worried

[sylvester1]

Hello. Just found this hub. I was diagnosed with Glaucoma a few months ago. What is stressing me out (I just cannot sleep for worry) is I cannot get the single dose eye drops that were prescribed, and have difficulty with the tiny bottle given as a substitute and must be using too much. The bottle only lasted two weeks and I cannot have any more until April 6th. Is it okay to miss two weeks? I can't get anywhere with GP or Pharmacy. Nobody seems to care. Thanks very much for any advice.

[NewCardinal]

Hello - try not to worry. But you shouldn't be having to miss dosing as it could affect your eye pressures. Depends how high your pressures are and whether you have lost any vision yet as to what the effect would be. Recommend you go back to your GP and pester for single dose ones and explain why you've run out. I put in way too much with the bottle. I suggest you phone the Glaucoma UK helpline as they can help you find one of the special little bottle holders which enable you to put in just one drop at a time . Hope this helps.

[sylvester1 in reply to NewCardinal]

Thankyou so much for your reply. I cannot get to speak to my GP for at least a week to ten days. It is so bad at my surgery, but online they tell me no more eye drops until April 6th. It is so difficult when you can't actually speak to anyone. I am an 80 year old lady and it all becomes too difficult, but I will try my luck at the eye clinic. Last time I tried for five days but the phone line wasn't 'open'. Thanks again.

[GirlWithTheBow in reply to sylvester1]

online as in your surgery’s app? I found i can put in another request before the stated time

[Beecalmed in reply to GirlWithTheBow]

My GP app won’t let you order unless the date for issue is changed by the gp. I had to contact my gp by writing to them. ☹️

[GirlWithTheBow in reply to Beecalmed]

hmm, i normally just submit a new request and it works that way. I found it annoying that they don’t realise eye drops only last 4 weeks after opening and won’t allow you to order until next date quoted on the app

[Beecalmed in reply to GirlWithTheBow]

Yes it’s a daft system when you really can’t go without the drops. My GP has allowed me to build in a buffer now, so that’s much more reassuring. 🙂

[swanlady123 in reply to sylvester1]

I really feel for you -Ive just started on Monopost & had difficulty getting second prescription- have to see hospital again in May to decide whether continue drops or have slt laser. I too worry as noone gives straight answer & like noone really cares these days. it is scary with eyes . I really feel for you .Trying to get hold of anyone these days is dreadful -we are on our own. Hope all works out for you - really do.

[sylvester1 in reply to swanlady123]

Thankyou so much for your reply. It's good to know I'm not alone. It's so depressing. I'm also having trouble getting other meds too. As you say, with eyes it is more of a problem. I've been on the phone most of the morning, and now I have been given a code number to try other Pharmacies. I have found all of the replies and information from the kind people on this site very helpful.

[swanlady123 in reply to sylvester1]

Yes I am also new to this site and people are so kind & genuine. It's an uphill struggle these days & as we get older we really don't need it!! Hope you get sorted -Good luck- my thoughts are with you cos I am a real worrier also. Cheers,

[Trish_GlaucomaUK Partner]

Hello Sylvester1,

You do not mention what eye drop it is. If it is Monopost, there were production problems. This has now been rectified and wholesalers will be delivering to pharmacies this week.

The best thing to do is to speak to the eye secretary regarding a replacement. It is pointless speaking to the GP about an alternative as they cannot authorise a change in your prescription.

Any concerns regarding your eye drops always get back to the eye secretary, as they can tell the consultant and get back to you.

[sylvester1 in reply to Trish_GlaucomaUK]

Many thanks for the information. I really appreciate all the kind and helpful replies from people here. It's good to know I'm not alone and I'm taking all the advice and suggestions on board.

[Susiepamela]

Hi don't worry, it comes with practice. I struggled so much putting eye drops in and now can do it virtually anywhere and I have never had the single use ones. It will get easier 👍I wouldn't miss 2 wks however as I have always been advised that we shouldn't miss any.

Good Luck ♥️

[sylvester1 in reply to Susiepamela]

Thankyou so much for reply. I have had lots of useful tips and advice from people here. I appreciate it and will keep phoning surgery and Pharmacy armed with more information.

[VerdiG]

I find the little bottles of drops only last me 3 weeks not the 4 that they are supposed to. It’s hard to know sometimes if a drop went in. So like you I probably use too much. I can request my repeat prescriptions earlier and so far have managed to get away with that. The other thing I do is order some privately online so I have a back up supply. You will need a copy of prescription or letter from eye hospital to GP for this. But all good advice above. Sounds like you will need to persist with ringing the Secretary of your consultant to get prescription changed. Meanwhile GP should be able to issue another prescription, if you can get through to your surgery.

[sylvester1 in reply to VerdiG]

Thankyou so much for advice and very useful information. I'm encouraged by all the kindness of people on this site. Lots of things I can try.

[Campy]

I keep eye drops in fridge. It's then easier to know if you have put in an eye drop as it feels cold

[sylvester1 in reply to Campy]

Thanks very much for useful tip.

[Littletreasures]

I also had a problem with getting my prescription as the GP said I couldn’t order more than once a month but a bottle only lasts me around 3 weeks. I did go for a couple of days without drops whilst I tried to put together my reasoning for needing a prescription more frequently than once a month. I rang the doctors ( it’s just an answer machine) and I explained that a bottle contained 100 drops and that I have to take 4 drops a day which means that if I get every drop in without missing my eye then a bottle will last 25 days. They seemed to accept this and when I ring now for my repeat prescription they allow me it every 23 days but I do worry that if there is a slip up in the system ( like sometimes I pick up my prescription and it’s incorrect) that I will have to go without again whilst I wait for it to be sorted as I have no back up bottle. Can you go into the surgery and explain the issue to the receptionist and ask for a note to be put on your records which explains that you need your prescription more frequently than monthly? Or do you have a relative who could go in on your behalf?

[sylvester1 in reply to Littletreasures]

Thank you so much for your reply with lots of advice. I appreciate it very much. I have a lot to think about now and things to try. I feel better after having so many people offering help and supportive comments.

[Safehaven23]

I find I need to put my head well back and pull my bottom lid away a little then hold the bottle inverted over my eye and a slight squeeze sends one drop out. It needs to last at least the month and so try and practise the drop over the sink first - to get it going. It needs to be applied nightly and regularly and you should speak to the Doctor if you find this too difficult to manage.

[sylvester1 in reply to Safehaven23]

Many thanks for taking the trouble to reply. I appreciate it. Lots of tips and advice from all the kind people here.

[pinks223 in reply to Safehaven23]

me too have difficulty getting drops in I do same method as u it’s hard to know if it goes in or out only know when it stings then it’s in

[dillydream]

Hello, I’m also newly diagnosed, with normal pressure glaucoma. No follow up from hospital as promised. Got hold of consultants secretary in the end as no letter sent to GP. Now having problems getting more single dose Monoprost but have seen on a pharmacists website that it’s on the way. I use a magnifying mirror for makeup and have found that helpful for drops. Need to squint a bit though!

I’ve been reading about trials of a form of vitamin B3. Anyone got any news about this? Important that I keep my sight as long as possible as I support a daughter registered blind from a totally different and unconnected cause. So I’m keen to do as much as I can.

[sylvester1 in reply to dillydream]

Many thanks for reply. It's been quite an eye-opener (no pun intended!) to read of all the problems other people have encountered. I have gained so much information from the kind people on here. Good luck with the issues you have. Very interesting about the vitamin B3 trials.

[Moana64]

Hi, it takes a while to get into the routine of taking your drops, however I have in the bottle and always seem to put on more than needed, but just have a tissue handy.

This will get better, as you get used to this. As I understand you can’t miss your daily dose for any reason, so I would keep trying to get thru to your eye doctor.

Can you not get 3 months of the drops at one time?

Good luck

[Beecalmed]

Hi Sylvester1

Can I ask do you put drops in both eyes and how many times a day do you need to dose from that one bottle?

I ask as I once wasn’t given enough drops for the prescribed doses from my consultant. Like you I was running out about a week before I could get a new bottle but like you my GP online app wouldn’t issue until the date had passed and was set at 28 days. I worked out that my consultant had upped my drops to both eyes twice a day and the bottle didn’t have enough drops in it to cover it. I actually needed 2 bottles. I asked the gp pharmacy to check dosage and they agreed and changed my prescription to two bottles.

I have also had an issue with my eye drops not being available. The online app set at 28 days left me and the pharmacy no room to find another drop if there was an issue so my dr has set me a shorter supply date so we can get the drops early but if there’s a supply issue we have a 2 week buffer to find an alternative.

All this happened in lockdown so I had to write email and badger my surgery but my consultant’s secretary was really helpful in this too.

So first check that your prescription dosage is adequate for what your consultant has prescribed. If it is and you are still running out then ask for help in checking your administration of the drops. You need to tell the surgery that your condition means you must not miss your drops, so until the problem is resolved they need to issue you extra bottles or individual doses. The individual phials are more expensive so that’s often why the gp changes to drops in a bottle instead. If you are happy emailing them email but if not write. Meanwhile contact your consultants secretary and explain the problem. They want you to take your drops, so they should help you or put you in to someone who can.

Let us know how you get on. 🙂

[sylvester1 in reply to Beecalmed]

Gosh, thank you so much for taking the rouble to explain all that to me. Before I found this site I feel I had nobody to talk to really about my worries. I live in a sheltered accommodation block and everyone here has their own complex health issues to worry about. People on here have given me such good advice and tips I can try. I really appreciate it. Today I will continue the 'battle', now armed with lots more information. Thanks again.

[sylvester1 in reply to Beecalmed]

Just one drop a day in each eye. On the bottle it says there are 80 drops in that tiny bottle and I know it should be enough, but sometimes I miss my eye or put too much in as I'm not used to putting the drops in. Someone suggested a dispenser bottle that only allows one drop at a time to come out? Does anyone know where I could get one of these? Many thanks.

[Beecalmed in reply to sylvester1]

Well that’s good, it sounds like you have the right amount of drops in your bottle so it looks like you might benefit from some assistance in applying the drops. I would think there might be a nurse at the hospital or your GP surgery who could help you master this or direct you to drop aids that might help you.

Glaucoma Uk and RNIB websites have applicators for sale in their shop. You do need to ensure you get an applicator for the right type of bottle you are using as there appear to be different types depending as to whether you have preservative free drops or standard drops or the individual phials.

Sadly, I don’t have any experience of using an applicator but hopefully someone on here will come along shortly who does. 🤞🏻

[sylvester1 in reply to Beecalmed]

I'm feeling more confident, just by reading these kind replies from people. Such a help. I have a little notebook and I'm writing everything down. Thank you so much.