PMR/GCA. eye problem

[Kerfufalmelodious]

I have been diagnosed with these two since April but my GPS didn’t seem to know much about the condition. Consequently I have had to contact Rheumatologist privately. He started me in 20mg then lowered it to 17.5 and now I’m on 15mg but seem to be getting more pain and constant tiredness but a problem that really worries me Is my failing eyesight. Is this being caused by the condition or should I consult my optician. My optician said my eyes were fine a couple of months ago. I’d really like to know if others are having this problem.

[DorsetLady PMRGCAuk volunteer]

If you have GCA then 20mg is not a high enough dose… 40mg is usually the lowest start dose. Any reason why such a low dose?

What do mean by failing eyesight? If can be caused by a few things - most serious is GCA itself obviously, but it could be a side effect of Pred, or the beginning of cataracts. So yes, please make an appointment with optician/optometrist-and asap.

But if you are getting increasing pain, then that needs to be addressed, so please also make an appointment with GP…

You may like to have a look at this as well -

healthunlocked.com/pmrgcauk...

[Kerfufalmelodious in reply to DorsetLady]

Thank you for that advice.

[PMRpro Ambassador]

GCA is beyond the competency of most GPs to manage and he should have got an emergency referral to a rheumatologist without you having to go private. If that was the rheumy who started you at 20mg - he doesn;t know much about GCA either, the basic starting dose for uncomplicated GCA, i,e, no visual symptoms or jaw pain, is 40mg.

If your pain is increasing, you need more pred - what SORT of pain? PMR pain or GCA-related pain. I would get back to the optician tomorrow and get another examination.

[Kerfufalmelodious in reply to PMRpro]

Thank you. It Is dry eyes but with sharp pain and bloodshot eyes and I have a problem keeping my eyes open at times. I will contact my optician again.

[PMRpro Ambassador in reply to Kerfufalmelodious]

Are you using eye drops? If not - you should be. I had similar symptoms last summer, felt as if I couldn't keep them open. I thought it was an infection, antibacterial drops from the GP had made a big difference but it came back last summer and she sent me to the eye clinic. They got quite iffy because I wasn't using eye drops - and since then, 2x daily without fail. No more scratchy feeling, no swelling and vision excellent. Sometimes drops wash out quickly - then use gel or thick drops at night. I also like the liposomal sprays you spray on closed eyes, they seem last through the day. But honestly - you won't believe the difference.

[Kerfufalmelodious in reply to PMRpro]

Thank you for that. It is my symptoms exactly. I use HYLO-FORTI several times a day . The NHS doesn't now prescribe treatment for dry eyes but I will see my optician and try to speak to a doctor for something stronger uf necessary.

[PMRpro Ambassador in reply to Kerfufalmelodious]

No, not here either, I'm not convinced "stronger" is the reason to choose something.. It needs to be the one that suits YOU.

[autumnlass in reply to Kerfufalmelodious]

I have dry eye syndrome and Eye Clinic NHS gave me a small amount of Viscogel units - a gel which I was told to use 6 times a day. All pharmacies sell the eye gel. Boots sell their generic equivalent at £2.50! Must be the cheapest thing they sell! It’s very good and preferable to the drops I think. HycoSAN plus is very good too, a lubricating eye drop and their dropper bottle method is fab isn’t it?