I am 26 years old and last year was diagnosed with myopic CNV and PIC in my left eye. I’ve just had my 6th Lucentis injection. I am going back to see the doctor next week to discuss immunosuppressant treatment. I would be keen to know anyone’s experience from taking these? (The side effects alone have frightened me off) As well as any tips or lifestyle changes anyone has made that has helped (no matter how big or small) their condition? I find it hard to stay positive sometimes given I am so young and have been told this is now chronic. Greatly appreciate anyone’s advice/help please.
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Janki_x
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Hi, I can't offer advice on your condition but am sending you hugs XXX
I don't know if any of the available tech would help maximise your vision, now or in the future, but its worth looking on YouTube - check out blindlifesam who has stargadts, he has a range of vids about living the best life you can and also demos lots of tech. Hes American but most of the tech is available in the UK. We've used a company called VisionAid who gave us free demos at home ( there are others, just google). It can be pricey but think of the years you'll use it and the benefits and you may find its worth it, we have.
Make sure you get all benefits you're entitled to. The PIP particularly is to cover costs associated with your disability, we've used it for hubby's tech.
Hopefully it will give you some hope for the future, life is still livable x
PS
Twasbrillig often puts posts on here about more mainstream tech, you can search her posts. There's also a series of pinned posts on here she created called Useful Stuff - includes tech, gadgets, and new ways of doing stuff etc.
I have myopic cnv last year, just turned 43. Drs confirmed I don't have PIC, but I have had immune issues in the past with arthritis at 36 (though I never started the immunosuppressant even when my rheumy urged me to). 2 lucentis jabs seem to hold the fort for now.
I did a few things when I had my arthritis, which was mainly avoiding foods that causes inflammation to my joints (mostly, eggs). I did a food elimination diet first to figure out which foods and then an iGg blood test for allergic foods. I also did accupuncture. I find food avoidance the best in reducing inflammation. You might want to consider getting yourself checked for any foods your body might be reacting to, and try to see if it helps with your situation by food avoidance for a few months.
Currently, with myopic cnv, I'm still avoiding those foods, and had attended eye therapy (using the William Bates method to relax the eye) and having weekly accupuncture sessions (as I have other health issues like recurrent UTI just before my CNV). I have also cut back on my work hours, to cut down on the stress levels.
I must add though, if I have been diagnosed with PIC, I would seriously consider taking the immunosuppressants on top of any natural way of avoiding inflammation. I did not take it for my arthritis as I felt the trade off for twisted joints in the hand are not as bad as the side effects of the drug (my joints are now fine despite the drs warning), though with the eyes, I will so anything to save it!
Hope you can find a way to stabilize your condition soon. It is very frightening to get this disease.
Hi. I have just come across your post having been newly diagnosed with PIC (last week). I’ve had the first of 3 ‘rescue’ injections and a long term plan will be made in 3 months time after they have reviewed the success of the treatment. Interested to know how successful your immunosuppressant treatment has been and whether you made any specific lifestyle changes that made a difference. Hoping your sight has been stabilised.
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