Vabysmo injections

[SB6]

Has anyone had the new Vabysmo injections for diabetic macular oedema? or any other injections? Please tell me your experiences, good and bad, and need to decide when to have mine done and absolutely scared as the opthamologist just reeled off a list of all the complications being 1 in 2000 of all the worst things, including worsening vision, cataracts, strokes, even death and I went into a tailspin trying to deal with it. Now trying to do some research before I have it done (I really don't want to have it done, but know I need to calm down, be an adult, and do it).

So please how have your experiences been, and results? as the complications scare me and I want full information and honesty so can mentally prepare myself whether the good or bad happens.

 

[domcar]

Has anyone had the new Vabysmo injections for diabetic macular oedema? or any other injections? Please tell me your experiences, good and bad, and need to decide when to have mine done and absolutely scared as the opthamologist just reeled off a list of all the complications being 1 in 2000 of all the worst things, including worsening vision, cataracts, strokes, even death and I went into a tailspin trying to deal with it. Now trying to do some research before I have it done (I really don't want to have it done, but know I need to calm down, be an adult, and do it).

So please how have your experiences been, and results? as the complications scare me and I want full information and honesty so can mentally prepare myself whether the good or bad happens.

Hi @SB6

I'm a 30 year old male, who has been T1 since the age of 7. Whilst I can't speak personally for Vabysmo, I have had both Avastin, Ongavia and Lucentis injections (32 right eye, 22 left) over the last 4 years.

Sometimes its every 4 weeks, sometimes 6 weeks, sometimes 8 weeks before I reach my ''tipping point'' where I get more fluid in my right eye and have another injection and for my left this was also the case but have now gone 15 months without needing an injection in it. They have both (in combination with initial laser surgery) prevented any abnormal blood cell grow for quite a sustained period of time now.

Of course when they read the complications it's scary, but honestly, the risk level is low. The highest risk on there is the risk of infection from the injection site which is still low and is managed via iodine pre injection. I haven't had an issue in the last 4/5 years of eye injections and honestly, if you've been recommended them, I'd be inclined to do it. If you've been recommended them clinically then it will be in the long-term to save your eyesight. Whilst there is a very small chance of course something could go wrong, the alternative is not having them and eventually potentially losing or damaging your eyesight.

I've found them an absolute miracle. They've stabilized my PDR, I have 20/30 vision without glasses, keep on top of an oedema and prevent any new blood cell growth in abnormal areas. There's been 3 or 4 occasion over the last 12 months now for my right eye where the doctors have been 50/50 whether to not inject due to it being fairly stable and monitor again in 4 weeks to see if anything changes or to inject and for me to come back again in 8 weeks for a check and they've started giving me the choice, and each time I say ''please give me the injection''. Clinicians of course have to weigh up the need for an injection versus the risk so if they're still offering an injection without the need at that time then that suggests the risk is very low.

There's so many injection brands and types out there and the main complication lists are similar as I believe the main risk factor is the physical injection site which is the same for all of them. Don't quote me on that, but I have (as I imagine you have too) consumed a lot of information in my panic over my eyes throughout the years!

The injection itself I find is also nothing to worry about. They numb you up to high heaven. If you have any questions please just ask either on here or via PM and please keep us updated with what you decide to do!

 

[domcar]

Also @SB6 I was about so signpost to some threads I posted a few years ago when I was starting treatment and was very confused and had a lot of helpful and informative answers. It turns out I have two profile on here, no idea how I've managed that! (Sorry admins!)

If you go onto https://www.diabetes.co.uk/forum/members/domoboy.533931/ and look at posts from a few years ago there should be a useful thread or two there if you'd like anymore reading. I was just reading your other thread and I noticed you mentioned in regards to regain and hair and I was also in the same boat where I was taking minoxidil and finasterdie and during that period (whether connected or not, who knows) had to start laser eye surgery again and then googled and noted there was a possibility it could be a cause and stopped it. Uncanny!

 

[T1Mum4]

Hey,
Iv had many many injections in both eyes. I think approx 40 in each, maybe slightly more in the right.
I started on lucentis then eylea then had 2 or 3 vabismo (before stopping all injections when I got pregnant).

If I remember correctly the main benefit of vabismo is the length of time between doses can be as long as 16 weeks. Which is much better than every 4 I was having with the others.

Injections really kept my PDR stable as the other poster here stated.
Everyone is different but I do feel the idea and thought of them is so much worse than they actually are. Don’t feel a thing and once you’ve done it once, you’ll find it much easier for any after. It’s always the unknown that’s the hardest thing to deal with!

Good luck

 

[SB6]

Thankyou so much for replying. Sorry it took til now to respond myself. I was in panic mode the time I was writing this and had been ever since they told me, I don't know why I was in such denial I would skip this progression by "getting my **** together". Always have plans to do the strictest diet, try to reverse this. The doctors are never sure why I don't respond to medication as they have on many occasions wondered if my T2 was T1.

But after a good 10days of panic attacks, I ended up in A&E yesterday with fully blurred vision in one eye, could not read/see/it was like someone put vaseline on my eye. After near 6hrs still didn't see anyone other than a nurse who called a registrar who sent me home saying "it sounds fine" and to go back if it worsens. I still do not know what it was, or how bad it could have been, as they just sent me home, but THANK GOD! It eased off, I've had issues for years with my vision going from 20/20 to long sighted and then short sighted to now having floaters and scotomas and then this. Its a neverending panic trying to work out if this is just ageing process or diabetes.

Ive been waiting for opthamology to get back in touch, a secretary did today, my consultant is on holiday (who I have never met) so still nobody to speak to.

It is weird about the Regaine thing, as I had heard of it causing blurred vision and floaters and due to it increasing blood flow, surely it could be a factor, but a registrar said "no idea" so I don't know how dangerous it could be to continue, however I have used it for over 10months.

Still unsure when need to start injections, nobody has said how serious/urgent the need is. So I am in constant panic of the unknown.

I wanted to know if things like eye vitamins (I was taking some from nutravita) helped or using Macushield (said to help AMD but no idea of DMO). But nobody seems to have answers. I had been taking Apple CIder Vinegar with cayenne and black pepper too to try make metformin more effective so unsure if these things ive been trying could have exacerbated this DMO. I dunno......


Guess tons of questions, never met any consultants yet so unlikely to get answers. This forum is a godsend though, nobody has been able to give me any advice so I turned to here and thankyou so much. THIS is the real reviews we need, not nurses telling us their opinions when they haven't experienced it.

I guess the ageing process and going short sighted has causes a bit too much anxiety too as I never know what the changes are linked to, age or diabetes.

But definitely want to know if regaine was a factor.

I am yet to have it done, just scared of all the things that can go wrong, read online the more you have the more complications can develop like glaucoma/cataracts/strokes/etc. Even death.

And I STUPIDLY googled vabysmo and saw the trial results (deaths). God I am an idiot! I mean it is a new product and it DOES sound (from some websites) to be a good product, possibly the best. But I have no idea. I don't know if the injections are the first line of treatment or laser. But both sound scary. I can only hope to stay brave (encouraged by these responses) and do it, and can only hope I have the good results you have had.

 

[SB6]

Hey,
Iv had many many injections in both eyes. I think approx 40 in each, maybe slightly more in the right.
I started on lucentis then eylea then had 2 or 3 vabismo (before stopping all injections when I got pregnant).

If I remember correctly the main benefit of vabismo is the length of time between doses can be as long as 16 weeks. Which is much better than every 4 I was having with the others.

Injections really kept my PDR stable as the other poster here stated.
Everyone is different but I do feel the idea and thought of them is so much worse than they actually are. Don’t feel a thing and once you’ve done it once, you’ll find it much easier for any after. It’s always the unknown that’s the hardest thing to deal with!

Good luck

Oof, it just seems soooooo many. I know T1 patients have much more struggles with this, but the idea of that many scares me. One is enough for my panicked mind.

Not many people have answered here so I always wonder how many people are having it done, even tried searching twitter to see if anyone posted their experiences. But you are brave having that many.
Hope your pregnancy has gone easy, I know it can mess with diabetes a lot. And I hope you stay stable in this time now you have had a break from the injections.

Did it improve your vision at all? I don't know if I am stupid but I was waiting for tons of people to reply here with some good reviews and some bad. I guess I want to prepare myself for all possibilities.

Thanks, I am trying to calm down the panic mode I am in, not got a date yet, so just waiting to hear when.

 

[SB6]

Yes, the regaine thing is definitely something I want to know, I have used it for 10months now, but if its a huge cause for exacerbating this, definitely don't want to do that. I mean, who can we ask?? its confusing.

 

[domcar]

@SB6 In terms of the macushield etc it's something I instantly started taking when I was in a panic also. Same for pine tree extract etc. No idea if it actually does anything but went for it and still do. (Actually got a cheaper alternative version of the macushield from amazon instead).

One of the things I did probably a couple of years into my journey (back at a time before stuff like ongavia and other bio-similar were available) when the NHS were reluctant to inject due to cost unless you were at a certain threshold, therefore leaving you in a stage of DMO and therefore waiting for it to get worse before they took action was I paid to see a private consultant at the Royal Manchester Eye Hospital.

Fully worth the consultation price. All of the questions that I had put to the NHS doctors and either had a not sure, can't advise on that, or differing answers he was able to answer and also give me a bit more of an insight into the condition and the stage I was at. One of the questions I had was in regard to macushield etc and he said he wouldn't say its necessary, especially at my age as he'd expect I'd get all of the nutrients and vitamins in macushield from my diet but that even so it wouldn't hurt.

I make a point of trying to see him every 1.5/2 years just for a general check up, ask any questions I've had since the last visit and check in with him. Fee's aren't as bad as I thought as the initial consultation I think was £200 and any follow-ups at £100. I did once end up getting an Avastin injection from him at the point where the NHS were reluctant to inject which was costly but what a set-up the eye hospital has in Manchester! As mentioned, luckily my NHS trust are happy to inject with Ongavia doing the same job as lucentis and costing a fraction of the price.

If I see him I will ask about Minoxidil etc as I haven't taken it in a couple of years now but was looking into a possible hair transplant in the future. But also aware around the head swelling and that being close to the eyes so was going to ask him about that anyway

 

[SB6]

Thankyou for replying. It is interesting to know if anyone ever discovers things that help.

I guess we are all looking for answers, just a shame we have to find them from each other rather than the experts. I was using minoxidil for 10months, and it was helping, but now I am petrified to use it incase it HAS been a factor. I wish there were ways to find out what has been a factor. If a vitamin was issue then obviously knowing to cease would help. Its sooooooo confusing trying to navigate this, so I am very thankful for your replies. Kind of surprised not many on here have replied with experiences of vabysmo but it may be because it is a newer product (which is also kind of worrying).

It is worrying I still can't get hold of any consultants, all I get is receptionists, and the registrar I saw was quite blunt and only said I am at a threshold now where treatment is offered and then she reeled off all the worst things. I went away with so many questions, spent over a week on youtube, google, and social media looking for reviews, even videos of procedures, and its surprising how FEW people have shared their experiences online. Which makes me wonder, is it because its worked for them, or not. So many questions.
And I know it sounds silly but I was surprised that nurses actually do the injections, I don't know why I assumed it would be consultants/doctors.

Did you notice any changes with supplements you took like macushield? I can't really find any specific to these conditions other than the eye vitamins, but I am a vitamin obsessive, always trying to find something that works, but for this one, I am hitting a brick wall.

It worries me how little information there currently is on vabysmo, not even many comments here in forum on it, and thats the current one the hospital are using, I was silly reading the trial results and complications. It just increased the stress.

So many questions I can't find answers to, these are questions I emailed over. Random ones I know.


1. Can having injections worsen these conditions? As it says there’s if it does not work then there having them can create more risk the more you have of progression or complications. So how effective are they and have they infact worsened the condition in previous patients?


2. Could using Regaine worsen retinopathy/maculopathy/oedema as it increases blood flow to areas applied with few inch radius?.

3. I was taking eye vitamins by nutravita called “natural eye complex” with lutein, zeaxanthin and bilberry and wonder if that may have helped or worsened it.

4. I was curious if the supplement “macushield” was helpful as it’s designed for AMD and I know diabetic macular oedema is different but curious if I take it would it help at all?

5. I started taking apple cider vinegar supplements with black pepper and cayenne pepper alongside my metformin as heard it can make it more efficient in lowering sugars and wonder if that could have cause more eye issues? or made the medication ineffective.

6. Is there anything I need to avoid to avoid making these conditions worse as someone said to avoid certain exercises, lifting heavy things, and even rollercoasters as can increase pressure?

7. Would oxygen therapy help retinopathy/maculopathy/diabetic macula oedema? As in hyperbaric oxygen therapy? As a study online found it reduced swelling and inflammation and just curious if it may help either before or after treatment? As it is said to increase chance of cataracts/glaucoma but would it be helpful?

8. Are red light therapy face masks safe to use with retinopathy/maculopathy/oedema?

9. I’ve noticed my eyes in the past week are getting dry and looked into eye drops (hycosan) are they safe to use given my diagnosis? Would they affect the macular oedema?

10. And are there any supplements that may have contributed to this as I take about 20 supplements a day.


Not sure if they can or even will answer (seems everyone is on annual leave), I was actually googling local consultants, don't really know what I am doing to be honest. I can't find many near me locally.