Gritty eyes

[Keemo]

Hi I am trying to manage on a low dose of prednisolone but feeling so down with my husband's diagnosis of stage three lung cancer ,I just keep breaking down saw the doctor Monday been having tight chest pains for months had a ECG four weeks ago was okay ,he thinks it's due to stress put me on propranolol for panic attacks but decided they are not that often so decided to leave them off ,also given me sertraline to help with low moods so going to give them a try seeing him again in three weeks , but I've been suffering with really bad gritty eyes for last three weeks and I got myself so upset in the surgery I forgot to mention it to the doctor till I had left I've been using OTC drops but still carnt clear them up should I ring the doctor for a prescription or go to a pharmacy the drops I've been using I just picked up in a store ,I will be grateful for any advice this group is so helpful to me with my pmr ,take care everyone xx

[SheffieldJane]

I am so sorry that you are going through such a terrible time. No wonder your body is reacting.

On the eyes thing. I have had dry gritty eyes for a couple of years now, I am fairly sure it is autoimmune related, they are prone to Blepharitis type infection too. I have Thealoz Duo dry eyedrops on prescription and Blepharitis wipes to keep them clean and very occasionally anti biotic gel for the infections. I am very careful not to cross contaminate my eyes and tear the wipes in half. These measures keep it at bay, my eyes are clear, it is a chronic eyelid issue. I argued for the preservative free Thealoz duo eyedrops- they are expensive, but the most effective I have found. I rarely wear eye makeup these days, my eyelids are very sensitive.

Wishing you a more easeful time. 💖

[DorsetLady PMRGCAuk volunteer]

As suggested by SheffieldJane try either Theolaz Duo or Hycosan extra - both advised by optometrist and available OTC or online - preservative free, and not that expensive -

Eye drops

[Keemo in reply to DorsetLady]

Thank you I will get some today and give them a try xx

[DorsetLady PMRGCAuk volunteer in reply to Keemo]

Hope they help, but as PMRpro says why are you struggling on a low dose. Like her, I nursed my late hubby -and if you need more Pred to help you, you need more Pred. I was on a higher dose, and didn’t need to increase, but if it had, I would have taken it.

[PMRpro Ambassador in reply to DorsetLady]

Whereas I was also on a higher dose and STILL needed a bit more!

Is that first word hope?????

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Yes... in gobbledegook! or maybe a mixture of good and hope!

[Koalajane in reply to DorsetLady]

I use the Hycosan extra and I find them to be very good. I buy them from the A……place

[DorsetLady PMRGCAuk volunteer in reply to Koalajane]

Me too -previous optometrist recommended them -but different one seen in September) thought Thealoz better, so have bought them, but not used yet…finishing off Hycosan

[PMRpro Ambassador]

"I am trying to manage on a low dose of prednisolone "

Why? You don't say how low - but a low dose is almost certainly not enough to provide the adrenal replacement you need to deal with the stress you are under, Many of those of us here who have been through nursing our husbands found we needed more pred - I certainly did in order to be able to function, especially as it was during Covid and I live in Italy - the family are all in the UK so even visits by our daughters were off the cards and I had to do everything, The restrictions for NHS staff were lifted in time for them to book a flight here and he waited for them to arrive. They then extended their trip to nurse him - one is a nurse and the other works in the ED.

You probably need more pred - it is very likely your symptoms are those of adrenal insufficiency. I've just looked at your other post - 5mg is almost certainly not enough for what you are going through at present. Speak to your GP as soon as you can and discuss it with them. Panic attacks of this sort can be symptoms of a threatening adrenal crisis - and that may be what your breakdowns have been.

Show the following link to your GP, especially "The Doctor's View" about half way down the page.

addisonsdisease.org.uk/copi....

You can also get your eyes examined under the MECS scheme, They can advise you as to whether this is "just" dry eyes or whether you have blepharitis or even an infection and what is the best way to deal with it.

primaryeyecare.co.uk/servic...

[Keemo in reply to PMRpro]

Hi the doc I saw Monday was a new one to me and he never mentioned my polymalgia ,I did taper off to soon so put myself back on to 5 mgs first two weeks was still in quite a lot of pain seems to have settled down now the reason I didn't go to high was weight gain I've put about a stone and half on in last two years and my sugar his high doctor keeps saying I've got to get it down ,I've always had a sweet tooth but trying to keep a eye on it xx

[PMRpro Ambassador in reply to Keemo]

It is cutting carbs in general that is important when on pred - it may well have to be quite a dramatic cut, especially processed foods, added sugar and limiting fruit as they hide an awful lot of sugar. There is lots of info on the internet about low carb and how to have sweet things that are low carb so do have a look.

This is a good and reliable source of low carb info:

dietdoctor.com/low-carb/foods

Many people find that low carb also improves the PMR symptoms. And it not only helps with the weight gain - several people have reversed their almost-diabetes status and some their diabetes,

[Keemo in reply to PMRpro]

Thank you Ile look carbs up x

[Koalajane in reply to PMRpro]

I had my diabetic review today. Low carb really works for me as hba1c is now 36!

[PMRpro Ambassador in reply to Koalajane]

That's brilliant! Same as mine last time we looked - and I'm not diabetic! Proves it works though doesn't it?

[Koalajane in reply to PMRpro]

it really does. I was so pleased

[PMRpro Ambassador in reply to Koalajane]

Bet you were - what did the doc/nurse say? Hope they were impressed.

[Koalajane in reply to PMRpro]

she said that I was amazing and that she was sure I would be her best patient today(I was her first). She is lovely and seems to understand about the effect prednisolone has in our sugars and is all for the low carb high fat diet. My cholesterol was also very good so the right sort of fats do not harm!

[Keemo in reply to Koalajane]

So pleased for you that's a good result xx

[Koalajane]

so sorry to hear you are going through such a stressful time.

My optician checked to see how dry my eyes were and said moderate to high level of dryness. She recommended the Hycosan extra and they really help. My surgery does not prescribe eye drops so I pay for them and they are quite expensive but worth the money

[SheffieldJane in reply to Koalajane]

I wonder if I’d get them now? My optician recommended them and my GP grumbled a bit, but I got them - pre-pandemic though. They are about £8.99 a bottle, I go through 2 a month. ( Thealoz Duo).

[Koalajane in reply to SheffieldJane]

I think it is the local CQC? who stopped it here. You can’t get lots on prescription now that you could

[SheffieldJane in reply to Koalajane]

That figures. Oh dear!