Not great news today

[Annsandra13]

After being told my leakage was improving a month ago, my consultant today said it has began to increase again and he thinks Avastin isn’t working? Although I had a further Avastin injection today he has asked me to think about using a different brand.

I am not feeling very confident with this consultant as the injections ( the last 3 with him have been very much more painful} and have gone into a bit of shiock afterwards.the previous 3 from the original doctor were just uncomfortable in comparison , and despite being private he is always running late and seems a bit nervy at times and takes too much time over the preparation.

I explained that my eye ball seemed quite painful during the month.

He looked at the back of my eyes and says there is a small bleed at the back of the eye.

I feel a bit confused any advice would be welcome.

Thanks Ann

[Retired130]

I started Avastin injection in my right eye WMD) in May of 2016. Was getting one every 4 weeks. After 5 injections 4 weeks apart my retina specialist decided we should try to extend the time interval. So we tried 5 weeks and there was no improvement, but no regression. So we tried 6 weeks. After 6 weeks, my eye had regressed all the way back to what it was in May of 2016, so we continued the Avastin on a 4 week interval. However, in May of 2018, my eye showed a small bit of regression after the 4 weeks & in June of 2018, the scan showed major regression after the 4 weeks, so in June I was switched to Eylia. Got Eylia in June & 4 weeks later got another Eylia shot in July. By September, the scan showed recovery back to the best it ever was, so we went for a 5 week interval & the scan showed a slight improvement even after 5 weeks. I am scheduled for another scan & an Eylia injection on November 29th & that will again be after 5 weeks. If the scan shows a slight improvement or even just holding its own, we will then try a 6 week interval.

So, in summery, for me, just like it seems for you, Avastin worked for a while, but then stopped working to a point where my eye was getting worse in just 4 weeks. I think this may happen to some people = Avastin stops working after a while (for me, about 2 years) & a switch must be made to a more expensive medicine such as Eylia. Hope whatever new injection your doctor gives you works as well as Eylia worked for me after the Avastin stopped working.

[Rosalyn-helpline Partner]

Dear Annsandra13,

It may be worth you contacting your ophthalmologist via their secretary with a list of queries and concerns. The injections should not be painful.

This is a link to our information on Pain after injections which you could use as a discussion point with them:

macularsociety.org/sites/de...

This is a link to our information on treatments:

macularsociety.org/sites/de...

Sometimes if one type of injection does not appear to be successfully stabilising the eye, then the ophthalmologist will consider swopping the patient to another form of injection, in case the slightly different ingredients provoke a more positive response.

Please do not hesitate to contact us if you would like to discuss this further. The Macular Society helpline is open 9am – 5pm Monday to Friday on 0300 3030 111.

Alternately, you can contact us via:

[e-mail]

Kind regards,

[tallyho]

I have just turned 50 and last week had my 90 th injection. I tried Avastin the lucentis and now Eylea and have just been told this is not working either. I don’t have AMD I have diabetes so have to contend with that too. I would def try any drug they are offering you because they are all slightly different. There is a new steroid coming out too that will last 3 years but not yet being used. I only know about it because my consultant is desperately looking for something else to use but in finding out it was a steroid relised I would have to stick to the anti veg f as I can’t have steroids as I am a steroid responder, if they are happy to try steroids and they can that might also be an option. Orzedex is one that is popular and lasts for 3 months.

Hope all goes well for you.

[Annsandra13 in reply to tallyho]

Thankyou Tallyho so very kind of you to send me the information, it is all such a minefield.

I will look into steroids now, I am now going back to the NHS system to see if the injections are any less painful and go through the different options.

I do hope the consultant can find you an alternative as sounds like you have been having a long and difficult time.

I wish you the best of luck, keep in touch.

Kindest regards

Ann