had to do the visual field test this is my 5th in a year. I then went to see the most lovely consultant. He took my pressures and they were 26 but all of my visual field tests have shown no damage. He said we need to get the pressures down by this time I’m scared. He said I’m going to have a word with the senior consultant. He was gone a while and by this time I’m getting worried. When he came back he said Julie you havnt got gluacoma you have ocular hypertension where the eyes can stand a higher pressure. We still need to monitor you and he gave me new drops and I go back in 6 weeks. He said we can’t say you won’t get gluacoma but we can’t say you will. Your eyes are very healthy. I’m still scared because I was told I did have glaucoma. Also I just want to say I wasn’t going to post about this because all of you have been so lovely to me and I feel wrong in telling you I don’t have glaucoma while you lovely people who have supported me have got it so I’m sorry. I will still continue to stay on the forum and support you all if you let me. Thankyou so much for everything and of course I’m still on a journey as well. Xxxx
Shocked but still scared. : Hello all you lovely... - Glaucoma UK
Shocked but still scared.
That is excellent news Julie !
It seems that they will continue to monitor your eyes to help avoid any progress towards Glaucoma.
Sadly apparently about 50% of Glaucoma cases are undetected, so we are the lucky ones receiving care and treatment.
It is always good to hear some positive outcomes,
Happy Christmas!
Thankyou so much muddledme Happy Christmas to you to. Xxx
A friend of mine is in the same situation, she's been using drops and been monitored over the last couple of years and so far she hasn't developed Glaucoma
This is good to know Thankyou Jennymary
Good to hear that you have finally been told that you do not glaucoma after all. Wishing you all the best with your new treatment. Have a lovely Christmas. x
Thankyou Engima . Have a lovely Christmas xx
Great news Julie , good luck with your new eye drops x
Thankyou Lovemy2woofs . Hope you have a Lovely Christmas xx
You too 🎅🏼☃️ Xx
Thank you for telling us. It is very interesting and good news for you! Please do keep in touch - the more knowledge we all have about our eyes and what might happen to them, the better. Merry Christmas, Julie!
Thankyou mrswaffle . I will stay on the forum. Hope you have a lovely Christmas xx
Hi JulieThis is good news after all that you have been through.
I hope everything goes well for you and you have a lovely Christmas. Please stay on the forum and let us know how you get on. Xx
Ahh Thankyou so much callie77 i will stay on the forum. Wishing you a Merry Christmas xx
That is such good news Julie and I am really pleased for you. I am glad you have told us and it is a shame that you have had to go through all this worry, but at least you can relax now in the knowledge that your eyes are healthy and you are being monitored. Please stay with us, as Mrs Waffle says the more we know about eyes the better and we look forward to hearing from you. Wishing you a very Happy Christmas. x
Thankyou so much for your lovely message I keep thinking they have made a mistake and will still question it again in a nice way when I go back in 6 weeks. I will keep in touch with you all and stay in this lovely group. Hope you have a Merry Christmas xxx
You already know how beyond happy I am for you Julie. You are a big part of this forum and obviously have to stay 😍. X
Thankyou so much Hidden . I can not thank you enough with all the support you have given me. I’m still so scared of this change scared they have it wrong because I got told gluacoma had started but they are the experts and I have to go with it. Thankyou again My Lovely Online Friend. Wishing you and Your Family A Very Merry Christmas. Xxx
I know you are still scared and it's a lot to take in especially after a year of thinking you had glaucoma. You are going to be monitored and any change at all they will be on it immediately. You have lovely healthy eyes at the moment that's the best Christmas present so go with it 👀. You know I'm always here for you and you listen to me too 😉.
Merry Christmas to you and your family too and a great New Year because you totally deserve it x
Thankyou Hidden xx
Ah what a lovely Christmas present you got there! They could have saved you all that worry for nothing a bit sooner though! 🙄 Seriously that’s a brilliant result! And I think you’re allowed to stay on this forum even if it’s just ocular hypertension!😉 Funnily enough you have the exact opposite of my eyes! 🤪 I’ve got low pressures but still my glaucoma is marching on regardless. Still what this does prove Julie, is that we never know what’s around the corner so there’s really no point on giving up or worrying about what might not be. So you see, your news has made me feel just a bit more optomistic! Merry Christmas Julie! X
Oh Thankyou so much for your message. I did see Gluacoma UK have information about Ocular Hypertension so I’m guessing its ok to be on here and I don’t want to leave because I want to support everyone as they have supported me. Your right it’s best not to overthink Have a Lovely Merry Christmas Beecalmed xxx
Thats excellent news Julie, so pleased for you. I have ocular hypertension in my left eye and POA glaucoma in my right eye. I am on drops and my pressures are currently controlled at 14 and 16. I am hoping that my left eye now the pressure is lower it wont develop into Glaucoma. You are being closely reviewed and thats good and will hopefully get your pressures down. You can go years with ocular hypertension without it developing into Glaucoma if at all. So hopefully that will be you.
Thankyou so much for your message. I hope your pressures stay good for you xx
Thankyou I’m hoping this to just scared because of the amount of different things I’ve been told. Even saying gluacoma had started it’s all very overwhelming and scary to be honest. I should be jumping for joy but I’m not because I feel I’m being told conflicting things and I didn’t mean anything nasty about our NHS because they are wonderful but it all seems strange. Th we y just went by the visual field tests xx
Hi Julie the best christmas present ever.... how confusing for you though. why did they say you had glaucoma in the first place. Its usually when there is damage to your eyes it becomes glaucoma. And how many of us are being misdiagnosed and given drops that we may not need as our eyes can withstand this pressure without damage.
I think the problem is they only have pressure to go on and each person is individual. What drops are you on now? take care valfrance
Hi valfrance ues I’m so confused and scared to be honest I don’t feel I can really relax about it until next appointment because I’m so scared they have made a mistake. I was told gluacoma had started I have so many questions I need answering I even went private for one appointment. Apparently it’s because there is no change in visual field tests all 100%. My drops are Timolol twice a day and Alphagan if I spelt that right twice a day so one of each drop in each eye at 7am and at 7.30pm. Actually most drops I’ve been on my pressures were 26 at my appointment. Thankyou for your message and I hope you have a lovely Xmas xx
Hi Julie great news for you however they still have you on 2 kinds of drugs to try and reduce your pressure.
I took alphagan that was not preservative free and then I started researching the drops as my eyes were itchy and always felt like they had grit in them. see below what alphagan is..... it is a good drop to take for lowering eye pressure....here is what is in it and what it is..
'Brimonidine tartrate is a highly selective alpha2-adrenergic receptor agonist. It decreases aqueous humor production and increases uveoscleral outflow'
However, I did not want the preservative kind of alphagan as the BAK in the preservative does not agree with my eyes and also disrupt the occular surface.
I then tried to get alphagan p (purite) that has no preservatives and that is impossible for me to get here in france without a special form, my doctor tried, still no reply. Check to see if yours is alphagan purite non preservative.
I am not taking alphagan at the moment as I am only taking monoprost and I had slt as you know. However I think ahead, and if my slt stops working and I have to go back on 2nd drop I want to know the alternatives for that drop. I am fine with alphagan an alpha antagonist, I do not get along with beta blockers. I would not want to change to a different drug if I have to take a 2nd drop, I just don't want a preservative in it if I have to take it..
I just discussed with my consultant an alternative to alphagan purite that is preservative free. This is a new drug in unidoses that has the same ingredients as alphagan purite and that is called Brimazed UD, ud means unidose as it has no preservative. It contains brimonidine tartrate 2mg the same as alphagan. if you are interested you can show this to your doctor.
horus-pharma.com/gb/glaucom...
i would advise you not take drops with preservatives in them Julie. See below the link... I don't want to frighten you I just want the best for you and anyone on this forum. This article is very informative regarding preservatives.
glaucomatoday.com/articles/...
'Topical therapy is typically first-line treatment for patients with newly diagnosed glaucoma. All multidose ophthalmic medications are required to have a preservative to maintain an antimicrobial environment in the bottle, making it important for eye care providers to understand the effects of preservatives on the ocular surface.1 Unfortunately, most preservatives in ophthalmic medications disrupt the ocular surface and exacerbate preexisting ocular surface disease (OSD).2,3
Benzalkonium chloride (BAK) is the most widely used preservative in antihypertensive topical medicines, and many studies have clearly demonstrated BAK’s toxic effects on corneal and conjunctival epithelium.4,5 Although most antiglaucoma eye drops are manufactured with very little BAK, doses as small as 0.0001% are toxic to ocular tissue.5
You are also taking timolol... see below this is a beta blocker.
'Are timolol eye drops preservative free?
For patients who are sensitive to the preservative in TIMOPTIC (timolol maleate ophthalmic solution), benzalkonium chloride (BAK), TIMOPTIC in OCUDOSE is a preservative-free eye drop for reducing intraocular pressure.
Is timoptic Ocudose preservative-free?
Preservative-free TIMOPTIC in OCUDOSE is a sterile solution that does not contain a preservative. The solution from one individual unit is to be used immediately after opening for administration to one or both eyes.
Therefore Julie take my advice or leave it, I would check the following.....
You are taking 2 kinds of drops
1 x alpha antagonist that is alphagan ask them for alphagan purite (no preservatives)
if they cannot give you alphagan purite as them can you have brimazed that is preservative free with the same ingredients as alphagan.
1 x timolol this is a beta blocker (see above make sure it is timpotic ocudose this is preservative free.
They will probably say it is only 0.1% of bak preservative in timolol
They will probably say it is only 0.005% bak preservative in alphagan
However it is still preservative that you can avoid putting in your eyes.
At least you do not have glaucoma, your pressure although high is not affecting your sight and that is great news. However, I would just check your drops as indicated above. take care valfrance
Thankyou valfrance im not back at the hospital for 6 weeks they did tell me there are no preservative free ones of these. But will talk to them about it.
That’s great news Julie. I understand you are still scared as you’ve been given different information, but the most important thing they all agree on is that your eyes are not damaged and your visual field tests are fine. Good to know they are still monitoring you so everything stays that way. Have a wonderful Christmas and give yourself time to take in the good news x
Hi Spanieldoglover thankyou for you message. Even though it’s good news it is a lot to take in very strange feeling worrying if they are right obviously I know the NHS are wonderful it’s just when you’ve been told something for a year and trying to come to terms with it then to been told something else albeit Great News your mind plays tricks. Hope you have a Happy Christmas to. Xx
That's great news Julie, am happy for you that you have something to celebrate 😊 hope you have a great Christmas and New year XX
Thankyou frankthebank Merry Christmas and a Happy New Year to you xx
Good Morning from Thailand,I just wrote a very long reply (then I deleted it ).....and then I read up all the terrific advice you have from the wanderful community here......The best ever news you can expect...It will be all become clearer at your next appointment...... for sure...As someone has mentioned already my opinion is stay away from any Eye medication with BAK....Use Vislube Eye drops before putting the Timolol eye drops...and change to Alphagan P(Preservative free).... Make sure you do Punctual Occlusion correctly...... Begin to enjoy your life, take care of Nutrition and diet!.... Exercise......My opinion.... Begin to live with harmony with whatever is ahead!...
Thankyou for the advice. I can’t change my drops until I see my consultant which I on 31st January but will be chatting then. Thankyou
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