A bit annoyed today!

Hi all, had my review today 5 weeks after inj 19. Oedema back again, not a surprise as knew vision had changed again. At last review consultant said we would switch to eylea once nice approved it for brvo (which they did Sept 2016).

So, imagine my shock when Dr today tells me I need a steroid implant! When I asked what about trying eylea she told me regretfully it wasn't approved!

I had to tell her it was......a bit of an uncomfortable moment before she muttered that she seemed to be a bit behind the latest info. Anyway we agreed to try eylea so now I wait for the appt.

This Dr is the one I had to make a formal complaint about 2 years ago. I cannot trust her and have again had to speak to the clinic to ensure she does not review me again.

Was v annoyed when clinic used the phrase "I highly doubt it" after I told them what she had said to me. Apparently she is in charge of the eylea clinics!!! I told them if they were calling me a liar I would cease the conversation immediately to which they apologised and agreed to my request.

So much for trying to reduce stress ha ha.

Had a good sleep this afternoon so feeling better now but what a palaver.

[sal2]

Good morning eyesright. So sorry to hear about your recent review, you don't need the extra anxiety this can give you. I hope you don't have to wait too long for your appointment. Best wishes to you for 2017, hope all goes well. Take care.xx

[smiler6044]

Hello Eyesright, sorry to hear this. It is so unfair that practice differs across the services, with Eylea being used so widely and for so long by some Clinics but not others. It is incredibly hard to deal with any deterioration in your vision and then to have to battle alone just to try to get the facts straight to even understand treatment options. Lack of competence, knowledge, are their funding issues - they are at the back of your mind at every appointment. We are so reliant on the knowledge of "the experts" to provide advice, support and above all the correct clinical practice to maximise our health potential.

You are a very brave lady in these very worrying times and we are so sorry you have a key person involved with your treatment who you feel you just cannot rely on. We hope the Eylea Injection starts to bring a long term improvement for your condition. Mr S had his last Eylea Injection around a year ago now, although during all of this time with reviews, it has been a very slow path towards watching the bleed finally slow and then stop. We now wait to see if a bleed reappears again and yes sadly, you do know this yourself ahead of going to clinic.

Sending you support from the both of us but particularly from Mr S as a fellow BRVO sufferer. You are part of an army of patients who have so much knowledge, they should be capturing this or you could write a book!

Take care and sending a much needed hug.

Kind Regards

Mr & Mrs Smiler x

[Hidden in reply to smiler6044]

Thanks so much x

[Macular_1]

Hello Eyesright,

Our Macular Oedema factsheet explains a bit more about suggested treatments;

macularsociety.org/sites/de...

Ozurdex and Iluvian and approved steroid implants and can be very successful.

'Eylea® (medical name aflibercept) has been approved for the treatment of macular oedema caused by diabetes (DMO) and visual impairment due to macular oedema secondary to branch retinal vein occlusion (BRVO)'.

I hope this is of some help.

Best wishes

Helpline

Macular Society

[tallyho]

Hi there firstly wow how stressful that was !! And secondly well done for knowing your stuff about NICE guidance and recommendations it makes such a difference in some circumstances when DRs are not up to date. Eylea is a sensible option as it is another anti veg f whereas steroids are different. I myself am a 'steroid responder' so can't have them myself. Are u under a consultant do u ever get to see them? I rarely do but PALS were brilliant at getting me an appointment with mine and then at that appointment was able to be registered as partially sighted. Sometimes I call my consultants sec who recalls my notes and my consultant has a look at them ( without seeing me) just to make sure the best decisions are being made especially when I have a complicated issue. Hope all goes well with you and Eylea. I think my hospital are trying me on 6 weeks without injection. Not done that for over 5 years. 8 weeks def did not work for me.

[Hidden in reply to tallyho]

Hi, yes see different consultants every few months. This time she was covering for one of them so I wasn't actually meant to be seen by her I found out later.

She had just finished telling me stress makes all illnesses worse ! Honestly I was dumbfounded she wasn't up to date (although it's pretty much endemic in my hospital, I wouldn't want to be an in patient).

I am hoping for the best with eylea but preparing for the worst. Don't know how many they will let me have. Got lots of Qs for next review ha ha.

Best of luck to you x

[tallyho in reply to Hidden]

Hi again basically generally you are under ONE consultant who has a team of people working under them. Generally you don't see the consultant but instead one of their team who are qualified ophthalmologists. These are the ones you would see every month so are not consultants but Drs. So I would find out who is your consultant and ask them to review your case. Hope that makes sense.

[Hidden in reply to tallyho]

Unfortunately my clinic doesn't work like that. I have seen 4 different consultants, I know because I work at my hospital. Maybe they are passing my case around because it's been a bit unusual. I will ask at next review who is top dog ha ha.

[Hidden]

It beats me how practitioners of this ilk remain in post. Whatever happened to CPD vital to anyone in such a position but all too many remain aloof. It just confirms that we need to push for our own preferred treatments and not be dictated to.

[Hidden in reply to Hidden]

I know. When the staff nurse was singing her praises I was shaking my head in disbelief. Good job it was over the phone. I find they don't actually listen to the complaint you are making, kept saying she was well liked by everyone - I had to say I wasn't saying against her as a person, just the incorrect info she was giving out!

It would have been nice too if she had read my notes and seen the agreed treatment plan for eyelea.

Hey ho. I used to be shy, not anymore ha ha !

[Hidden in reply to Hidden]

If you Google Eyelea or get further "advice" you may be told that there is a very high risk of glaucoma. I was told that some 6yrs ago and it was the general honestly held view at the time. However, recent research has shown that the glaucoma risks appeared to have been significantly overestimated and were in actual fact very low. A case of over-cautious attitudes whilst a drug was in the early stages of its use. Better safe than sorry I suppose.

I opted not to have Eyelea for my condition 6yrs ago solely due to the risk, my reasoning being, why would I want to inflict another condition on myself not even knowing if the Eylea would work and so continued with Avastin and later Lucentis.

[Hidden in reply to Hidden]

Yes, thanks, I already have drops for raised IOP which can lead to glaucoma (a side effect of the Lucentis). Will have frank discussion at next review.

To be honest I'm on week 6 now without treatment so deteriorating noticeably and will take whatever I can get if it means I can continue to be able to read!

Here's to a good 2017 for all of us x

[Hidden in reply to Hidden]

Purely as a matter of interest, are your drops for glaucoma Apraclonidine?

HNY to you too.

[Hidden in reply to Hidden]

Not got glaucoma yet just raised IOP. Drops are blood pressure lowering ones Timolol (which I also take by pill for tortuous arteries).

[Hidden in reply to Hidden]

Thanks. I asked about Apraclonidine because it appears that it helps prevent discomfort both during and post eye injections.

[Ayayay80]

Hi eyesright. Glad you are feeling a bit better now. I know the feeling, having had to make my point in the past myself, though in my case it was the technical staff rather than the consultant. They seem to think we are trying to be clever. But we are not; we just want them to be honest and open with us. However, we are very fortunate really in our modern times, being able to gather reliable information on the various web sites so that we can understand our conditions better and keep track with what is happening and also fortunate that treatment is available even it it seems a long haul. Still, we should not have to do battle with the people who are supposed to help us. Keep smiling. Hope the eylea will work for you. Keep us posted.

All the best x

[Hidden in reply to Ayayay80]

Thanks , yes you have it right exactly x

[Beldie]

Hello eyesright: What a way to start the new year; so sorry about that difficult doctor. Even I knew about Eyelea being approved. I think you're brave to tackle her - one does wonder about that sort of thing in light of their power over us.

I go for a review in a few days and have been rehearsing somewhat shakily whether I should mention the last injection, which was so painful that I shrieked out loud and I think surprised the nurse practitioner. As she was putting in the clamp to keep my lids apart I felt it unusually uncomfortable and tried telling her, but she wouldn't stop the procedure (maybe because she'd have to start all over again - I don't know).

Why is it that most professional sites about wet ARMD tell us the injections are usually pain-free? Not one of mine has ever been, but that last one was something else.

BTW, have you ever considered making a top-level complaint about her? (A daunting thought...)

Anyway, an afternoon sleep is a Good Thing! XX

[Hidden in reply to Beldie]

Thanks Beldie. I did make a formal complaint about her 2 yrs ago but was giving her the benefit of the doubt this time! She was much better re compassion etc just completely wrong on the key info. Ah well hopefully now she knows the next pt will get the right treatment plan.

My last inj was more painful, like you it started immediately and they told me they used a different anaesthetic

[Hidden in reply to Hidden]

Maybe your clinic used something different too? Worth asking . Mine said they couldn't get hold of the usualso it might be a nationwide shortage.

Best of luck x

[JJnan]

good for you making your point ....thought it was just me but since being on here i know different ...i have no faith in the drs in my clinic ...i to picked up courage to make a complaint ...will know fri when meeting is ......does make you wonder about consultants to ..(mine told me no difference in lucentis and eylea ) .....i hope it works out well for you ...keep us updated ...good luck xx

[Hidden in reply to JJnan]

Thanks jnan, same to you. Good luck with your meeting too x