Glaucoma & dry eye

[Karjade]

Hi heyjude. The reason they wont give me laser treatment is because my pressure is normal. The Glaucoma Specialist said when I was on the daytime glaucoma drops they tipped me over the edge to get Blepharitis. I am really suffering at the moment with this - I have posterior blepharitis which is to do with the glands in the eyelids not working properly - hence dry eyes. She told me to use Blephosol every day to keep the eyelids clean and germ free but I am sure I am having an allergic reaction to this. Since using it my eyes are so sore, itchy, dry - worse than they were before. I am trying boiled water at the moment to bath them but don't know if this is enough. I just don't know what else to do - I am going to phone her on Monday to see if she can suggest anything else. I am taking Xylatan drops for the glaucoma at night which sting my eyes so much as they are so raw from everything else I am taking. She asked me what other medication I was on and I told her Flixanase for my sinus. She told me to stop taking that immediatelty as this could contribute to damage to the eyes so I have stopped that. It does make sense as I have been on Flixanase for over five years and it is steroid based and going straight up the nose near the eyes. I am still new to Blepharitis and any help you can give me I would be grateful.

[heyjude0701]

I'm so sorry you have to deal with all this, Karjade. I'm having a problem myself with looking at the computer screen, so I can't read back through all the messages earlier in the thread- so I don't know if this was mentioned, but is there a lab in the UK where they can make eye drops without preservatives? I think there is such a lab in San Jose, CA in the US that makes preservative-free forms of many meds. Would it be possible for you to order drops from them?
Judy

[Karjade]

My Glaucoma Specialist said preservative free glaucoma drops do not bring the pressure down sufficiently like the drops with preservatives. I was ok on Xylatan but they decided to put me on daytime drops as well and this was when all my trouble started. She told me to stop the daytime drops as my pressure was only 14 in both eyes but I seem to be having problems with Xylatan now and have dry eyes and blepharitis through all these glaucoma drops. She told me it could take about six months for the blepharitis to be controlled but whether this will get rid of the dry eyes I don't know. The dry eye drops are not really working but she said they would once the blepharitis is under control. I have had all this for 8 months now but it seems forever. I have to persevere with Xylatan because I have no choice.

[heyjude0701]

So sorry you have to go through this! Hopefully someone on the forum will have some more suggestions, and that there will be new meds coming out or you can find something to soothe your eyes, like warm and/or cold compresses, hot showers, etc.
Judy

[Karjade]

Thank you - I am sure I will get there one day! Everyday is different - one day something might work and the next it doesn't so I just mix things which I am sure is not a good thing to do! I am not going back to the hospital until September and I hope things might have improved by then.

[littlemermaid]

Karjade, Are you comfortable with the tear substitute drops you've got, or are you shopping around?

[Karjade]

Hi littlemermaid, I am getting up cleaning my eyes thoroughly with either Blephosol for the Blepharitis or cleansing wipes, then putting heat pads on my eyes for ten minutes and then massaging my eyes. After that I am now using Clinitas Soothe Dry Eye Relief Drops preservative free which I got from Boots and they are very comforting (at the moment!). I have to do all that two times a day and in the meantime I am using Clinitas Soothe during the day and at night Xylatan!!!! What a nightmare it is but I have got to do it to see if it all works. My eyes are very sore and stinging so I am taking an anti-hystamine but I have read that these can make your eyes dry. Always wearing sunglasses and not wearing eye make-up much but if I go out I am wearing a little No 7 eyeshadow. It is just taking over my life! Lovely to hear from you again xx

[littlemermaid]

Is the oral antihistamine helping with the seasonal allergies?

[Karjade]

Yes they are helping with the sneezing. The glaucoma specialist told me to stop taking Flixanase spray (for sinus problems) immediately as this is quite a strong steroid and could have affected the eyes. She said she is writing to my doctor - I have been on this over five years so maybe this has caused the damage to the optic nerve. My pressure was only 14 in both eyes which is quite low. She told me to use Sterimar and Neilmed sinus rinse for my sinuses which is natural - she also feels all the glaucoma drops have tipped me over the balance for the dry eye and blepharitis. The ENT put me on Flixanase and told me to take it twice a day! My own doctor is useless and I am looking around for another GP who will prescribe things for me and not keep looking at the cost. I am buying most of my dry eye products from Boots or the internet and not bothering to ask him!!

[littlemermaid]

I really feel that steroids imbalance the immune system. Just not quite sure how. Our ophth tapers steroid so beautifully that we can manage on the absolute minimum as, hopefully, the immune system restores itself. So the one or two per week drop of steroid in the eyes stops the inflammation flareups and the eye immune system takes over, hopefully. Have you had any flareup since stopping Flixonase abruptly?

Similar to you. It seemed to me that conscientiously blitzing with Clotrimazole 28 days for a minor fungal infection (Tinea versicolor) on a bit of sebaceous dermatitis caused this curse of periorificial rosacea. I said at the time 'don't you have an antifungal without hydrocortisone?' and got the snappy timewaster reaction. If you show the research, the GP will concur. They know about side effects but don't like to think about it - what they should be doing is listing possible side effects when they prescribe, then monitoring. But they will prescribe for years on the one ENT letter but then the ENT isn't monitoring.

So, GPs. We've seen 7, including a paediatric one. All confused about what they're supposed to be doing on referrals, all confused about what they're supposed to spend their prescription budget on when it's consultant specialist recommendation (eg allergic to eyedrop bases). None of whom have understood the notes, or know anything about the various inflammatory conditions. Despite hospital consultant request/email advice, they have refused: Moorfields for second opinion, ophthalmology second opinion, and, since this Clinical Commissionioning Group and PCT cluster business started last autumn, rheumatology, immunology, neurology, paediatrician. Despite consultant letter requests from the Children's Hospital.

My favourite conversation so far 'we don't know who to refer to, we've only got one neuro and people say he's not very good, we can't advise you to spend money but if you want to go private first and get an NHS acceptance I can write an NHS referral'. I can cope with this now. Plus the lack of notes and current knowledge. But there's a lot of people who can't. How thankful are we for patient forums and Dr Google.

The best bet for GPs has been a modern group practice with a good choice of docs, including some not-bad locums. To be fair, they're all good for different things. And it's easier to dump the non-starters. Our best friends there are the receptionists and secretaries, especially if you give them a laugh. They need it.

If you've got a problem though, skip the GP, go straight to an optician who'll phone straight through to regional hospital A&E Eye Clinic to get you in, with preliminary observations and eye pressure (IOP), unless you're ongoing in the hospital eye clinic with a direct contact. A GP with any interest in ophthalmology is an extremely rare and beautiful thing, glimpsed only after years of trekking through the wildernesses (we've only ever had contact with one once and that was by phone... plus he wanted to charge £180).

Re GP prescribing eyedrops, you need the PCT recommended drugs list and the constraints they're under are revealed http://www.miltonkeynes-northamptons...0Formulary.pdf

As we start to dig, the extent of rationing is revealed http://www.loc-net.org.uk/uploaded_f...ec11_final.pdf. My friend was talking to Dr Top Bod in the BMA about drugs rationing last week and she said he was virtually weeping with frustration about this.

The NHS are asking them to gatekeeper the services and tell people they can't have things. So we all need GPs with Attitude and a lot more grasp of internet-shopping than most of them have now.

[Karjade]

Thanks for your message. I have not had any flareups since stopping Flixonase - I am using Sterimar and sinus washes. However it is only two weeks so it is early days. I am also taking Seretide 250 for Asthma ( I am full of allergies!!) and I am going to see if I can reduce this to Seretide 100 - I am worried about all these steroids. According to the side effects of Xylatan one of them is Blephritis - this is what is stressing me out at the moment plus the dry eyes. I am doing everything I have been told to do but as yet it has not improved - I suppose it takes time. Reading your message you really know what you are talking about but this is still all new to me and I am relying on the hospital and GP (?) to help "cure" me. That is one of the reasons I am paying privately because I feel they are giving me individual attention. I am still learning about dry eye and Blephritis and trying different drops and eye cleansing. I just want to get better!!!

[littlemermaid]

Karjade, Very good news about not having eye flareups since stopping the nose steroid.

Just noticed that the independent pharmacies are loosening up on 'specials' and it's becoming more normal to get formulated prescription drugs either NHS or private http://www.moorfieldspharmaceuticals...al-case-1.html ie independent businesses not highstreet chain pharmacies. Maybe it's a case of finding an ophthalmologist who knows what they're doing with specially formulated preservative-free glaucoma drops - it's certainly worth asking her advice or speaking to Moorfields Private.

I really don't know what I'm talking about - we're all in the same boat here though

[Karjade]

This anterior blepharitis has got a lot worse since I have been on all the treatments for it. My eyes are so sore, burning, blurred and my eyes and under my eyes are all red and dry and sore. I am not getting on very well with this cleansing stuff as I feel I have an allergy to it all so I have had to just use boiled cooled water for a few days. My eyes do not seem to be so dry but it is everything else - I have been trying to find a UK helpline for Blepharitis but not yet found one. I have three things going on here Glaucoma, Dry Eye and now Blepharitis. I have an appointment with someone next Monday to try and teach me Cognitive Behavioral Techniques because I am suffering with anxiety attacks and not coping at all well. This has been the worst nine months of my life!

[abbygirl]

Hi karjade,
It has been awhile since I have posted. I have the the same 3 issues that you have. It will get better but it does take time and the Blepharitis does complicate things!! It took me a good 6 to 8 months to get my Bleph under control and I have not missed one single day of my "routine." Are you rinsing your eye well with a PF drop 15 minutes after instilling your Glaucoma meds?? After I do this, I use a heavier drop (like Optive) through-out the AM and that gets me going for a pretty good day pain wise. I also use cold compresses that I keep in my freezer made of rice in knee high pantyhose. Works great when I wake up with puffy lids.

I know this is tough...the Glaucoma is scarey and we will probably be on drops for the rest of our lives..but somehow you will find a way to cope. Do things that you love to do..walk, garden. hug your pet..whatever..try to tame that anxiety for it will do you no good..I know I have been there and BACK!!!

[littlemermaid]

Karjade, http://www.moorfields.nhs.uk/contactus This is the nearest to a helpline I've ever found.

If things are getting worse, back to the cornea docs to readjust the regime. Do you feel you have best-available docs? or need a second opinion? Is there something in the blepharitis regime making things worse? Inflammation from allergy to eyedrop products around the eyelids causes meibomian gland dysfunction, we've found, eg we can't use Blephasol.

Have they not suggested Abbygirl's suggestion of using oral Diamox for a while to reduce the eye pressure - wouldn't this work with this type of glaucoma? (I know nothing about this) Have you talked to Abbygirl by Personal Message to share more good ideas?

This http://www.patient.co.uk/health/Glau...pen-Angle).htm says preservative-free drops are available for open angle glaucoma.

Here's a helpline and support group that should know about glaucoma eyedrop complications - Sightline http://www.glaucoma-association.com/

Options for further/better advice could be Oxford Eye Clinic or Moorfields. Best not to call it blepharitis (they don't tend to take this seriously) - maybe describe it as 'worsening inflammation reaction to glaucoma eyedrops'. Or even better, 'my eyes are getting much worse - I have to use glaucoma drops, my docs don't know what to do'.

When I feel this way, I start doc-shopping for advice. Maybe not the best coping strategy, but looking back, all the advice is useful and it is empowering. They are all good at different things. We have a much better regime now with a few tweaks.