First-ever treatment for dry age-related macular degeneration
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- Опубліковано 6 чер 2024
- It’s the topic everyone with age-related macular degeneration is talking about - the first ever treatment for dry AMD.
Do you want to know more about the treatment, known as Syfovre? For this month's webinar we were joined by consultant ophthalmologist and retinal surgeon Ian Pearce. He reveals more about the drug from the clinical trial data and answers our questions.
Why on earth in this world of incredible technology and research is there no treatment to stop dry macular degeneration from progressing! Are there just not enough people interested?
I would highly recommend a video by Chris Noble MD called "Prevent & Treat Age-Related Macular Degeneration (AMD) with an Ancestral Diet
I think the name is knobie
Yes. He is wonderful.
OpRegen by Lineage Cell Therapeutics, an RPE cell transplant, has better stats, and is hopefully approved ASAP. OpRegen was licensed to Roche Genentech, and is currently in phase IIa, for 50-60 patients, at several study sites in the US. Whereas the compliment inhibitors slow progression by 15 to 20%, OpRegen has stopped and reversed it, so a whole different level of effectiveness. “Stopped“ is equivalent to 100% reduction. Miracles are coming!
I have Best disease, which is primarily an RPE disease (at least in its first stages), so I can't wait for this to become available! And yes, we need nothing short of miracles here with these kinds of diseases!
Great news! Thank you Dr. Pearce for explaining this so clearly.
Thank you for this Info!
Incredibly helpful and informative, thank you!
Thank you from a newly-diagnosed American. Very informative and helpful. I will be visiting Duke Ophthalmology soon.
Many thank,s Macular Society for giving the floor to these experts who give us hope...Thank you Sir for a marvellous hour of informative and possible futuristic treatments.. n
Question:
Has this Mascular Society and the professor never heard about the many successfull treadments in Austria, Germany and USA with DMSO (Dimethyl sulfoxide) mixed with saline solution at a ratio of 3% to 97%, which are used as eye drops and reommended from independent doctors (natural medicine / holistic medicine) ???
Or is this a channel spondored by tthe pharma industry, optician or or eye surgeon industry?
Hello May i contact you? How do youknow this
Have you found any info on this?
He mentioned extending a year or two of vision. That is nice but it would be nice to see a heck of a lot longer. I hope they can soon extend that to years and years. 🙏🙏🙏
My husbnd was just diagnosed by a remarkably detached and dismissive Doctor here in the United States. We are now searching for help, and information.
Go on a keto or carnivore diet. If it is mild or newly discovered, that should take care of it. Do not rely on areds vitamins.
Utube has many Drs discussing importance of anti inflammatory diet( seed oils are especially problematic ) Ken Barry is a good start
Thank you for the video, I think I have a better understanding now.
I thought that wet was just a progression of the dry and not a separate condition but it seems in your synopsis that damages are caused in both conditions so slowing dry is a good thing to reduce deterioration but has a small increase of risk to progress to wet . I’ve had DMD since I was in my earlier 40’s and if a treatment could be used for dry there would be more hope,
As worsening sight is obviously something I’m constantly concerned about with work/life.
Unless I can get some A’ eyes.
Habe es auch...live with it...c est la vie...the right eye...auge....day by day...
J in
Empowering. The PATIENT. THANKS: GODSPEED
Let's talk "stem cell" research therapy!
Very informative, many thanks for your expertise
Edit: my mother has dry amd and it will be lovely if any of you can suggest some good quality sunglasses brands!
Best stay away fr sun,if poss.
Hi Frankie, sorry to hear about your mother's diagnosis. I'd recommend you give our team a call and we can talk through the best options. Our number is 0300 3030 111 (Monday - Friday, 9am - 5pm)
I live in South Carolina and these injections are available now at a cost of $2500 each eye per month. 4-6 months before we know if insurance companies are going to cover this.
The lineage treatment (see my comment below) was tried on one patient with Startgarts disease in Israel, I think. Sorry, I do not know what the results were.
50 Pounds Sterling in the Single Non-Profit Insurer National Health System, UK, per injection, there are no "Socialized Capitalized Middlemen Profiteers" to suck the blood out of citizens going blind.
I am waiting for my follow up after a tear in my retina which was laser treated in may. Ive added macu pro over the past couple months not sure if its my eyesight repairing from the repair or the addition of this but my sight seems better. I also take omega 3.
Words used to be wiggley in my right eye ,now its like looking through a block of ice.
Scotland thank you for this information I failed my eye test & cant drive now also I can’t read very long & not clear now miss all this very much , don’t know how much I am going to manage for long Anne dry form of Macular degeneration
Hi Anne. We are really sorry to hear this. Please know that you don't need to go through this on your own, we are always here to answer your questions or to just give you someone to talk to. Our Advice and Information team are on the phones from 9am - 5pm on weekdays, and you can call them on 0300 3030 111. Please do call us.
Re read these comments.
Very informative . A ray of hope for patients of ARMD dry. Pl inform if the treatment is available in India or Australia
Hi, thanks for your comment. We are a UK based charity so we are only up to date on treatments in the UK. If you contact your Ophthalmologist they will be able to inform you whether the treatment is available in your home country. Thanks
@@MacularSociety Thanks for attending my quarry . Society is really serving the people who are in need .🙏🏾🙏🏾
Hi ,does Syfovre will treat stargardt? Thanks.
The visual cycle modulator drugs under clinical trials should be far more promising for Stargardt. And they also come in pill form, thankfully - not as painful injections.
The lineage treatment (see my comment below) was tried on one patient with Startgarts disease in Israel, I think. Sorry, I do not know what the results were.
Unfortunately, only patients with late-stage dry AMD were enrolled on the trials for this drug. There is currently no evidence to support its use to treat any other macular conditions.
I know that, I will not get an answer ,as this video was uploaded 8 months ago. But if so, I would like to mention that this video was the most informative and understandable that I have seen on UA-cam. I am 86 ,and have no hope that a cure will be available in the near future for me. But, this I would like to convey to you. Why shouldn't The Swiss medic. which approves all medications, not allow a German product ,which is also very good, and 15 times cheaper ,to be applicated ? I have to pay 10 % of the costs, of about £1,200 myself. Already have had 14 injections over the last 3 years. best regards Dr, and thank you.
We pray and hope that medication es approved as soon as posible...God’s WILL...Amen.
Does insurance cover these injections
Hi Margaret, you will need to contact your insurance company directly to ask this. Thanks
Only Roche's OpRegen has shown to reverse GA with some improvement in vision.
As an optometrist I would seriously consider advising patients who can afford it to try and enrol in the US Ph2a trial for dosing, even though we don't yet have a good understanding of the long-term outcomes. Unfortunately GA will eventually lead to blindness, which means for some patients it will make sense to take on risk in an investigational, as yet unapproved therapy.
I had 20/20 visiona doctor gave me Ceftin an antibiotic within 2 weeks my eyesight worsened. Now, I have Macular Degeneration.
What does "cost effective" mean in regards to a drug?
Hi David. In the context of medication, the most 'cost-effective' option is finding a balance between the financial cost of medication for the NHS and the benefits it provides in terms of health outcomes. A medication would be considered as being 'cost-effective' when the benefits for those that take it outweigh the potential cost financially. This decision would look at lots of different criteria, which would include health outcomes for patients, as well as the impact of quality of life for patients.
@@MacularSociety Thank you for your reply. Obviously the Macular Society is a real and concerned entity. For myself, I just suffer from the condition and look (sic) forward to being blind in the last years of my life and therefore, perhaps , take a more personal view of the condition and of the financial considerations around what a drug is worth. Or more correctly put, at what point does the development of a drug stop being a social decision and is rather a commercial one? To get back to my original query "what is cost effectiveness in regards to a drug". It seems to me that the actual answer is that a drug will be developed into a disease or condition that will provide the drug manufacturer with the best financial return. Which, by definition, leads to drugs aimed at those that can afford them.The justification for the astronomical price of new drugs is that they pay for the future costs of developing new drugs but which actually seem to be providing the shareholders of the drug manufacturers with massive, even excessive, returns.
Can you please give the name of this drug that is injected. Will it be done in AUSTRALIA?
The drug is called Syfovre and you can find out more on our website. Unfortunately, we do not know when it will be available in Australia but I'm sure if you ask your ophthalmologist they will be able to pass on any information that is available. www.macularsociety.org/about/media/news/2023/april/yourquestions/
Is the medicine and treatment 58:32 available in India?
@@rishiramgupta6572 you would need to contact your local ophthalmologist to ask this. Unfortunately, where we are a UK charity we don't have details on treatments or support available worldwide.
Okay. Pls get on with the positive bit!
HELP ME PLEASE
what is a treatment for
Bilateral bull's eye macular dystrophy
If you are based in the UK, I would recommend you give our helpline a call and we can discuss with you. Our number is 0300 3030 111. Thanks
Are stem cells injection possible?
There is currently no treatment available using stem cells, but it is something that is still being explored through research. Any research updates can be found on our website, so please keep an eye on our website to keep yourself up to date: www.macularsociety.org/
a million thanks for this sharing of hope, Dr.
i think there are another alternative which i have used to get from my RP vision from 10% to about 30% in 5 months. still a long way to recovery fully from RP
And what is your alternative method to improve your vision?
Really? How nice for you! But please tell others the name of the treatment or the provider so everyone can celebrate.
High quality Castor oil will stop cataracts from developing.
Put a few drops in each eye at night (bedtime) , 2-3 times per week.
Can be used nightly if needed.
@ShellyMi2008 @harriet1844 i will reply further in my email . thanks 😊
I was wondering what the mechanism was for a supplement like Taurine to reduce my night vision? I am taking 1000 mg per day. If I increase the dose to 2000 mg a further reduction occurs. What the devil would be the active method this is occurring?
Thanks for your question. We would recommend that you speak to your ophthalmologist regarding any supplements that you plan on taking. They will be able to tell you what would be best for you in your individual circumstances
In looking at the website for the Macular Society I see one very important individual missing. This shows me that your group is missing current knowledge and as such you are not giving the public the full benefit of current knowledge. Please tell patients with early stages to take Macu-Shield or MacuHealth . Depending on where they live one or the other should be available and they are the same formula. This along with Omega 3 high in DHA will have a positive effect for many patients. I know because my eyes no longer show any attributes of macular degeneration.
I take MacuShield and have done for many years. Would you suggest also taking Omega3 supplements? Is it possible to take too much? Thanks
Syfovre can cure stargardt desease please help me
No, and to be honest it's not that good of a drug even for regular macular degeneration. Additional potential negative side effects on top of the usual ones of intravitreal injections, expensive, and not that great at only 20% reduction of atrophy. Don't get me wrong, for many people it might be better than nothing, but it's far from a magic bullet. For Stargardt you should look into drugs like the ALK-001 (a modified form of vitamin A that leads to less toxic junk accumulating in the retina). Even better, they come in the form of pills, so no painful eye injections required. Although they probably won't fix the the damage that already happened. And there are RPE stem cell treatments under development for all diseases under this category. I am also watching closely because I got Best disease.
Unfortunately, only patients with late-stage dry AMD were enrolled on the trials for this drug. There is currently no evidence to support its use to treat any other macular conditions.
There should be absolutely no need for new drugs to be so expensive that people dont have access to them. Its just pure greed.
I have amd in both eyes. Dry in left . Wet in the right. My eye doctor didn't say anything about boths eyes having Amd. I was having hard time seeing. Went to my eye doctor. Have new glasses which I couldn't use. Went back to my eye doctor, to be told oh yes you have amd. But right has scaring. Got two shots in the right eye to be told oh. Nothing will help my vision in right. Have catracts in both eyes. Why do eye doctors not talk to each other.
i need more than just talk,
Hi George, if you need any advice or support, please do make sure you give our helpline a call. Our number is 0300 3030 111 - we are always here to help.