Preservative free eye drops

[CheshireResident]

I have had a glaucoma diagnosis for many years. Last December I had a preserflow shunt inserted. Unfortunately, I developed post-operative endophthalmitis 8 weeks after surgery. My sight has returned to a useful level but not as good as it was before. Unfortunately, the pressure in the operated eye has risen again as a result of the bleb becoming encysted. I am due to have a bleb needling procedure in 3-4 weeks time. In the meantime the hospital has asked my GP to takeover the prescribing of Dexafree eye drops which I have been taking in diminishing doses since the operation. Throughout this time the hospital has prescribed my Dexafree drops. The Consultants letters asks the GP to prescribe "Dexamethasone DEXAFREE 0.1% 0.4 ml unit dose eye drops preservative free". I have been on preservative free drops for over a year as my eyes were reacting to the preservatives. My GP wishes to prescribe Maxidex 0.1% eye drops in a bottle. I am concerned that these drops are neither unit dose nor preservative free. I have pushed back quite hard citing my need to retain maximum eye health in view of the upcoming needling procedure but have not succeeded in getting Dexafree or a generic single dose preservative free eye drop prescribed.

My drops run out on Monday. I do not feel I should have been put in this position as I am unable to judge if the preservative in Maxidex (benzalkonium chloride) is less of an irritant than the preservatives in Azargha and the other drops to which I reacted badly.

What do you think I should do? If this has not been resolved by Monday, should I take the Maxidex or contact the hospital?

[AlfredV]

I feel for you. As you point out, maxidex does have preservative and I can understand the preference for dexafree. Hopefully you get this sorted. Personally I'd use the maxidex to keep the inflammation down until you can get some dexafree, but ultimately only you can make the decision.

I was given a little tip from a consultant. He told me that even though dexafree are considered single use, I was advised you can re-use them. You can spin the bit around that you snap off and it works as a lid/top that you can push back on. The consultant did advise though to discard after a day. I was able to get several doses out of a single vial, which was helpful because at one point I was taking up to 16 doses per day! It also meant that I didn't deplete my stock of drops at anything like the rate I originally was.

[CheshireResident in reply to AlfredV]

Thanks AlfredV. I have also used single dose units a couple of times. Unfortunately the ones I'm using up are truly single dose (generic preservative free) and the end has to be torn off to get the solution out! So Monday definitely is my deadline.

[CindyKatherine]

I will suggest you contact the hospital. Thanks.

[CheshireResident in reply to CindyKatherine]

Thanks. I will if the Dr doesn't deliver on Monday.

[Hidden]

Maxidex has the same preservative as the other drops you were taking so is likely to cause the same problems for you. I would contact the hospital asp if your GP remains so obstructive....I guess its a question of cost.

[CheshireResident in reply to Hidden]

I was unsure about this but as you say they all have benzalkonium chloride in them which was causing me problems. I am OK with taking a generic to save money but they must be preservative free. My GP seems to have completely missed the fact that the Consultant has prescribed "preservtive free" drops.

[pigeonCl-HU]

I would say, contact the hospital, definitely. In my view it is shameful that you have to push-and be denied!- for something that has clearly been prescribed to you by your Consultant.

It is your Consultant that has the final word, not your GP.

So yes, CheshireResident, for your own wellbeing and peace of mind, please contact the hospital, and see what they say.

All the best, pigeon.

[mrswaffle]

Sorry if this sounds like a silly question, but have you actually spoken to a GP? Or was it the practice pharmacist or were you having messages passed back and forth via admin staff? I know it’s difficult to contact anyone at a surgery these days, so my heart goes out to you. What a difficult situation to be put in.

[CheshireResident in reply to mrswaffle]

Hi (not a silly question at all) I first spoke to Pharmacist who w as quite prepared to order in preservative free but needed GP to sign scrip and went to discuss it. I received a text from GP stating there was no difference between what I had been on and what they were proposing (ignoring the preservative free specification!) and asking me to send a photo of what I was using for confirmation. I sent the photo and an extract from the Maxidex patient leaflet stating that it contains preservative. GP replied "Don't worry the drops I prescribed are exactly the same.". I then made an online request making my case for preservative free drops and requested a phone call back from GP. No response by close of play on Friday. I feel very stressed by the situation but believe I am in the right. The last thing I want is to fight with my GP but feel I have no option. I suspect my relationship with my GP has been permenantly damaged even if I get the drops on Monday.

[mrswaffle in reply to CheshireResident]

At the end of 2019, beginning of 2020, Boots had great difficulty getting my Azarga drops so I saw a private GP and got a private prescription so I could get some from somewhere else. In the course of the consultation, this GP commented that “most GPs don’t really know much about eyes”. It would be much better if they could just acknowledge their limitations. Best of luck to you.

[Efabear]

Hello. Don't stop them suddenly whatever as this could be harmful. Like you I have a severe intolerance to a number of drops ( not just preservatives either) but interestingly I did tolerate Maxidex after surgery. Its a tough call but I'd give maxidex a try. I recently restarted some drops but reacted badly. However the eye I was using dexmethasone in had a much milder reaction. I assumed this was because of its anti inflammatory properties so you may well not react badly to maxidex like to do to other drops with preservative in. It's a cost issue for your gp I think. Equally there is no harm in speaking to your opthalmic team who are well placed to advise.

[CheshireResident in reply to Efabear]

Thanks for your supportive comments. I'm sure it's a cost issue but, if the Consultant thinks my condition requires preservative free drops, I don't feel I should accept drops with preservative in them without his confirmation that he has changed his mind. I am willing to use, and have used, generic preservative free drops to reduce the costs to the NHS. Another factor is that I haven't seen my GP since I had my preserflo shunt was fitted and they have never examined my eyes! I think they have made a serious mistake but I don't really want to get them inot trouble I just want the right drops!

[Efabear in reply to CheshireResident]

I understand completely. It's a tough condition to live with at the best of times and I agree you must fight your corner but it's a sad indication of a broken system that you have to. I had to do the same as I got lost to follow up and left untreated for several weeks despite me telling them I was worried it would happen. Your GP should accept you have the right to challenge them

[Efabear in reply to Efabear]

I'd also agree with the suggestion to contact your eye casualty service over the weekend if you have one

[Flowergirl24]

I would go to A & E at the eye hospital, get seen and they can prescribe them for you in the interim stage. Good luck.

[CheshireResident]

Update. Stressful day. Used last drop at Breakfast. Persuaded GP to prescribe DEXAFREE. Waited all day for delivery of drops. No sign by 1530 so contacted Hospital, Have now been waiting 1 hour for reply from Consultant's secretary. Time running out GP's dispensary shuts at 1830. Suspect hospital staff go home at 1700. Nerves shredded, Have phoned several local pharmacies but all say they would have to order the drops.

[Hidden in reply to CheshireResident]

What a mess. I feel for you. You must feel completely out of control of the situation. let us know the outcome.

[CheshireResident]

Further update. Drops did not arrive - due tomorrow. GP rang duty ophthalmology doctor at hospital. They advised no drops was lesser of two evils compared to taking drops containing preservative. Dr could issue a scrip but hospital pharmacy closed and general pharmacies unlikely to have them in stock. Hey Ho I now have to miss at least one drop through no fault of my own. Just have to hope endophthalmitis does not return.

[autumnlass]

Let’s hope they arrive for you tomorrow. 🍀🤞🏼

[CheshireResident]

Further update: Got the drops from the hospital this morning and was able to put one in at 1055 (so I have only missed one dose). Drops picked up 15 days worth of Dexafree drops from GP. Learning points are beginning to form in my head. 1) Lie about when your medication will actually run out.

2) Plan for worst case not best case ie. seek hospital's help before GP has actually failed to meet deadline.

3) Stand your ground if you are being given wrong information,

Other views welcome.

[Hidden in reply to CheshireResident]

Learning points for your GP too. Hopefully he/she has learnt something important about eye drops.I always underestimate when my meds will run out, terrified of being without.

Recently the hospital sent me home with enough drops for 4 days on a Friday afternoon with a letter to GP to continue the prescription. I had to rush to the GP practice before it closed, present the letter and say they were running out by Monday. It worked, but even then I was stressed about it.