Glaucoma & dry eye

[abbygirl]

Karjade,
My appointment went well..my pressure was 17 which my doc thinks is OK. I only have high pressure in my left eye due to several complicated eye surgeries. I use Timoptic in Occudose which is BAK free...insist that you have a preservative free drop!!! My eye doctor had never heard of this drop that I am on until I TOLD him about it!! This seems to be one of the few drops that I can tolerate because the other types cause anterior eye inflammation for me. He wants to see me back to get a good look at my retinas (I am very nearsighted) and look at my optic nerve.
I also got a sample of a drop called Systane Balance which has an oil component to it which is supposed to be good for those with MGB. So far, I am liking it!!

[Karjade]

Abbygirl
I am sure that is what I need BAK free. Rebecca put something about benzalkonium chloride which is a preservative and is toxic to the cornea in glaucoma drops. She said to ask for preservative free or milder preservative. She thinks it is terrible that people are using BAK on a daily basis in the glaucoma drops - this is bad stuff. I have written this down and will take it to the Glaucoma Specialist when I see her. Both my glaucoma drops contain BAK so no wonder I am suffering. It has been very hot today and my eyes have been bad - not sure what to do with myself. I am sure that these drops have taken the surface of my eyes and I am now suffering with allergies to the pollens from the grass and trees. I have had Systane with and without preservatives but I need something thicker and more lubricating but I hope it works for you. We just have to keep trying everything - there must be something out there which works for me.

[Rebecca Petris]

Unfortunately it is occasionally the case that the BAK-free glaucoma eyedrops currently available may not always control one's eye pressures sufficiently... I know of a few people stuck in that situation - but hopefully these will be fewer and fewer as more BAK-free options come available. But as abbygirl mentions, far too often the glaucoma doctors are just plain not aware of the OVERWHELMING amount of literature showing the toxic effects of chronic use of BAK (including this recent one about the vicious cycle people get into with BAK), or of the BAK-free options that ARE available. Sometimes it's up to us to educate them.

[Karjade]

So where do I go from here? I received a copy of a letter to my doctor from a Registrar I saw four weeks ago and it said I had to continue with the day time drops Azopt because Zylatan at night is not keeping the pressure down. My eyes are bad enough without taking Azopt and I am scared now not to take it - I feel like my life is over! Sorry to be such a depressive but I am having a bad day today with my eyes and I just can't cope anymore. Nothing is working - no ointments or drops. I am still waiting to see a Glaucoma Specialist which will probably not to until June.

[abbygirl]

Karjade..Hang in there!! It WILL get better. I have been there and it is no fun but you will find the best mix for you. I have found that I must keep my eyes moist at all times...sometimes I need drops every hour and sometimes I can go for half a day without. The KEY is to make sure your eyes are well lubricated before you put the Azopt drop in. Use whatever drop works for you and I find if I use my lubricating drop and then a cold rice baggie my eye begins to feel better..wait 15 minutes after the drop and then use your Azopt. Make sure you use your finger to hold the puncta closed so that the drop is not lost and/or gets in your system. Wait another 15 minutes and instill your lubricating drops again. Try this!! If my eyes are really dry I will use the rice baggie longer and/or use more drops.

[Karjade]

Thanks abbygirl - I will try. I thought once I stopped the daytime drops my eyes would get better but they haven't - have the glaucoma drops damaged the film in the eye permanantly or will it repair itself? If my eyes do not get better in the next couple of weeks without the drops I will re-start the daytime drops because the pressure will probably have gone up by then. I will try the cold rice bags. Thank you again for your support xx

[abbygirl]

Karjade- I doubt that you have really damaged the film on your eyes permanently...are you taking one drop?? Am or PM?? When do you have your pressure checked again? Take this time to really baby your eyes to get them back into tip-top shape. This might take awhile (as in weeks/months) depending on how dry you are. At one time, I was taking 4 or 5 different drops (all with BAK) PLUS an oral (Diamox) and my eyes were in sad shape..they are MUCH better now and I am down to the one BAK-free drop.

The oral pressure medication (Diamox) really worked to get my pressure down and it gave me a break from the numerous drops. It is usually given as a last resort but it let my eye heal.

[eye_allergy-kids]

anybody have any clue for this link

http://www.yourlawyer.com/topics/overview/zithromax

[Karjade]

Abbygirl I am just taking Xylatan glaucoma drops at night. My eye pressure was 16/17 last week so the Consultant I saw privately told me to leave the daytime drops alone until I see a Glaucoma Specialist (privately again) in June. However, I did see someone 4 weeks ago as an emergency and he wrote to my doctor saying I had to continue with the daytime drop but I decided to stay off them as the Consultant said until June and then I will know if the pressure has gone up. I am having an HRT scan and field vision test on the 1st June so it makes sense to see the Specialist after this date. I have been using Celluvisc eye drops today plus Hylo Forte - I am trying to get some small wheat bags to keep in the fridge to cool the burning down. I have tried to relax a bit today because I know it is not doing me any good keep getting in a state. I seem to be having a good couple of hours and then not so good but I am really trying not to panic. I have never heard of Diamox but it sounds good if it can get the pressure down without taking the drops for a while - I wonder if we have it over here. I will certainly ask about it and also about laser treatment when I see the Specialist. I think I need to stop the drops altogether to let my eyes heal because they are so sore and stinging everytime I put the glaucoma drops in. Did you get any side effects from this medication?

[abbygirl]

Karjade- you are lucky you can use Xylatan..it is supposed to be one of the best drops to lower pressure. I think your plan is a good one and I like Celluvisc too.

Diamox does have side effects..some of them not so pleasant. It is a diuretic so you drink and urinate alot plus it alters the taste of some foods. It was a lifesaver for me and I was on it for 7 months!! My pressure would spike into the 40's so the Diamox was really necessary in my case. Just take one day at a time and it will work out!!

[Karjade]

Just ordered some wheat eye bags off the internet - I hope these work for me. Had a better day today - it has been two weeks since I have had the daytime drops and one Registrar from the hospital told me it takes three weeks for the drops to completely get out of your system. I will then know if it is the drops making my eyes dry and if the pressure has gone up. I can tolerate Xylatan on its own but when I had to take Azopt twice a day as well this is when I started to have problems with my dry eyes. I will mention all this to the Glaucoma specialist when I go.

[littlemermaid]

Karjade,
http://www.medicines.org.uk/..glaucoma
Just in case you've not found preservative-free glaucoma eyedrops yet, there's a contact for current info here http://www.glaucoma-association.com/...-shortage.html.

[Karjade]

Thank you littlemermaid - I will research this website. I am having good days and bad days - the pollen is certainly affecting my eyes as well. My eyes are stinging most of the time and it is driving me mad. I am not sure if it is the dry eyes or pollen - have you any suggestions for stinging eyes?

[littlemermaid]

Hello Karjade, I think we're all using normal saline eyedrops and wraparound sunglasses/goggles, especially walking the dogs. That's what LM does - she walks dogs for pocket money, tree pollen is particularly bad this year in our Chiltern beechwood/grassland combo. Are you still waiting on this glaucoma consultant for PF eyedrops? Please consider jumping the queue by calling it 'drug reaction to eyedrops' (phone or email the glaucoma consultant secretary) if it's getting worse (hug)

[Karjade]

I am still waiting to see a Glaucoma Specialist (privately). The other consultant I saw said he was going to write to her but I have not heard anything yet. I have HRT eye scan to check the optic nerve at Eye Department on the 1 June so I will wait until I have had that and then I will chase it up. It is three weeks since I had the daytime glaucoma drops but it has not made a lot of difference - I am still on Xylatan at night so I suppose these drops are keeping the eyes dry. I am not coping very well with it all and still want someone to wave a magic wand and make it all go away!! I am definitely going to discuss preservative free glaucoma drops with her when I get my appointment but Rebecca did write that they may not work sufficienly well enough to bring down the pressure. I have printed off about preservative free drops from the website you sent me details of and will take it with me. I just don't know what else to do.

[glenda]

I am having laser for my glaucoma in my right eye on June 12. My optho says I am at high risk due to narrowing tubes. I would prefer the laser than drops. I put in alot of drops during the day for dry eye. The only thing I can be thankful for is that my glaucoma risk was discovered due to my developing dry eye. It is the first thing the Opthamologist noticed.

[Karjade]

Glenda
You are very lucky as I was when my optician noticed I was missing things on my test. I am going to ask about laser when I go next week because I was the same putting in glaucoma drops three times daily plus dry eye drops every two hours. I felt I could not go anywhere because of the drops and not wear makeup as the drops washed it all away. Is the pressure in your eyes high and have you only got glaucoma in one eye?

[Karjade]

Got a date to see Glaucoma Specialist which is on the 11 June at 9.00 am. Having HRT scan and field test tomorrow so the results will be sent to her in time for my appointment. Will discuss dry eye symptoms with her as well and see if any more suggestions she can give me. The pollen is really affecting me at the moment and making dry eyes worse so I am wearing wrap-a-round sunglasses all day and evening which do help.

[glenda]

Karjade,

I am at risk for both eyes but right now my right eye is most at risk. The opthalmologist has not suggested eye drops, he says because it is acute angle glaucoma, the laser treatment will cure it. The pressure in my eyes is not at a high level yet.

[Karjade]

I have got normal pressure open angle glaucoma and my right eye is the worst. The optic nerve is damaged which is frightening because the pressure is within the normal range but maybe still too high for me. As I have got mold asthma I have to have daytime drops and night ones but the overload of drops has given me severe dry eye. I have stopped the drops in the day for the last four weeks until I see the Glaucoma Specialist and then see what she suggests. I am having a scan on the optic nerve today and field test and hopefully I will be told today whether the pressure has gone up. What is acute angle glaucoma?

[littlemermaid]

When you're in there, Karjade, keep asking all the questions and, if you're the stiff upper lip type, let them see your distress. Try not to come away with unanswered questions. If they don't know the answers, they should bump you up the qualification and experience scale until you get where you need to be. If they don't know about eg PF drops, say 'Who should I ask about this?' Maybe try, 'Is it safe to wait .. wks until I see the glaucoma consultant again?'

[Karjade]

Went to have a HRT test and field test this morning. She said my right eye - the optic nerve has slightly more damaged since last year and the left is about the same. I had a field test but I am not sure how I got on until I see the Glaucoma Specialist. I have been off the daytime glaucoma drops for just over four weeks and my eye pressure today was the same at 17 in both eyes which is good. The range is 15 - 25 but I need to be near 15 and not in the higher of the normal range. Until I see the Specialist whom I am seeing privately on the 11 June at I don't know anymore but I will ask lots of questions. If I waited for a NHS appointment I would probably have to wait months and I cannot do that. My dry eyes are improving daily but only because I am off the drops in the day but still taking night ones. If I have to go back on day ones I will definitely ask about PF ones but I am hoping because the pressure has not gone up she might just monitor me. I cannot go through severe dry eyes again because these last few months have been hell - I would say they are moderate dry now but I just want to get back to normal. I don't think it is safe to wait months for a NHS appoint so that is why I am paying £140 to see her privately and if necessary I will pay again to see her in perhaps six months to be monitored. I realise now how important your health is and I will pay anything to keep well.

[littlemermaid]

£140 is normal for consultation. I am finding if it's a private hospital clinic set-up they steer you into buying their slightly overpriced prescription meds. The local pharmacist is cheaper even on private prescription. Or the NHS GP could even prescribe what you need if they wanted to. Even if it's specialist PF drops, all you need is a willing pharmacist who enjoys an online challenge (Lloyds do this for me).

It may still be possible to queue-jump into the Glaucoma Consultant in the NHS by calling it 'drug reaction to her prescription' and chasing up the Cornea Consultant's opinion letter. I know how you feel though, sometimes it's just easier to pay the *s.

If I waited for a NHS appointment I would probably have to wait months and I cannot do that

I am thinking you must also book and keep all your NHS follow-ups for Glaucoma and Cornea in parallel. It's much safer in the NHS clinics with the team, and then you've got ongoing regular NHS monitoring and notes if you need a procedure. In private practice they charge for every single last swab and basic test, then, without insurance, the bills get mind-blowing. Eg eye pressure and visual field can even be done in a good co-care high street optometrist (see above how to find one) or, better, an 'any qualified provider' NHS eye clinic. Mostly in a large hospital their equipment is the best although sometimes the private practice uses that out of hours anyway. I try to do 'consultation for advice' only in private practice - phone the secretary beforehand to ask her to pull the NHS notes for the consultation, esp today's monitoring. It's caveat emptor 'buyer beware' in private practice although you have some little protection from whatever set-up you're in, unless it's a wagon at the county fair (see the recent PIP breast implant scandal and how different clinics responded).

So if you do need any procedures in future, unless it's quick and easy, I'd consider doing that NHS where there's 24/7 backup and post-op monitoring, especially if there's a smart new local NHS provider clinic. Just my thoughts.

Any local advice needed, try Patient Liaison but choose the adviser carefully, some of them are good.

[Karjade]

If I need any treatment eg laser I will go on the NHS. I am just going for advice and a consultation and she will have my results from today which were all on the NHS. I am still on the waiting list for my own consultant on the NHS but I will probably have to wait a few months for that one. I just cannot sit back and do nothing so if I have to pay - so be it! I would have been so happy today if she said the optic nerve damage had not changed but it has in the right eye. I just don't know why when the pressure is in the normal range - but I was told that if I could get the pressure down to 15 that may be normal for me. However by doing that I will have to take daytime drops and it all starts again - allergies and dry eye!! I will ask all the questions when I go on the 11th. If she tells me what drops I could try I am hoping I can get these on the NHS but I will see what she says. I am still playing around with my dry eye drops - I am finding Hylo-forte too thick and it leaves a film over my eye. I am using Celluvisc 0.5% which I seem to be getting on with and use Lacrilube at night but this is very thick and sticky. I have been buying Celluvisc now because my doctor will not prescribe Hylo-forte and Celluvisc but if I give it a few weeks I will go back to him and discuss which is better for me. What is a Patient Liaison - is that at the hospital?

[littlemermaid]

Yes, Patient Liaison Service - PALS - either paid or volunteers. We are using Hylotears, which is less thick. I'm amazed the GP won't prescribe Celluvisc + one of the hyaluronic acid eyedrops - I think they are standard in the NHS these days.

Have a lovely Jubilee weekend walking the dogs!

[glenda]

acute angle glaucoma can happen when the ocular pressure in your eye rises due to a blockage in one of the drainage tubes by the iris closing it.

[Karjade]

We have just come back walking the dogs soaking wet!! However nice and cool for my eyes - looked stupid wearing wrap-around-sunglasses - we did not see many people because they are not daft enough walking their dogs in the pouring rain!

[Karjade]

My eyes are burning nearly all day - is this due to dry eyes and if so can anyone suggest something to stop it. It is awful! I am using dry eye drops and sunglasses but nothing seems to be working. It has been bad these last few days and seems to be getting worse. I would be grateful for any suggestions. Thank you.

[Karjade]

I went to see my Glaucoma Specialist yesterday. She had a good look at my eyes and told me I have Blepharitis disease and this has been causing my dry eyes, blurred vision, burning and that is why no dry eye treatment is working. Why has nobody else picked this up?? I went to see my Consultanant privately a few weeks ago and he did not pick it up. I am relieved to find out why my eyes are bad but she said it will take a few months to get it under control. It is not cureable but treatable. Once again I went to my doctor for the medication for this and he would not prescribe it - said not on his lists. I tried to buy it but only on prescription. After an hour or more at the doctors he did write me out a prescription reluctantly but Boots the Chemist did not have it in stock. Life is never easy! My eye pressure was only 14 which was brilliant so she told me just to take the night time drops only. I have now to read up on this Blepharitis because I have never heard of it - it is something to do with the glands in the eye lids not working properly and getting infected. I have to bath the eye lids and put heat pads on the eyes to stimulate the glands. I am going back to see her in three months privately but yesterday seeing her was worth every penny.

[heyjude0701]

Karjade, I'm a late comer to this conversation, but as I am reading through the thread, I am wondering if there is a reason that you can't have laser surgery for your glaucoma. I was taking glaucoma drops for several years, and having trouble with blepharitis, red itchy eyes. The ophthalmologist I was going to did not believe in laser surgery to lower the intra-ocular pressure. Then I changed ophthalmologists to one who did laser surgery on the trabecular meshwork to lower my intra-ocular pressure. I had it about five years ago in each eye, and it successfully lowered my pressure and the dryness and itchiness in my eyes from the glaucoma drops went away since I no longer had to take the drops. I needed one more laser treatment in my right eye last year because the pressure started to rise again, just in that eye (that one has intermittent closed angle glaucoma; the other eye has open angle glaucoma).

Now, five years later, I have developed chronic dry eyes, but I think I got a five year reprieve from not having to take the glaucoma drops.
Judy