Latest WMD treatment

[pollyanna76]

Has anyone seen info on possible eye drops being developed in place of injections.?

[Catseyes235]

Yes I heard something but it seems a long way off! The media are great at raising our hopes about what is in the pipeline but good to know it is being worked on. Meanwhile I'll keep taking the injections!

[pollyanna76 in reply to Catseyes235]

Thankyou for your comment.let's hope we won't have to wait too long.

[Whitegoose in reply to Catseyes235]

I too have heard of the eye drops and only yesterday wrote to nhs eye trials clinic, to offer to join any trial working on this project. I’m prepared to travel. I’ve been receiving Eyelea injections for 8 months now, with intervals. I find them very painful, especially the last one. I already have the stronger drops, but my eye still feels pain. I think they must be sensitive. After a cataract op, I felt the whole procedure, the consultant was aware that I could feel everything and said we will give you an eye block for the other eye. Then having had an eye block, no pain, but then immediately afterwards my macular generation started in that eye. The consultant said it was nothing to do with the operation, it highlights conditions once the cataract is removed. I also have dry in the other, but in that eye, apparently my sight is good.

[pollyanna76 in reply to Whitegoose]

Hi whitegoose, sorry to hear about all that you are going through.what did NHS eye clinic say to your offer to take part in the trials?.you sound like a very brave person..

[Whitegoose in reply to pollyanna76]

Hello Pollyanna, thank you for your kind comment, I have not yet received a reply to my email as yet, I’ll let you know when I do. I think to help on any trial to improve all our situations is worth while. I’m not really brave, but hope that eye drops are the way forward . I know stem cell implants have just been trialed, but that will be years away for general use. It is great that all this research is going on. x

[pollyanna76 in reply to Whitegoose]

Take care white goose.x

[Whitegoose in reply to pollyanna76]

Hi Pollyanna, I have had a reply from the trials, they have 2 at the moment at Moorfields London, (I live in Lincolnshire) the one I would have been interested in, the closing recruitment date is the 4th August. Which is for further stem cell investigations (in a nut shell) you have first to go to your GP,

get referred to the hospital where the trial is recruiting. They will take you on as a patient from your existing hospital. You wait for an appointment. Then they give a routine eye check, you tell them you are interested in trials, if they think you maybe eligible, they will let you know. So you are not guaranteed to be chosen. In my case to get to the trials, the hospital is 120 miles away. If I’m not chosen, I would still have to travel to them as their patient for my regular eyelea injections.

I have decided to wait until a hospital a little nearer starts a trial. Not as simple as I thought. I am still interested in participating in a trial if it’s a little closer to where I live.

[pollyanna76 in reply to Whitegoose]

Hi whitegoose,thankyou for information about trials.I guess you would have to make sure if you took part in any trial that your ongoing injections are kept up and you certainly wouldn't want the inconvenience of having to travel miles.let's hope you are offered somewhere nearer to take part .wishing all the very best and keep us all updated on your progress.

[Catseyes235 in reply to Whitegoose]

I'm afraid you're unlikely to be chosen for trials as they rarely take self selected people. May just take randomly selected sample from the thousands of us with the disease. We who are receiving injections should count ourselves lucky as it is not many years ago that there was no significant treatment which is why my oldest brother is registered blind while I and my other brother are having Eyelea injections which seem to be stopping the progress of AMD. There may be a genetic component too given that 3/5 of siblings have the condition!

[Whitegoose in reply to Catseyes235]

Hello Catseyes, I’m sorry to hear of you & your families eye problems, I was told by my consultant that AMD can be genetic. I do consider my self lucky to be having treatment, but I know on clinical nhs trials they have recruitment for various illnesses. You have to register and if you meet their criteria, you may be lucky to be selected. Go to nihr.ac.uk

It tells you what trials they are recruiting for.

[Catseyes235 in reply to Whitegoose]

Thanks for that. Funny thing no one can think of any stories of any blood relative in olde generations with visual disability and lots of them (but not our oarents) lived to a ripe old age. My aunt, brother, daughter and myself all have thyroid probs and my sisters three children have just discovered, in their forties, they all have haemochromatosis which means that I may be a carrier but daughters father wasn't thankfully. Asthma also in daughter and cousins so sure we could contribute something to genetic science! I signed up to take part in a national bio resources study about 15+ years ago but as all is random no one knows what they are discovering.

Btw having had an injection today. I can't wait for drops!! Not the best I've had so left feeling bit gritty at the moment.

[Whitegoose in reply to Catseyes235]

Do you live in the UK, I’ve heard that gel eye drops help after an injection, but I have not been able to source them yet. We are very complex beings, my mom had vascular dementia, and it scares me to death that I might inherit it. They say it’s not a heritable disease, so many are.

[Hidden in reply to Whitegoose]

Hi whitegoose, they're not a gel but they are thicker than other drops - Hylotear.

I use them daily as well as post inj and have found them better than hypromellose drops, esp in the winter. I get mine on prescription from my gp ( got a prepay card so don't know how much they are to buy).

[Whitegoose in reply to Hidden]

Thank you, I will have a word with the doctor. x

[Catseyes235 in reply to Whitegoose]

Yes In UK. You can buy the stickier gel/ ointment Viscotears from most chemists. I had thyroid eye disease 20 years ago and they were invaluable overnight when could not close eyes properly and after the various ops I had. Can't use them if driving as bit like Vaseline. I get Superdrug Moisturising eye drops which are hypromellose - same as hospital drops. They are cheaper than anywhere else and at the mo they are 'buy one get one half price' and I use liberally, store in the fridge and chuck after a few weeks. Feeling better and soothed after lots of drops, tea and sleep and two paracetamol earlier.

Oh and good news - injections extended to every 12 weeks - yay!

[Catseyes235 in reply to Whitegoose]

Sorry in one response you say you were told it can be genetic then say it is not heritable but genes are heritable!

[ironbrain]

Yes, my post here:

healthunlocked.com/maculars...

For sure, they'd get a move on with rolling them out if they were faced with having injections.

Really though, I'm looking forward to the day when they can get stem cells to go just where they're needed and develop just as they're required to.

[RP1944]

Where did you see that information? Sounds lovely, much nicer than injections. Let's hope we don't have to wait too long for new treatment.

[Eyes2go]

University ofBirmingham are doing the work on this I think they hope to have them rolled out by 2023

[pollyanna76]

Hi info on Google news on Sunday .university at birmingham also bristol are working on eye drops that can penetrate to back of the eye.fingers crossed this new treatment will be available if it is found to be effective.

[StokeySue in reply to pollyanna76]

Yes, that's the point, the new eye drops they are testing contain a helper protein that carries the anti-VEGF treatment to where it is needed within the structure of the eye, so it kind of replaces the syringe and needle as a way of positioning the anti-VEGF. This now seems to work (hence the news items) but it will take a while to find out if it is safe and effective in humans, and if so which anti-VEGF treatments can be used with it, and what the treatment schedule should be.

Believe it or not a five year program (to 2023) of development is actually fairly rapid for this sort of thing, there's so much science and a fair bit of regulation to go through.

[pollyanna76]

Thankyou very much for all that info.Thankfully modern science is always coming up with new and better treatments and giving us hope for the future

[Ceri2]

Hi,

There is a good article on this on the Macular Society website at the moment. It’s under News and is dated 19 July. 😀

[marianS]

Hi Pollyanna,

You may be interested to see some information from a colleague at the Macular Society who is the Research Manager in response to an enquirer to us. She keeps abreast of current medical and research developments and keeping staff and members informed, and liaising with the medical and research professionals.

"Thank you for your enquiry about eye drops for wet AMD. This would certainly be a very welcome development and the team at University of Birmingham are not the only ones working towards this goal. However, their research was in various animals and would need to go through clinical trials to prove its effectiveness in humans, before it could become a licensed treatment.

A US company called SciFluor Life Sciences are further along the pathway towards an eye drop treatment and announced the successful results of their latest clinical trial of a drug called SF0166, in December 2017.

scifluor.com/media-center/d...

This was an early stage trial (Phase I/II) and I would expect the company will now go on to carry out a Phase III trial, which will involve many more patients. If that is successful they will seek a license from the relevant authorities and it should become available to doctors.

"

I hope you and others will find this interesting.

Just to make you aware, we are currently offering free 6 month membership. This is a good way to keep up with current developments and you can join by following this link:

macularsociety.org/6months

Please do not hesitate to contact us if we can be of any future help , either by email or ringing the Macular Society Helpline which is open 9am – 5pm Monday to Friday on 0300 3030 111.

Kind regards,

From the Macular Society Helpline

[pollyanna76]

Thankyou! Marian s . I am so happy to hear that these alternative treatments will one day take the place of injections. I am very fortunate because I am under the care of the of the sussex eye hospital and I can't praise them enough,

[pollyanna76]

Good morning catseyes235 I am sorry to hear of all the eye problems experienced by you and your family.its hard enough when its just you.as you say we are so lucky to get the injections .

[Clongowes]

Dear Pollyanna76,

Yes I did see the reports in the national press and take on board Catseyes235's cautionary note.

But the treatment experiment was also reported on Pg 20 of the Macular Society's Spotlight 2018 where Dr Felicity de Cogan concluded: " We are now conducting further research on rabbit eyes which are a similar size to human eyes.

"If these are successful, clinical trials on humans could begin in 2019."

The Press reports also highlighted a fact, not known to the general population, that there are 600,000 of us with macular diseases. What they did not say is that nearly all those 600,000 have one or more family members affected by their impairment.

That's more than 1.200.000 affected in one way or another. That's an awful lot of potential voters !

Perhaps it is time, maybe through the Macular Society, that a letter could be drafted calling for more help with research which all 1,200,000 could send to their local MP.

Call it blackmail if you want, but these people want to keep their seats in Parliament and that is an awful lot of potential votes to loose.

Just thinking aloud........

[pollyanna76 in reply to Clongowes]

Dear clongowes, that is a brilliant idea.Hopefully our macular society will help us with that.after all if this research gets a government grant it will save money money in the long run because improved treatment will! Stop us and the next generation becoming disabled because of sight loss.

[Clongowes in reply to pollyanna76]

Have you seen the latest issue of Macular News about the Birmingham experiments moving on to larger animals. Sounds promising

[pollyanna76]

Thankyou clongowes.I will check macular news .hopefully it wont be too long before we can reap the benefits of these experiments .