diabetic macular oedema and prednisolone - PMRGCAuk

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diabetic macular oedema and prednisolone

Koalajane profile image
54 Replies

I have been to the eye clinic today. I am type 2 diabetic (in remission for 4 years) and have diabetic macular oedema.

I have had PMR for 5 years and down to 7mg of prednisolone.

My opthamologist said my diabetes is not helping my eyes and I told her that I control it well but the prednisolone does tend to spike my sugars. I have to speak to my doctor about perhaps coming off the pred or I would think taking a DMARD to help the taper.

Any thoughts please

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Koalajane profile image
Koalajane
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PMRpro profile image
PMRproAmbassador

I know you have heard me say it enough - a DMARD doesn't guarantee getting you off pred. And no pred will mean a return of the PMR symptoms if it is still active. If they can swing it, getting tocilizumab is your best chance.

Though if your Type 2 is in remission - how are they blaming that? Has anyone suggested metformin to control the spikes?

Koalajane profile image
Koalajane in reply toPMRpro

I was on gliclazide and they were worried I was going too low!Never discussed using metformin so not sure if it would work to stop the spikes. I know when I spike so don’t eat food whilst it is spiking

piglette profile image
piglette in reply toKoalajane

Gliclazide and Metformin work in different ways, Metformin reduces the amount of glucose produced in the liver, and also makes muscle tissue absorb more glucose; gliclazide increases the amount of insulin produced by the pancreas. Several people on this board have diabetes and need to balance the glucose.

Koalajane profile image
Koalajane in reply topiglette

Thank you. I haven’t been on gliclazide for over 4 years. I note that my prednisone spikes my sugars but only to the amount that a lunch would so I don’t eat lunch. Not sure what can be done. Trying to get it clear in my mind before asking to speak to a doctor

piglette profile image
piglette in reply toKoalajane

If you are having problems you should talk to your doctor. Do you have regular diabetic checks with a nurse?

Koalajane profile image
Koalajane in reply topiglette

Yes. I have them still even though my hba1c is 37. Will talk to a doctor as soon as I can. I was trying to get it clear in my mind today about what I am going to say

piglette profile image
piglette in reply toKoalajane

So you are saying your diabetes is in remission? Which means you don’t need metformin. I am not sure your ophthalmologist could have understood you were in diabetic remission. They could have been saying that the steroids don’t help your eyes? See what your doctor says.

PMRpro profile image
PMRproAmbassador in reply topiglette

That's what I was wondering ...

Koalajane profile image
Koalajane in reply toPMRpro

I think that she was saying that the steroids are spiking my sugars so perhaps I could speak to my doctor about coming off them. The opthamologist I saw at my previous appointment implied he didn’t believe I was in remission so was going to write to my doctor. I have heard nothing from my doctor and this opthamologist said I should contact him about it. I said I am very strict with what I eat and always walk to keep my sugars down and the only thing I could think of was that the steroids were spiking my sugars. Checking my sugars today when I know they spike from the pred it was 7.6 which it would have been had I had had lunch. I don’t eat at all during the time it spikes so I don’t know what else to do. I will ring the doctor tomorrow and see if I can have an appointment be it a phone one or face to face. If I need help with tapering I assume I will need to see a rheumatologist so don’t know how long that will take.

Koalajane profile image
Koalajane in reply topiglette

Yes my diabetes is in remission.I believe todays opthamologist felt thecsteroids were not helping my oedema. I never see the same opthamologist and the last one did not seem to believe me when I said I was in remission and said he was going to contact my doctor about it. The opthamologist today said I should contact my doctor about the steroids. I don’t think my GP will know enough about it.

piglette profile image
piglette in reply toKoalajane

I am not sure that many people go into remission. How did you do it? They do say that those having bariatric surgery often go into remission, but that is pretty drastic.

Koalajane profile image
Koalajane in reply topiglette

I went on the low carb high fat diet and upped my walking. Yes bariatric surgery is a drastic step. I lost about 3 stone in weight

piglette profile image
piglette in reply toKoalajane

That is incredible, did you lose a lot of weight?

PMRpro profile image
PMRproAmbassador in reply topiglette

There are quite a few cases of remission using the Newcastle diet - studies about it too.

Koalajane profile image
Koalajane in reply toPMRpro

I think more type 2 diabetics are able to get into remission. It does take a change of diet but it is obviously possible

PMRpro profile image
PMRproAmbassador in reply toKoalajane

I think it depends on how insulin-resistant they have become as opposed to just not enough insulin available for the job in hand,

piglette profile image
piglette in reply toPMRpro

I had read about the Newcastle diet, but did not know if it were a flash in the pan. There have been people who are very sceptical as people were saying that people got rid of diabetes, which is not quite true.

Koalajane profile image
Koalajane in reply topiglette

No it is in remission not got rid of which is why I still get my checks

PMRpro profile image
PMRproAmbassador in reply topiglette

Even the NHS is adopting it - GPs can prescribe the shakes. They did quite a decent trial in Glasgow and Newcastle I think

piglette profile image
piglette in reply toPMRpro

I have seen the shakes around, I think Michael Moseley supplies them too. I remember at university I decided to go on some shake diet which lasted two weeks. I religiously followed it and weighed myself two weeks later and discovered I had lost half a pound!

PMRpro profile image
PMRproAmbassador in reply topiglette

And gave up? John Yudkin had a graphic in his book about low carb dieting in the 60s/70s - showing 3 weight loss patterns over a couple of month. Some lost weight all at the start and plateaued, some lost nothing at first and it all fell off in the last couple of weeks and some just lost steadily over the whole period.

Koalajane profile image
Koalajane in reply toPMRpro

I lost weight at the start, dropped from 12 stone plus to 8 stone 12 and it has stayed like that maybe gone up a lb or 2 then come back down

PMRpro profile image
PMRproAmbassador in reply toKoalajane

I need to get my head sorted out ... Despite being so small, under 9 stone is too little for me - you could hang your coat on my hip bones! But a stone or so would be perfect!

piglette profile image
piglette in reply toPMRpro

I must admit, I do like the idea of a healthy sustainable diet which you can cope with for life. I know people who would lose ten pounds in a week so they could go to a special occasion. Then put it all on afterwards. One particular friend would stop the Sundowners to lose instant weight. Then back on them after the party!

PMRpro profile image
PMRproAmbassador in reply topiglette

I don't think I have gained any since OH died though my diet hasn't been as low carb as it was before - have periods where I can't be bothered and eat easy or really fancy something I didn't ought to eat. But not eating an awful lot really. Worst has been since the achilles tendons have been playing up as I can't go far without it all getting worse. And can't use the bike he had because that makes the bursitis far worse. Really fed up with that.

Koalajane profile image
Koalajane in reply toPMRpro

I can’t walk as far as I used to due to the pain from sciatica. Life can be complicated. I am sure you lost weight looking after your husband and then you probably didn’t feel like eating much after. I hope your Achilles’ tendons and the bursitis improves soon

PMRpro profile image
PMRproAmbassador in reply toKoalajane

I didn't actually - you'd have though I would but no such luck! Mind you - he lost it for me, wasn't much above 40kg by the time he died.

piglette profile image
piglette in reply toPMRpro

I tend to plan my meals out so I can buy food on-line, which does seem to stop those little extras when you are out shopping. How rotten to have achilles tendon problems, that is really painful and not using the bike really limits you.

PMRpro profile image
PMRproAmbassador in reply topiglette

No - I'm pretty good at not getting little extras - and even a croissant is cut into 4 and frozen so I don't go mad! If I go late enough the campsite tourists have cleared the out! No online shopping here - at least, not that isn't specialist food or nearly twice the price! I have more salad and veg in my fridge than most families!

piglette profile image
piglette in reply toPMRpro

I started on-line shopping during lockdown. Most of the supermarkets in UK deliver which I find really useful. I even get my fish from Cornwall now.

PMRpro profile image
PMRproAmbassador in reply topiglette

I think most people did but as I say, not an option here. OTOH - a mere 300m to the village shops and they have pretty much everything I use. I go to one supermarket in town - very good butcher (the one in the village is good too) and my favourite rose wine. The Big Spar supermarket on the edge of the village has amazing fresh produce, sold loose.

piglette profile image
piglette in reply toPMRpro

Sounds a bit better than my village!

PMRpro profile image
PMRproAmbassador in reply topiglette

Supermarket, PO, bank x2, baker, butcher, (and a shop selling candles), pharmacy, doctors x2 though mine is in another village, 2 clothes shops, 3x restaurants, orthopaedic shoe shop, string instrument workshop, couple of bars. All within 500m of my place - that's to the pharmacy which is the other end of the village everything else is much closer. train to the hospital, buses.

piglette profile image
piglette in reply toPMRpro

We just have lots of pubs and restaurants!

PMRpro profile image
PMRproAmbassador in reply topiglette

Drunken lot!!!!! Have any closed? Apparently loads in the UK are.

piglette profile image
piglette in reply toPMRpro

Over the years yes, but I still think we have the highest number of drinking holes per capita in UK!

PMRpro profile image
PMRproAmbassador in reply topiglette

Hedonists!

piglette profile image
piglette in reply toPMRpro

But happy hedonists!

PMRpro profile image
PMRproAmbassador in reply topiglette

Always a plus ;) Maybe I should visit ...

piglette profile image
piglette in reply toPMRpro

A village born in heaven!

PMRpro profile image
PMRproAmbassador in reply topiglette

With mountain views and a river :) Not to mention not bad weather ...

piglette profile image
piglette in reply toPMRpro

☀️☀️☀️

Koalajane profile image
Koalajane in reply topiglette

I do find eating salads quite easy so I feel I am lucky in that respect

piglette profile image
piglette in reply toKoalajane

I love salads, I try and grow the odd herb and things like courgettes in the garden. I also buy my veg from a local farm that delivers.

Koalajane profile image
Koalajane

I must admit to wondering how to put on a bit of weight. Should I eat more carbs or walk less than my 10,000 steps per day. I gave up wondering about it as I know I need to keep the carbs down and exercise to keep the type 2 at bay!

PMRpro profile image
PMRproAmbassador in reply toKoalajane

I'm up for donating a fat transplant ...

Maybe just lots of non-carb calories?

Koalajane profile image
Koalajane in reply toPMRpro

Will have to think about that one

HeronNS profile image
HeronNS in reply toPMRpro

That is so hard to eat enough of, she says, as she munches her way through yet another huge salad....

PMRpro profile image
PMRproAmbassador in reply toHeronNS

I was thinking of protein and fat sources rather than a mega salad, which by its very nature is relatively low in calories. I often look at my salads and wonder how I can eat all that volume!!!

HeronNS profile image
HeronNS in reply toPMRpro

I always have a few nuts with afternoon tea, usually almonds and Brazil nuts, raw and unsalted. Also I'm rather lavish with olive oil on salads, which also include some sort of cheese. In the olden days before I found I couldn't really digest beans any more we used to eat a lot of substantial soups packed with vegetables and a diverse variety of dried beans. Miss those days when I could eat anything!

PMRpro profile image
PMRproAmbassador in reply toHeronNS

I probably eat more than a few nuts - hazelnuts and almonds, never salted. I buy the baking 1kg bags! Don't like Brazils at all! I'm a bit Italian with my olive oil too. Haven't yet got anything I can't eat! Hope I never do.

Koalajane profile image
Koalajane in reply toHeronNS

I add nuts to my salad, cashews, almonds, walnuts and Brazil nuts

HeronNS profile image
HeronNS in reply toKoalajane

I should eat more walnuts but I really only like them freshly out of the shell and that seems like too much work. Supposed to be good for the brain (because they look like little brains?).

Koalajane profile image
Koalajane in reply toHeronNS

I am waiting for them to improve my brain function!

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