Tired heavy eyes

[kathleen18]

Having thought I was improving very slowly do others suffer from very tired heavy eyes? I went to a painting class today after a gap of four weeks and my eyes were so very heavy afterwards. Disappointed as I had hoped I was past that. I reduced the steroids from 12.5 to 10 six days ago and am a bit achey at the moment. Should I persevere?

[PMRpro Ambassador]

Are your eyes dry? If you are working at something and aren't blinking as much even if they are only slightly dry it will be uncomfortable. You can get artificial tears from the chemist - and I used to use a liposomal spray called Clarymist which you spray on your closed eyes. Expensive but highly recommended by my optician (who really knows his stuff).

Having done it - give it a chance. If the achiness is steroid withdrawal it could take a week or two to fade. If it is a flare because you have overshot the mark for the moment it will get worse - in that case go back to 12.5mg and the next time just reduce 1mg at a time.

[kathleen18 in reply to PMRpro]

Thank you for the dry eyes tip, I hadn't thought of not blinking so much but it makes sense, and I do have some eye drops. I think the aches are due to steroid reduction, but I do so want to get off them so will give it a bit longer! It is such a help having the benefit of other people's experience as doctors don't seem to have much idea!

[PMRpro Ambassador in reply to kathleen18]

Kathleen - we ALL want to get off pred, do you think we LIKE taking it? But as long as the underlying cause of your symptoms is active you will need enough pred to manage the symptoms - or you accept going back to where you were pre pred. Take too little, even slightly too little and the dripping tap of autoimmune inflammation will fill up and spill over into symptoms. There is no virtue in taking too little - eventually it catches up with you.

[kathleen18 in reply to PMRpro]

OK , I see my doc tomorrow and will see what he says - if anything!

[kathleen18 in reply to PMRpro]

But what is the cause? That is the question!

[Rimmy in reply to kathleen18]

Hi Kathleen

I also get very 'heavy-lidded' at times and did so even before any PMR/GCA (that I knew of anyway). I think it was at times just reading/screen time eye strain but also possibly blood sugar levels low which I get from time to time (I am not diabetic) as an bit of immediate sugar always seemed to relieved it. May have nothing to do with what you are experiencing but many of us are eating low carbs and initially at least this could be a response - which should improve over time as your body adjusts and has less 'spikes' - I seem to be having less of this than I used to.

Best

Rimmy

[DorsetLady PMRGCAuk volunteer]

Hi,

For info - Clarymist is now rebranded as Eye Logic.

[PMRpro Ambassador in reply to DorsetLady]

Oh ta - other brands are available but it was by far the best I found.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Yes I think it was - strangely enough I knew someone who worked for Clarymist in Australia - she always said it was the best.

[PMRpro Ambassador in reply to DorsetLady]

She would though wouldn't she My optician swore by it...

[SheffieldJane]

My eye symptoms are amongst the most troublesome. It doesn't feel like dry eyes, more like swollen eyes with photophobia. I love reading and sometimes I just can't. I do have a velvet padded eye mask that heats up in the microwave and after having that on for 10 minutes, I gently massage my eyes. It seems to help but really the symptom comes at the end of the day and sleep is the best option boringly.😕

[Slosh in reply to SheffieldJane]

Have you had your thyroid checked?

[PMRpro Ambassador in reply to SheffieldJane]

That's what my eyes felt like for a while during unmanaged PMR - and that was when my optician, totally baffled, suggested the liposomal spray. It did help - not perfect, but much much better.

[SheffieldJane in reply to PMRpro]

Thanks PMRpro I will seek it out.

[SheffieldJane]

Hi Slosh, I was diagnosed with Graves Disease in 1984, at that time I had Thyrotoxicosis and exopthalmic goitre. My bloods are within the normal range these days. I have big eyes, thankfully no longer obviously protruding and too wide. This feels different, one of my lids seems thicker than the other ( only noticeable to me when applying eyeliner). I cannot look at a TV screen sometimes. I associate these symptoms with PMR or a Pred side effect.

I agree everyone should have their Thyroid levels checked it's easily sorted with Thyroxine which I' m on for life.

Thanks for thinking of it.

[Judigardener]

Hello

I saw my rheumy this week about my eyes and I have SICCA and Blepharitis. I may have Sjogren's syndrome. These things are auto immune too. And I have an underactive thyroid. I am now managing my eyes in this way: I bought some Bleparosol on line, but warm water with Bicarb is good too. I put lachry ointment in them at night before I go to sleep.You can get this off prescription. On waking I wash the lids with the Belpharosol and then put in false tears -- switching brands a bit so they don't get used to anything. I used the spray on lids stuff too but it only gave me temporary relief. I am better than I was at the beginning of the week. It is a perfect storm with high pollen levels, PMR, the eye conditions, and fatigue. Like an earlier comment I cannot read sometimes and going to bed and shutting my eyes is the only relief. Dark shades with maximum coverage also helps and turning down the air con and turning it away from me in the car, avoiding windy and very dry environments, and having a humidifier in my principal rooms.

[kathleen18 in reply to Judigardener]

Thank you all useful information!