past my sell by date: yesterday I had an eye test... - PMRGCAuk

PMRGCAuk

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past my sell by date

AnniesRyder5 profile image
15 Replies

yesterday I had an eye test and the optician asked if I was “still !” using eye drops in my very dry eyes. He said I should do so hourly. I wasn’t aware I was supposed to but apparently they are so dry they account for the regular migraines I’ve been experiencing.

Then the usual questions regarding my prednisolone dosage. It’s a struggle to not feel guilty because I’m stuck on 4mg but even the orthopaedic consultant agreed it’s a good idea to help with my shoulder pain prior to a full replacement in a couple of months.

He made me feel like I’m self harming- that osteoporosis means more breaks etc etc.

So here I am feeling low anyway due to the drug and then have it rubbed in for not using more self control!

I do wonder though if there’s something else going on with my body - for example should I feel so tired while I’m on 4mg? My joints are so painful and my fingers are hurting and contorting more on a daily basis.

Someone queried if I could have lupus?

Your feedback will be most welcome.

🥴

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AnniesRyder5
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PMRpro profile image
PMRproAmbassador

"for not using more self control!"

Nothing to do with self-control and people who know nothing about PMR other than it can be a prequel to GCA should keep their mouths shut.

4mg pred is a common level to feel fatigue due to adrenal insufficiency.

And if your hands are sore and the fingers contorting, then your rheumy needs to do a bit of work ruling inflammatory arthritis out or in. Or you need a bit more pred for the PMR.

Why lupus? Nothing you have said there suggests lupus to me ...

AnniesRyder5 profile image
AnniesRyder5 in reply to PMRpro

Thank you - the rash which comes and goes from my cheeks , dry eyes , joint pain?

The last time I saw a rheumatologist she put me on an endocrinologist waiting list. Good idea though re blood test - not sure who to ask ? 🥴

PMRpro profile image
PMRproAmbassador in reply to AnniesRyder5

Has the rheumy done anything? Why endocrinology?

AnniesRyder5 profile image
AnniesRyder5 in reply to PMRpro

Maybe I’m not a bit cynical but perhaps my referral will languish on his:her books ad infinitum anyway

PMRpro profile image
PMRproAmbassador in reply to AnniesRyder5

I really think that a rheumy should make sure they are up to speed on secondary adrenal insufficiency! Not have to turn immediately to another specialist.

Stills profile image
Stills in reply to PMRpro

In this thread AnniesRyder5 mentions dry eyes as a cause of migraine. I’m having vestibular migraine issues with dipping BP and visual disturbance combined with vertigo on occasion. I do suffer from dry eyes as part of Stills, do you know of migraine related dry eye attacks?

PMRpro profile image
PMRproAmbassador in reply to Stills

I can't see how they can cause them - but I did find this:

"Dry eyes don't cause headaches or migraines, but there may be a connection between the conditions. Research suggests migraine attacks may be longer and more severe in people with dry eye syndrome than those without it."

verywellhealth.com/dry-eye-....

There definitely appears to be a link - that isn't the same as being the/a cause.

ncbi.nlm.nih.gov/pmc/articl...

AnniesRyder5 profile image
AnniesRyder5 in reply to PMRpro

Thanks for the research- I’ve no idea why the optician went to town on this - as if I were being reckless again - not dropping my pred dosage and not administering eye drops!

He advised I administer them hourly- seems excessive!

In a way I latched onto his blaming dry eyes for my quite regular ocular migraines because I’ve no idea why I get them so regularly

PMRpro profile image
PMRproAmbassador in reply to AnniesRyder5

Excessive? Don't know really - when you consider how often we blink which each time moistens the surface of the eye, is it if you are producing very little good tear fluid? Most drops are thin, the gels tend to cause blurriness so are better at night. And using screens of any sort tends to reduce our blink rate considerably in addition to poor quality tears.

However - there IS a link, just not quite the way the optician presented it.

AnniesRyder5 profile image
AnniesRyder5 in reply to PMRpro

Thanks again

Interestingly I am getting some grit out of my eyes each morning

PMRpro profile image
PMRproAmbassador in reply to AnniesRyder5

Hmm - if it worsens, it COULD be an infection, I would ask the GP. When mine started really badly the GP gave me antibiotic eye drops - they improved things amazingly in 3 or 4 days. The next time she sent me to the eye doctor - who said it wasn't infection, just dry eyes, Regular use of drops did work but it took a few months to get as good as the first time. So I think there was a BIT of infection.

AnniesRyder5 profile image
AnniesRyder5 in reply to PMRpro

Thank you and that sounds right

😊

Stills profile image
Stills in reply to PMRpro

Two interesting reads thank you although I’m saddened to realise migraine makes me a burden to society 😉 Thanks for taking the time to research that 😎

PMRpro profile image
PMRproAmbassador in reply to Stills

Anything that requires society to fund it in any way is called a burden!!!!! Even requiring a sick day off work ...

Stills profile image
Stills in reply to PMRpro

Ah, I see. I don’t feel so bad now I know that especially as in my job that ended with the pandemic I didn’t take one day off sick in ten years. 😉

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