Hi all, had review today. Bad news. They now want to give me a steroid implant (say inj no longer working for my brvo).
Came home and cried.
Don't know why but the idea freaks me out. I've agreed to it as it seems it's my last option.
Anyone had it done??
Hello Eyesright, I'm so sorry to hear the injections aren't working for you now. I think that, although none of us would choose to have these injections, you get into a routine and the thought of changing treatment can be very frightening. I haven't had steroid treatment and, in fact, had Lucentis injections, one last Tuesday and one yesterday, so I'm feeling a little bruised and sore this morning. Just talking to people who've had to switch to Eylea because their Lucentis has stopped working fills me with dread for the future yet basically the treatments are both the same.
I have read up on steroid treatment and it sounds to me as if there are pros and cons as there are in all treatments. The best thing is, I think, the long lasting effect.
Have a good cry Eyesright and let all of those negative feelings out and I hope after a while you will feel stronger and able to face this next battle. We're all here for you. Sending my love and a big hug x
Thanks kalahuchi, i appreciate your support x
Best of luck to you going forward, hope youre a bit less sore now x
Hello Eyesright,
So sorry to hear your news.
If you haven't seen our factsheet about retinal vein occlusion (which includes information on steroid treatments) please either call our helpline 0300 30 30 111 (9.00am to 5.00pm Monday to Friday) or email a request to; help@macularsociety.org
Best wishes
Macular Society
Sorry to hear this Eyesright- is this because your sight hasn't recovered enough to have a break and then re-start injections? It seems good that steroids are given less frequently and both the cataract risk and increased pressure risks are both treatable. Do let us know how you get on- you may feel better about this after the first one is done
Hi rosyg, they say it's because the effect of the inj isn't lasting long enough. They gave me 4 eyelea but 7weeks after the last one vision was going blurry again and by 8 week review its as bad as at the beginning again (same happened with the 19 Lucentis I had).
I hope they want me to have the implant because they think it will work better but I can't help thinking there's a cost saving motive too. I did ask how come people with wetmd get lots more inj than I had and continue to have them. Dr said because steroid implant won't work for wetmd.
I think I'm just a bit too stressed to think straight. Had 3 deaths in the last week, not close friends but it's still been shocking.
With my eye it just feels like I'm one step closer to the precipice and nowhere to back up to!
I know I'll feel ok in a day or so, just got to let this wash over me for now. Thanks for caring x
There is a short term that lasts @3 months and the one I'm getting next which lasts @3 yrs
Hi, there's someone else on here who had a long term implant. You might want to post separately asking how they got on with it?
it's hard to compare as I haven't had the Lucentis but the doctor I spoke to last Friday , before my 5th Eyelea injection, said that they will continue until there is no further improvement and then monitor and give injections when needed. I had been moved to six weekly but after one six weekly injection was moved back to 4 weekly as more oedema had built up (bvro like you). I wonder if they feel monthly injections are too frequent for you- I think you had had some pressure problems??? Just speculating here. It's worth a bit more quizzing about the reasoning but I hope it's because they think the steroid is a good option. I think the effect of the steroids allows the pressure from the artery pressing on the vein to be reduced and then healing can occur so it's a different effect but may be mis- remembering this!!
Thanks rosyg. They do keep saying the implant means no more monthly inj but the implant can cause pressure rise too.
I think I will go ahead with it but if it doesn't work I will ask for a second opinion (the consultant basically said they would give me two then if no improvement would just have to live with it then he quickly said we're not there yet).
If it keeps my sight, even for just a few weeks at a time, I would continue inj but they don't seem to be offering that.
Well, will see at next review .
Best of luck to you x
Hi there I have not had a steroid implant BUT I know about them due my meetings with various professionals at conferences etc. The steroid implants are very safe if your IOP ( eye pressure is always good) . There are 2 main steroid implants they do the same thing the main difference is one of them completely dissolves including the capsule and the other the capsule does not dissolve both are equally as good I would be tempted to ask which they are using. You will need to have your IOP checked at every visit ( you may already ) . I know someone who has had the implant and is very happy with the results. I am a steroid responder so can't have them as you will know the implant releases the steroid slowly so there will be no more injections for a while ( 3 months I think) Take care its good the drs have another plan for you and trying something else.
Thanks tallyho, I will ask about the dissolviing.
PS at the conference at the RSM I saw the implant it is very very tiny even in relation to your eye. It should not feel any different than am injection really.
Hi there just to confirm the question is not about the drug basically they are the same but some are in a biodegradable capsule that dissolves and some are not that's the only difference sorry for the confusion
Hi yes I got that thnx . I definitely want one that dissolves completely! What the hell happens if you have more than one capsule left in your eye?! Dr told me you can see it sometimes - would drive me crazy lol .
Dear eyesright. I am truly sad that you're going through this. I have no experience of it so can't give any advice. But I think I've come to know you a bit through your replies to others on Health Unlocked and you always, always give encouragement in a positive way and I know you've helped others; certainly you've helped me in the past. I know that no-one said life would be fair, but...
I'm still on monthly pokes in the eye (the second one) and now I find the beginnings of diabetic retinopathy showing...so I started a low-carb diet to control blood sugar and put off the evil day; I'm finding the search for the 'correct' food quite intriguing. Takes the mind off the eyes...I hope you can find something to focus on for some relief in your current situation.
Thinking of you.
Ah, thanks Beldie, x I have a friend who was t2diabetic and with iron will she changed her diet and is no longer deemed at risk. It is tricky the low fat stuff is usually high sugar(carb). Good luck x
Many Diabetes II now use a low-carb diet which eschews low fat products, but focuses on protein, fat and vegetables, combined with testing, for guidance as to what works. The bonus, which I'm still waiting for (!), is loss of weight. Forums online give great help.
Keep smiling.
I have had a steroid pellet, Ozurdex, offered twice to combat cystoid macular oedema. Not the same as wet AMD but it generally responds to the same treatment. Initially, and after researching it I opted not to have it. Since then I have seen research which indicates that the fear of glaucoma had been over exaggerated. It can still happen but in only a v small percentage of cases. It is usually treatable. A cataract is virtually inevitable but again is very treatable.
Today I was anticipating being transferred from monthly Lucentis shots to Ozurdex but happily, my improved vision and reduced swelling confounded the predictions and I had my 70th Lucentis/Avastin poke in the instead.
The benefit of Ozurdex is the lengthened period of effectiveness. Usually 3 months.
Thanks Rennatk. I can't seem to get past 7 weeks with inj. They didn't offer me more inj. I'm willing to try the implant but if it doesn't give as good a result as inj I will fight to go back to inj.
Getting ahead of myself though - implant may be good for me!
Occupational health sent me home from work today so I can focus on de-stressing.
Great news on your improvement x
It is a difficult one but there is no doubt that the implant can work well for some. The trouble is that we never know until we try it!
I hope all goes well.
Hi Eyesright, So sorry to hear that the injections are no longer working. I know nothing about the steroid implant treatment. You have been so supporting of everyone - time to give yourself a big hug. I am sure that we all look forward to hearing you say, best thing I could have done. Take care of yourself and wishing you all the best. xxx
Ah thanks Bobbie, I've had a good day today painting the garden fence of my brain damaged brother-in-law. Perspective is everything.
I'm over the blip I think. Got a grip of it now lol.
Do want to get the next bit over soon though. Will let y'all know how it goes!
Hi eyesright
So sorry to hear of your ongoing problems. I seems that it never rains but pours for you. I do hope that all goes well with the implant and that you keep your spirits up. Apart from that, all you can do is to follow the advice of your medical team. I wish you the very, very best. Sending you a big hug. xxx
Thanks x I've learnt to dance in the rain lol.
Had to chase clinic for appt today as one of the two weeks gone already. They offered me the 11th with the Dr I don't like or the 28th with someone else. As eye deteriorating daily have gone with 11th which will be 10weeks after last inj. Really dont think would make it to the end of the month and it would be that much more oedema to recover from. Fingers crossed she does a good job!
Hi I have had the short term injection ozurdex.com
For 2 months and I went for my scans just this past Wednesday and my eyesight had improved by 60 percent and on my scans 98 percent of the swelling and white spots were gone. I was concerned about having an implant put in also. The procedure was not much diff than the monthly one. My doc did extra topical numbing then he did a lydacane injection. And lastly the implant which I barely felt any pressure
The recovery took 3 to 4 days before I no longer had the something in my eye pain. I am getting the long lasting in two weeks. I am glad I was able to do this its definitely helped me.
I hope I have helped you to decide and maybe eased your fears.
Hi thanks for the reply driveninsane!
Time has passed since my post, I'm now on implant number 2 ( review of this one due next month). Your info would have helped though. Thanks again. Best wishes to you going forward.
Hi I had the 3 month steroid injection and at my 8 week checkup my vision had improved 60 percent. I have not had all the floaters etc. I am going the 30th to have longer term implant done. Were doing it about 2 weeksa ahead of the wearing off of the first one because the longer one releases slower and we don't want new one to have to play catch up. Ill let ya know how it all goes hopefully it will be enough to continue keeping the swelling down.
Has anyone had an experience like mine with an eye surgeon?
