diabetic macular oedema or problems with blood flow to the eye

[Koalajane]

I went for my eye clinic appointment today and the doctor there said that I may not have diabetic macular oedema but a problem with the flow of blood to my eye. I am to have a fluorescein angiography to see if it is thst. An interesting appointment and I hope they can find an answer.

[DorsetLady PMRGCAuk volunteer]

Hope so too…and please let us know.

[Koalajane in reply to DorsetLady]

I will do, we are off to Australia a week today for 3 weeks so don’t imagine it will be done before then

[DorsetLady PMRGCAuk volunteer in reply to Koalajane]

No, and you probably wouldn’t want it done before either…just put it on back burner and enjoy time away….

[Koalajane in reply to DorsetLady]

Thanks. I did find it an interesting appointment because I have been told in the past thot I don’t control my blood sugars while she was saying she thought it could possibly be due to something else as y sugars are well controlled!

I have had fluorescein angiography before so not at all concerned about it and she told me if it was blood flow problems it would be laser treatment which I would be okay with

[Blearyeyed in reply to Koalajane]

Have they mentioned whether you need to take care flying , especially as you will be on a long haul flight?I suppose it would actually be handier to know what it is before going on holiday, just in case you need to take any extra precautions to protect your eyes depending on what is effecting the blood flow.

Let us know when you get the results and have a lovely holiday. Bee

[Koalajane in reply to Blearyeyed]

No she knows I am flying to Australia and did not say anything so I am not concerned. I don’t know what precautions I could take!

[PMRpro Ambassador]

Interesting - and hopefully preferable!

[Koalajane in reply to PMRpro]

As long as they treat it I will be happy.

If it isn’t diabetic macular oedema I will be glad because, apart from this doctor I get told it is due to my poor control of diabetes. This really annoys me because I have done all I can to keep it in remission. I even miss lunch because that is when I get sugar spikes from the steroids

[PMRpro Ambassador in reply to Koalajane]

I would have said you have well controlled diabetes from what you have said in the past. But they shouldn't be playing the blame game without being sure of their facts ...

[Koalajane in reply to PMRpro]

They shouldn’t and my diabetic nurse told me to tell them that I can do no more, my bp is fine, my blood sugars are out of diabetic range and I don’t think I can put on here what else I should say!

[PMRpro Ambassador in reply to Koalajane]

I can imagine!!!

[SheffieldJane]

I hope so Koalajane! 🍀

[Bennijax]

What have been and are the eye and vision symptoms, Koalajane?

[Koalajane in reply to Bennijax]

Symptoms are slight blurriness in the eye and inflammation of the eye. It has been treated for over 3 years as diabetic macular oedema but due to the fact that the other eye has improved so much and that my diabetes is well controlled, in remission for over 5 years they think it may be ischemia. So having a test for that at some stage, which is a fluorescein angiogram.

We will see and treatment can be laser or similar treatment to macular oedema.

[Bennijax]

Thank you

[karegodd]

I have a question. Did you have loss of ocular fields with this potential ischemia and is fluorescein angiography the gold standard to diagnose it? Also if it is due to ischemia what is the treatment? I have ocular field loss and they’ve ruled out gca amongst other things with ct and orbital mri but they haven’t been able to say why the loss of vision, so I find your experience very interesting. I appreciate any insight you might have. 🙏

[Koalajane]

I have very little. As I say I am being treated for macular oedema and this suggestion was made by a young eye doctor yesterday who checked with the consultant who agreed it was a possibility and to arrange for a fluorescein angiogram. I told her I had had one before and she said they will be looking at other things. She mentioned laser treatment to which I said I have had that and her reply was that there are different types. I don’t suppose I will know until after the angiogram if that shows anything. I will keep you informed but don’t suppose I will get angiogram until November now with being away

[Nippersmum]

In February 2017 the severe symptoms of classic PMR hit me early one morning without warning. After various trials with different medication, which had no effect at all on the pain, I was finally referred to a rheumatologist. 2 days before that appt I suddenly started to have a lot of distortion in my left eye (like looking through a doilly) on top of which I could also see what looked like a cat’s tail waving from left to right. Bizarre!

I saw the rheumatologist who diagnosed PMR and put me on pred. The next day I saw the ophthalmologist who identified macular odeama. She was amazed when I said I wasn’t diabetic and so was the consultant I saw the next day. They both then blamed the pred but I hadn’t even started taking it when the distortion started. So was it the PMR? No-one knows.

Since then I have had regular check ups, flourescein angiograms, 2 PET scans, 2 lots of laser treatment, cataract op and countless injections (the lasering had no benefit at all, the injections stopped the hemorrhaging for a while but the leaking never completely healed).

Initially the injections were Ozurdex but after a significant increase in pressure earlier this year they have tried 4 injections of Eylea, the first 3 one month apart, the 4th one 6 weeks later and next week, again 6 weeks later, I will have another one. I have noticed an improvement and am now actually using both eyes to read which I couldn’t before and I feel much more balanced when walking and driving. If the results this time are good I’m really hoping my poor eye and I can both have a well-deserved rest!

As to the PMR, I was stuck on 8mg for the last couple of years and had a horrendous flare up this spring. I followed sick day rules and after a couple of weeks got back down to 8mg. The rheumatologist insisted I must reduce my ‘dependency’ on pred but is happy for me to do this at my own pace as long as I eventually get down to her target of 5 mg!

I’m doing ok at the moment on 6.5mg but as my husband has now been diagnosed with CPOD and I’m caring for him alongside all the other stuff I’m dreading another flare…..

I am resting when I get the chance and getting help in when I need it so fingers crossed for my poor eye next week and that the PMR is taking a break too.

[Koalajane in reply to Nippersmum]

I was offered Ozurdex but wasn’t sure as I was worried about it being visible to me and I had another implant. I have been on Eylea for a while now. Waiting to see if they find anything in the angiogram, whenever I get it.

[Nippersmum in reply to Koalajane]

Hope you can enjoy your holiday first. Hopefully the angiogram will be reassuring.

[Koalajane in reply to Nippersmum]

Thank you very much

[PMRpro Ambassador in reply to Nippersmum]

"insisted I must reduce my ‘dependency’ on pred"

YOUR dependency or the PMR requirement for pred? There really is a lot of difference and they, of all people, should understand that. And now with all that stress and at that dose, the adrenal requirement plays an even greater role. As I well know.

[Koalajane in reply to Nippersmum]

Hi, my angiogram showed no ischaemia so a choice of 4 weekly injections or Ozurdex implant. Just wondered how you found them and did the implant stay in your field if vision

[Nippersmum in reply to Koalajane]

Hi. Good news about the angiogram.

I called the Ozurdex implant ‘my fish’ as it would regularly swim around in my field of vision. Sometimes it was annoying but I did get used to it. Sometimes the fish was there for 4 weeks, other times up to 8.

I’ve had a long course of Eylea injections now and the retina has healed with no edema.

[Koalajane in reply to Nippersmum]

Was the injection, being a larger needle, uncomfortable.

My left eye has seemingly cleared as they are happy with that and no treatment for well ve4 a year

[Nippersmum in reply to Koalajane]

Perhaps just a little more pressure and a tiny ‘clunk’ when the released the baton.

[Koalajane in reply to Nippersmum]

Thanks

[Nippersmum]

Totally agree Pro! ‘She’ has actually been very good with me over the years but actually got quite cross that I’d upped the pred to get over the flare and wouldn’t look at the pain chart I took with me during the build up to it. I was disheartened but at the end of the session she did say not to worry and that “we’ would work it out.

She was back on my side in June and I’m having monthly blood tests (no inflammation) and see her again in November.

[PMRpro Ambassador in reply to Nippersmum]

And what were you supposed to do about a flare? She'd have had you back at a much higher dose.

[Nippersmum in reply to PMRpro]

If I do flare I’ll go my own way.

[Nippersmum]

Forgot to say that she did also send me for a complete abdominal scans which was clear of anything nasty

[Hunter134]

Good luck with the cause.Always scary when it comes to our eyes .I do hope they can help you!

[Koalajane in reply to Hunter134]

I have already had a lot of treatment for my eye, regular injections and 2 cataract ops, one of which went wrong and a small fragment of cataract fell behind my eye meaning they couldn’t put the new lens in but sorted it with another op a week later. I have reasonable vision in the eye they are talking about but none of the opthamologists seem concerned, saying the fluorescein angiogram is not urgent so I can stay calm about it.

Thanks for the good wishes

[autumnlass]

By now you are on holiday KJ and hopefully it’s fab for you. Lots of sunshine and rest, 🥰

[Koalajane in reply to autumnlass]

Yes, lots of sunshine, not a lot of rest but thoroughly enjoying it, especially the trip to this Hunter Valley for wine tastng!

Off to see the lifeguards at Bondi soon.

[Koalajane]

just to let you know that the angiogram did not show any signs of ischaemia which I am told is good news. Next treatment is a steroid implant (Ozurdex)