Should Mum have the treatment?

Hello,

My 92 year old Mum has wet AMD. She has been to the hospital and they have signed her up for injections, but she is worried, quite naturally, about all the possible side effects, including the possibility of heart attack etc. She is very healthy and very active. She still lives on her own and I don't live terribly close but do go up to take her to hospital appointments.

I don't really feel we had enough time to question the consultant about the possible side effects, risks or whether she is likely to lose her sight if she does not have the injections.

I would welcome your thoughts on the matter.

Many thanks.

Mel

28 Replies

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  • Hi Mel, firstly sending a hug to both of you x it's not an easy diagnosis to hear x

    My own personal opinion is that the risks are small compared with the possibility of losing sight (I have different condition but same outlook).

    Without my sight I would be unable to do all the things I enjoy and although I'm sure would adjust the thought is terrifying.

    May I suggest you ring the Macular Society for advice and information. they are very good. sorry I don't have the tel to hand but you can Google it.

    Best of luck to you going forward x

  • Thanks for your reply.....and the hug! Will ring on Mon.

  • Hi Mel I totally agree with eyesright, such a shame about your mum, obviously you need advice from doctors but losing ones sight is really tragic. Good luck and hope your mum gets treated quickly. There are lots of 90 plus folk getting this done. Hugs to you and your mum from Squinty xx keep us posted

  • Thanks Squinty. That's interesting that lots of older people are having it done. I will let you know how we get on. I really appreciate that you have taken time to reply.

  • What a horrible thing for you both to hear. There's no doubt in my mind that she should have the injections. When I was first diagnosed and told about the injections I read everything they gave me and was concerned about the risk of heart attack etc. I asked the dr of this was something that would happen straight away or later (it sounds silly now) and she said that she had never known the injections to cause heart attack or stroke but because it was a possibility they had to mention it. If it happens at all it is obviously very rare so I hope that will put your mum's mind at rest. I have always found that the thought of the injection is far, far worse than the reality and it will become much easier after the first one. I hope it all goes well xx

  • Thank you so much for your kind words. It's really helpful to have comments from someone who has personal experience. Thanks for your help.

  • Dear Mel

    I am sorry to learn of your mother’s diagnosis of wet Age-related Macular Degeneration (AMD) and can imagine her concern and dilemma about treatment. It is indeed important that she speaks with her consultant or a doctor to help her weigh the risks and come to a decision.

    At the Macular Society we can also provide information to help you and your mother in the decision process. Wet AMD can respond successfully to treatment, though not guaranteed. However, guidelines recommend treatment within 1- 2 weeks, so prompt response is paramount.

    To put the risk in perspective, this treatment is now widely given both in UK and worldwide. Some people need multiple injections, and many thousands of treatments have been given in UK since Lucentis became available here in 2008.

    There is a website that has results of (mostly) US studies and research into risks .

    This particular American RETROSPECTIVE study (which means looking backwards into effects) and comparing difference of stroke and AMI (aka heart attack) occurrences in people receiving the injections (since available in 2006 in US) with those who were unable to have the injections (before availability 2000 -2006)

    sciencedirect.com/science/a...

    They reported last month and concluded

    “Introduction of anti-VEGF agents in 2006 for treating exudative AMD has not posed a threat of increased risk of AMI, stroke, or all-cause mortality.”

    Another US report can be viewed here

    ingentaconnect.com/content/...

    “Current data are insufficient to definitively conclude that intravitreal anti-VEGF agents are safe, although there is a trend toward an overall favorable systemic safety profile. Caution should be exerted in patients with a history of cardiovascular disease, as these patients may be at greater risk for nonocular serious adverse events.”

    Although there is risk, and the doctors have to raise awarenss of this, each person should be considered on an individual basis.

    The Macular Society has this Care Guide to wet AMD

    macularsociety.org/sites/de...

    which you may download, as well as any other leaflets you may find helpful.

    Our helpline is available from 9.00 - 17.00 Monday to Friday if you wish to discuss with someone, or if you want to register details so we can send information by post.

    Best wishes

    Helpline

    Macular Society

  • Thank so much for all this information. I shall get down to going through it. I really need to make a list of all the questions I have, so Mum and I leave no stone unturned. I do appreciate your taking the time to reply.

  • Hi Mel, I know it's a difficult decision for your mom but although I'm younger, I don't think anyone could have been more terrified of their first injection than I was. I've now had 9 injections altogether and I felt very worked up before the first few, but didn't feel panicky at all when I had the last one so you do get used to them. The staff are wonderful and if the treatment is a success for your mom she will be preserving her sight and her independence which I am sure are very important for an elderly lady living alone.

    I suspect your mom has endured many hardships during her life and that she is stronger and more resilient that you would realise; I know at 87 my mom had a strength and determination which put me to shame.

    I agree with other members of the community; the injections are far, far worse in our minds than they are in reality. My mom in law, and I suspect my own mom had wet AMD at a time when there was no treatment and I'm sure their latter years would have been so much better if their sight could have been preserved.

    Sending good wishes to you both x

  • Thanks so much for your message. And for saying the injections get less daunting with time. My Mum remembers walking over the rubble of London during the Second World War so, yes, you are right, she has great resilience. But it's strange how the tables are turned in life. Now it is more up to me to look after Mum now, rather than the other way round. I wish I was a bit closer to her (distance wise), but I do what I can. I think she should probably have the injections, but it will ultimately be her decision. Thanks again.

  • Hi

    My mum is 92

    She started having the injections about 2 years ago.

    She was worried at first, but she is so glad she has them, she is convinced this has saved her sight, or should I say stopped it getting worse. She has regular appointments, but has not had any injections for a few months now, as it is under control for the time being.

    Wish you and your mum, all the best.

    Junie

  • No problem and good luck to you both x

  • Wow. That's wonderful. What a blessing for your Mum. That gives me hope for my own Mum. Many thanks for your message.

  • No problem, wish my mum and yours lived closer, as my mum would have spoken to her about it.

    Let us know how your mum gets on.

    Best wishes

    Junie

  • Mum has had her date for the op. It's next week. I shall go with her and then stay at her home until the next day. I'm a bit concerned about how she'll manage to put drops in her eyes without help. I suppose there will be some to administer after the procedure?

  • Have pm'd you

  • Junie2 I think the MS comments and references put the matter in perspective. Over the last year I have also read extracts of papers which indicated that the risk of heart attack etc arising from the use of Lucentis/Avastin is v low.

    I am 77 and over the last 6yrs have had 59 shots, I know of a woman older than me who has had 119.

    In medical terms and in their usage in this manner these drugs are newcomers and at their inroduction all the extreme potential conditions had to be declared but experience and usage is putting their implications more in perspective..

    I suffer from a condition different from AMD and the potential side effect warnings of other treatments for me have been myriad. On one the disclaimer form had the note "Danger of Death"!! I am still here. . .

  • Hi

    Very interesting reading

    Thanks

    Junie

  • For anybody who might be interested, my mother has her first injection for wet amd on Monday (28th). I feel very nervous about it, but I think it has to be done. I'll let you know how we get as it might help others.

  • This is an update on my Mum's treatment....it might be of help to others. The first injection of Lucentis was given on Monday. Mum said it was not as bad as she had feared, although she had felt very nervous and apprehensive beforehand.

    I have to say, the biggest problem has been the drops needed after the procedure. How does any elderly person, with weak hands, slightly limited mobility and bad eyesight, get drops out of a hard little bottle into exactly the right place in their eye? I'm sure Mum is not the first elderly person to have ever faced this problem. I wonder why, in this age of technology, something hasn't been invented something to deal with this problem? Some weeks ago, my husband had a cataract op on the NHS but in a private hospital. The bottle his drops were in was much more pliable. I think I will have to mention the problem when Mum goes in for her next injection.

  • Hi cluttermonster, glad to see your mum is getting her inj.

    're the drops, if they are a medication I wonder if her local gp practice has a nurse who could do it for her?

    Or they might be able to prescribe single use bottles which tend to be softer.

    If they are just the dry eye type moisturizing drops then it's not so critical placement, I often have 2 or 3 goes before I feel it ! There is a type i like called hylotears which is a chunky bottle and you just depress the base so no squeezing.

    Best wishes to you and your mum x

  • Hi cluttermonster

    Tell your mum that my mum says well done to her. My mum had problems with the drops, the bottles are hard, tell the eye nurse, they should send a nurse from your GP surgery or they may suggest another way to get the drops in.

    Proud of her,

    take care

    Junie

  • Thanks so much for your support Junie. Next injection is this Monday. We are a little concerned because it has been 2 months since her first injection, not 1. I think Christmas was the reason for this. I just hope it hasn't rendered the first injection useless, due to the time lapse between the two.

    I will let you know how we get on.

    Happy New Year!

    Mel

  • Hi, I think the 4 weeks is more the minimum time between inj ie critical not to be given less than 4 weeks apart (as I read the wording on the drug manufacturers website). The initial loading dose is 3inj but it doesn't say within 8 weeks so I wouldn't worry too much.

    Best of luck going forward.x

  • Hi Cluttermonster

    Mum sometimes went a month or sometimes 2 or 3 months between injections,

    I am sure the eye clinic is taking good care of her eyesight.

    Happy new year to you both

    Keep in touch

    Junie

  • Thanks Junie. That's reassuring. Best Wishes, Mel.

  • Hello Dear People

    Mum has had her third injection this morning and the eye has become very painful. She didn't experience this sort of pain switch the other injections, but I guess she got off lightly before.

    My question is, can she take pain killers to ease the discomfort this afternoon? Have tried the helpline at the hospital but it is currently on answer phone.

    Thanks in advance.

    Mel

  • Hi, I've just come across your query (my advice is to start a new post rather than continue your original one so that people will see it straight away).

    So this is way too late now but yes your mum can take painkillers anytime. I actually take 2 paracetamol about an hour before my inj too).

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