Pre proliferative retinopathy

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maryhorn

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Hi all
Hope everyone is well
I’m new on here but wanted some advice on pre proliferative retinopathy please. My son has been diabetic for over 20 years now, diagnosed at 8. He is freaky out about his eyes as he has pre proliferative retinopathy.
Any tips advice on what he can do to help improve this. He lifts weights regularly and I’m wondering if this is not helping or actually doing more harm and his blood pressure is a tad high which I also know could be a factor. Has anyone had red light therapy? I was wondering if this would help. Or a session in an oxygen chamber. Any advice would be appreciated.

Thank you all in advance x
 
Well - not that I'm an expert of course, but surely THE most important thing is to keep his blood glucose as tightly controlled as he can possibly manage, and ditto his blood pressure, rather than try to control it with non mainstream this that or the other.

So how tightly controlled are either of those and what help are his diabetic and opthalmology teams at the hospital giving him?
 
trophywench said:
Well - not that I'm an expert of course, but surely THE most important thing is to keep his blood glucose as tightly controlled as he can possibly manage, and ditto his blood pressure, rather than try to control it with non mainstream this that or the other.

So how tightly controlled are either of those and what help are his diabetic and opthalmology teams at the hospital giving him?
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He has been told to go back in 6 months for another eye test. Watch and wait. His diabetes control is pretty good and was told he was in the top 10 percent in the country so can only think it must be blood pressure? Which sits around 140/85. His medical team are useless hadn’t seen anyone since Covid only to speak on phones - supposed to see them once a year and on his last visit his consultant left early so was seen by a nurse. We paid and went to see a private Dr who said his control was in the top ten percent but that was two years ago. He came away feeling pretty confident.

He is extremely worried about his eyes and it’s understandable. He’s had some stress issues - 14 month old baby and another on the way soon just want to try and help him.

Thank you very much for your reply
 
I would say see an ophthalmologist, privately if necessary. Your son is rationally concerned about risks of progression and in his situation I'd want advice from an expert (and certainly not alternative "experts").

I'm not sure what "pre proliferative" actually means but I would certainly want to avoid progressing to "proliferative".

FWIW, 140/85 seems high to me, particularly for somebody in his situation. Is he on any BP meds?
 
Eddy Edson said:
I would say see an ophthalmologist, privately if necessary. Your son is rationally concerned about risks of progression and in his situation I'd want advice from an expert (and certainly not alternative "experts").

I'm not sure what "pre proliferative" actually means but I would certainly want to avoid progressing to "proliferative".

FWIW, 140/85 seems high to me, particularly for somebody in his situation. Is he on any BP meds?
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No blood pressure tablets
I’m just wondering if it’s this that’s making the eye problem worse as his control is pretty good
 
Hi everyone
I’m new on here so bear with me till I get familiar with how this works ….,,
My son has been diabetic for just over 20 years diagnosed at the age of 8 on Christmas Day. For many years he dreaded Christmas as a child.
I’ve watched him trying his best with controlling his diabetes over the years and it’s heartbreaking. He’s absolutely terrified of losing his sight and at the moment has pre-proliferative retinopathy. He avoids any contact with forums or support groups as he doesn’t want to read negative things.
I’ve tried to get him to join in with the hope he can take some positive feedback and that he’s not alone but I’ve not managed it.
So thought I’d join and see if I can help him.
Appreciate any advice and very interested to hear other people’s thoughts, tips, advice etc

Thank you in advance
 
maryhorn said:
No blood pressure tablets
I’m just wondering if it’s this that’s making the eye problem worse as his control is pretty good
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Obviously I'm not qualified, but FWIW I think it's fair to say that elevated BP is a risk factor for retinopathy progression. But I doubt there would ever be one single cause. How long you've had diabetes for seems to be commonly cited as another risk factor, even if well-controlled. Overall, things are complex, which highlights the value of getting qualified, expert advice.

Anyway, IMO for health generally & not just retinopathy, BP >130/80 (or 120/80, really) is worth addressing, often requiring meds.
 
Eddy Edson said:
Obviously I'm not qualified, but FWIW I think it's fair to say that elevated BP is a risk factor for retinopathy progression. But I doubt there would ever be one single cause. How long you've had diabetes for seems to be commonly cited as another risk factor, even if well-controlled. Overall, things are complex, which highlights the value of getting qualified, expert advice.

Anyway, IMO for health generally & not just retinopathy, BP >130/80 (or 120/80, really) is worth addressing, often requiring meds.
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Thank you for this. Very helpful. I think he was worried about going onto blood pressure tablets as well but I think this will very likely be the case now.
 
Welcome to the forum.
This is outside my experience, but I'm sure someone will be along who can share their experiences and knowledge.

EDIT: hmm, odd .. when I typed this i had looked and there were no responses. I'm glad you've got some help 🙂
 
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Welcome to the forum @maryhorn

Sorry to hear about the stress and worry your son’s retinopathy is causing him.

My (unqualified) sense is that some of this is down to the luck of the draw, but there are things we can do to help ourselves / reduce risk. Duration of diabetes can be a factor, but there’s not a lot we can do about that! Blood glucose management can really help to reduce risks, and slow any possible progression, but again this can be hard to evaluate. Two people can have identical HbA1c, but very different glucose profiles ‘behind the numbers’. My understanding is that reducing glucose variation and glucose instability are more powerful than simply aiming for a ‘low’ HbA1c which can be built on wobbling from high to low and back again. Trying to keep BG as even and steady as possibly, with as few rapid rises and drops is a better target IMO.

Keeping an eye on this is much easier now that CGM is more accessible. And technologies like Hybrid Closed Loop can help smooth off some of the ragged edges.

Eye damage is happening in very fine blood vessels, which is why blood pressure is so important. Keeping blood pressure within recommended ranges can help take the pressure off (ha!) those very fine blood vessels.

Hope his condition stabilises. We have several members here whose eye health has stabilised, or even improved, after a brush or two with retinopathy. And several who have had successful outcomes from laser surgery.

Hope your son’s follow-up appointments offer reassurance.
 
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