PDT

Hello everyone- I'm afraid I haven't posted anything for a while but I do read your posts occasionally. After having 9 Avastin on my eyes my surgeon is now usin Eylea - I ve only had 2 but a few weeks ago when I was in the UK my eyes got worse and once back home ( Portugal) he did an OCT test which confirmed they were worse, so I'm going to have 2 more Eylea but then I have an appointment in Lisbon to see a specialist about having PDT. Has anyone else had this done ? I have googled it and it sounds awful and I'm quite scared and would love to know more about it. Thanks.

[Ayayay80]

Hello janalgarve

So sorry to hear of your eye problems. Sorry also that I cannot give you any more information than what you have found out already. The not-knowing is scary, isn't it, but things often sound worse than what they are. I just want to send you my best wishes and hope that all goes well for you. Do keep us informed. x

[Hidden in reply to Ayayay80]

Thank you so much for your good wishes and I will let you know - I have another Eylea injection tomorrow which I still hate as it's so sore for a day or two but it's all for the best hopefully xx

[Hidden]

Hi janalgarve, have you rung or emailed the macular society? I'm sure they would be able to tell you more - they have "buddies" who have had specific treatments and help others with them x

[Hidden in reply to Hidden]

Thank you eyesright I might just try that xx

[Hidden]

Hi Jan, just had a thought, before they put me on eylea it was suggested I have a steroid implant as my damage is in an area not suitable for some direct treatments.

So it sounds like pdt is higher up the list of " good " treatments. I've googled it and although it sounds like it takes a few minutes, which of course is what we don't like, they must make it easy for you to keep still. Apart from that, having the stuff injected in you probably isn't bad (I've had fluoroscein angiography for my eye which was fine & other conditions' treatments involving similar).

I don't know how many rounds of eylea we get before they try other things but they are trying to help us so it's a balance. They can't make you have something you don't want but if you really can't face it ask them about the steroid implant? I have to be honest, I'd rather have the pdt lol. Our fears are always our own x

Best of luck going forward x

[Hidden in reply to Hidden]

Thank you eyesright, I will ask about the implant and I wish you the very best xx

[180164]

Hi I've had 8 pdt treatment 21st one 6 years ago. Nothing to worry about : )

[Hidden in reply to 180164]

Hi 180164 can you tell me about it and whether you had any side effects - I live in Portugal where the sun is shining most of the time and I'm worried about not going out into the daylight for at least 3 days unless I cover up - does this apply to inside my villa where there is daylight? and did you feel ill afterwards or anything like that? 😳

[180164]

Hi. You will be injected with 2 lots of dyes before you go the different scanners. I do feel quite sick with all the bright flashes but it soon passes. You will then be taken into separate room for the actual treatment. It doesn't hurt. You will be a funny colour due to the dyes. Take dark glasses a cap and cover all the body as you will be prone to damage to the skin. I'm advised to stay out of direct sunlight and keep blinds shut for 48 hours. Please try not to worry. Without the treatment I'd of lost much more of my sight. Good luck : )

[Hidden in reply to 180164]

Thank you so much for replying - at least I know what to expect now 👀

[Hidden]

Thank you everyone about replying to my PDT fright! I have now had it done in both eyes as I have multi retinal derarchments in both eyes 👀 and Eylea just didn't work. I'm now at home in the darkness waiting until Sunday when I might venture outside but the sun is so strong here , so I might go out early morning or in the evening. The procedure wasn't too bad but the poor Dr had trouble finding a strong enough vein, after the fourth go he found one, so I'm now black and blue!!!! After 5 minutes the specialist took me in and sat me down and put what looked liked a large contact lens in my eye and lasered, then the same with other one. I had to cover every inch of my body and I looked like something out of a horror film! I've been feeling sick and had low backache all yesterday but feeling a bit better with my cuppa now. Hopes this helps anyone else who has to go through it 💕👀x

[Hidden]

Hi, I'm back again just to let you know that the PDT treatment didn't work and the specialist I saw in Lisbon said I had 2/3 years before I lose my central vision- which has scared me silly! My eye surgeon here has told me now that I have a very rare disease and also I have now got cataracts in both eyes - so I'm waiting for an appointment to have them done, then all he can do is put me back on the injections to keep the sight I have. I'm scared because if it does get worse I will have to sell my lovely villa and move to an area with shops nearby and also to a much smaller house but I need a little garden for my cats 🐱. Yesterday I had a lot of dark floaters with quite large black spots which I kept wanting to grab with my hand - I also get occasional flashing lights. I thought a good nights sleep might help but it didn't as they are still as bad as yesterday! I did text my surgeon about them and he rung me last night but I missed his call! so I am hoping he will be in touch today - if not I will make an appt to see him next week. Lots of love to you all x