I just wrote loads and it disappeared, when so writing again in less detail!
I was recently diagnosed with MMD in June. In July, my scan revealed new blood vessels had formed, and I was given my very first injection of Eyelea as a 'just in case' precaution. My vision has improved since - no wavy lines or distortion, perhaps even sharper focus and just a clearish scotoma.
I got a phone call earlier inviting me for a second injection on Monday as someone had cancelled. It has been almost a month. However, I thought I would be having a review including scans etc., to see how the first injection went and how well or not my eye is doing.
Is this normal procedure? I also wanted to talk about my good eye which had been somewhat strained and slightly bloodshot since injection number one.
Am I worrying too much? Do I just get on with it and be glad I have the opportunity for a second injection (& a timely one at that if, the intention was to have more than the precautionary one afterall).
I'm keen for an update on my eye situation. What is a miracle has occurred and I don't need treatment for another ten years!😂
Okay, highly unlikely. But then again I am all new to this and very anxious to ask and be asked questions at each review.
Grateful for any advice, and/or cake.
BGS
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Bluegreensea
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I would ring the consultants secretary and ask about the injection.
I have always thought that you had a loading dose of injections. I had 5 and now my injections are 8 weeks apart.
It is difficult to know how things are for you as at my injection appointments I have a visual acuity test, a scan, see an opthamologist for a review and then the injection.
I get eyelea injections and usually every 30 days get pictures but during Coronavirus they have passed on that they can do pictures and still give injections same day good luck
Hi Bluegreensea. Like you, I had almost finished typing a reply to you and it just disappeared. This seems to happen a lot on these Healthunlocked forums for some strange reason. Anyhow, I am like Koalajane, I have the visual acuity test, the OCT scan and then see the opthalmologist before the injection, although that wasn't happening in my area between March and late July (because of Covid), it was just the injection and nothing else. You could ring the appointments number and ask them or as Koalajane suggests, you could ring the consultant's secretary and ask her. If they don't scan your eyes, they won't know how the last injection went. Good luck. xx
Thank you for replying (& taking the trouble to do so twice! 😀).
This is all very helpful to me, and I think your experience, along with koalajane's, has helped me decide to ring the hospital early Monday morning to ensure I get my eyes checked before the next injection.
I’m on Lucentis injections but I had my first one after seeing a dr and not seen one since! Just keep getting injections every 4 weeks. I see the dr next time as was told following loading dose they would be further apart. Did have pics took the time before last but not last time. I queried it as thought they’d be less frequent as do hate having them. So crossing fingers they’ll be less frequent x
I've heard the same consultant I had last time is administering my injection, which is a comfort - he was so gentle last time as my nerves were obvious!
Just to preface with the usual everyone is different...... I had/ have uveitis which lead to MD in my left eye I was told it wasn’t age related. I had the initial 3 loading injections 5 weeks apart which I think is standard practice then had follow up checks with no treatment. Four months later I had 1 more injection that was Nov 2015. I have twice since been told I need another injection which was during a uveitis flare up, in the time between checkup and injection appointment the problem has resolved itself, big relief. It may well be that they want to do 3 loading injections but be optimistic you may well not need anymore injections but you will need to stay vigilant. I remember my first visit to the eye clinic and seeing these huge thick files that accompanied patients I now have a huge thick file myself. Good luck.
I was told by my very good eye hospital that due to the virus situation, to always be prepared to have an injection on all appointments made, it seems to be the way some hospitals are operating at present. It has happened to me that I thought I was going for a review and when I got there they said I was having an injection. I have every faith in them, and the injections have certainly helped.
As you've seen, clinics are different. At mine you get the consult, tests, review of progress at one appt, then separate appt usually different day for inj.
The loading dose of 3 inj each spaced a month apart is standard.
After the initial diagnosis appt in my clinic we don't see doc until after the 3 loading dose inj. That review checks if you need more or not and further inj are interspersed with reviews which include visual acuity/oct tests.
The aim is always to go longer between inj but it's good to check yourself using the Amsler grid - if they didnt give you one you can download with instructions off the Web. I usually mark mine with pencil to make it easier to recognise any changes. Once a week is often enough to use it. After the loading dose if you notice deterioration always ring your clinic for advice.
Good luck going forwards.
I don't know if you're aware of the "Helpful Stuff" topics on here? Some good stuff in them for both "newbies" and us more seasoned folk
They're a bit clunky to find, let me know if you need directions.
Hi things are different at the moment because of Covid 19. I have had 52 injections the more recent ones being Eyelea. My last two visits have been for injection only and all the pre injection tests haven’t been done. Don’t worry the clinics know what they are doing. Take care.
I have myopic MD and in the USA. Here an OCT is done every visit and injection only of fluid or a bleed is present. One of my eyes had a small bleed 3 years ago and only requires k e Lucentis injection. I now get that eye cmexamined and scanned every 6 months.
I don't know enough about myopic MD yet - I am also under the impression that injections are less frequent than wet AMD. My MMD eye looked like it might bleed which is why I had the (my only to date) injection.
My appointment is at 10am tomorrow, but I'll be phoning at 8am to try and talk to someone.
Hello - I've been having Lucentis injections for approx. 3 years starting with the 3 loading doses every 4 weeks. Since then, time gaps between injections have been adjusted according to results, I'm now on a program of injection every 8 weeks which the ophthalmologist at the NHS eye clinic agrees is right for me. Since start of the pandemic I've had two injections & my next one is at beginning of September. Everything at the clinic is well organised to work within the Covid guidelines & my usual routine is eye test, scan, review, injection. All the staff at the Clinic are very professional and caring. I was very nervous at the outset of my treatment 3 years ago but sometimes fear of the unknown can be the problem, Hope this helps. Good luck for the future. Kind regards.
3 loading injections one month apart , becoming more spaced as time goes and you react to the treatment. Like you I reacted very well to the treatment and after 3 o r 4 years am every 12 weeks. Unfortunately my other eye has gone from dry to wet AMD so have injections both eyes. Eye unit not using scans if possible. last scan, despite not having injection for 17 weeks ( as I had a mini stroke before last appointment) showed one eye not so good but one was near perfect. Only met one man who has yearly checks and injections not needed . . Most of us have to go long term for treatment but better than having serious visual impairment!
I'm sorry to hear about your mini-stroke, that must have been extremely stressful especially under Lockdown.
Eye clinics do seem to be operating differently.
I didn't sleep well at all last night, despite wishing for it! I must have been more worried about the possibility of no check-up today than I thought.
Really pleased for you and a bit envious. That was a really good outcome for you. I find the differences in treatment and experience of the eye treatments quite amazing. Am still confused as to what I should be expecting. I have had two loading doses of four Which have been approx 6 weeks between them. My eyes are much worse than my initial diagnosis according to a private scan At the opticians today. I have not had an injection since may and no appt till 30 Oct. don’t know which area you are in but sounds as though it is a good service compared to here. This is a good place to get information and support. all the best bluegreensea. Great name by the way.
I'm so sorry that you are struggling to get regular appointments - that's really tough, and unsettling for you I should think.
I'm in Yorkshire, and yes, the eye clinic at the hospital has been great. My own optician missed all the signs at my last appointment over Easter, and it was only by visiting the emergency optician in another town during the beginning of Lockdown, when I was experiencing wavy lines, that my condition was spotted.
It's still early days for me, I'm 53 and worry how long my vision will be of good quality. I discovered my uncle was diagnosed ten years ago (he's 84 now and we aren't really in touch) and he apparently doesn't have much sight left at all ... but somehow plays golf, which is great!
Who knows what the future will bring? You and I, and many here could be blessed with revolutionary treatment - perhaps even a cure in the near future.
October seems a long way off however. I wonder if you could demand to be seen sooner? Kick up a fuss.
Also phone the Macular Society.
Good luck, and let me know how you get on.
BGS xx
(bluegreensea - the colour chosen by someone to describe my eyes when I was a youth, at a time when the world was my oyster, and I took my health for granted. blueredsea would be more apt today!)
Have just phoned the secretary at the eye clinic who will contact the consultant. Am amazed to see that many patients seem to know the plan for their treatment. I had no idea what to expect and don’t seem to get much information. It seems to be assumed that I know. I am originally from Cumbria but have lived in Scotland a long time and was in my seventies when diagnosed so more fortunate thAn you. There seems to be a great variety of responses to treatment but, being younger, your response will hopefully be good. It takes a while to adjust to the diagnosis and treatment is still a roller coaster of emotions for me. You don’t sound as though you are pAst your sell by date yet Anyway. Still bluegreensea inside. Bugger the red! All the best. Chin up.
Fingers crossed that thd consultant gets back to you.
To be honest, I don't even know what my condition is. One consultant said Myopic CNV, another Myopic MD. No idea what the differences are! I just know I need to take extra care of my health - always a good move.
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