a blind mice

[ignatz]

Side effects of Prednisolone over & under-dosing.

Has anyone ever been given a percentage chance of developing cataracts? ..by a Rheumatologist? ....by an optician? ...by ???

Same for GCA.

I understand high dose Pred long term increases risk of cataracts.

I am uncertain if too little Pred can lead to GCA from PMR.

I understand high dose Pred long term increases risk of osteoporosis. Even after 20mg/d I was advised that I stood a 6% increased chance of a major fracture within 10 years- which does not seem excessive to me.

I remain uncertain if 10mg daily long term is high. I believe 1mg daily long term is considered very desirable by medical professionals.

[Hidden]

Morning, I think many of us are at risk of cataracts as we age whether on Pred or not. However, yes the risk obviously is higher when taking Pred. I'd sooner have cataracts removed than go blind from GCA. Some people never get GCA even though they have PMR...sadly it came on with me three months after being diagnosed in 2019 with PMR. Although, I think it may have been in the background all the time. Weird and different kind of headache, achy teeth, tender head and pain jaw. Recently had to increase Pred as little subtle symptoms started to show again. This time a tender right temple and tender head back....all settled down again once I increased the Pred. Some people get GCA and never have PMR.

Don't take any chances if you find you get symptoms of GCA. Hopefully you won't though.

Good luck

Anne

[DorsetLady PMRGCAuk volunteer]

THE DEFINITION OF CONVENTIONAL TERMS FOR GLUCOCORTICOID DOSES?Answer

We suggest the following terminology:

* Low dose ≤7.5 mg prednisone equivalent a day

* Medium dose >7.5 mg, but ≤30 mg prednisone equivalent a day

* High dose >30 mg, but ≤100 mg prednisone equivalent a day

* Very high dose >100 mg prednisone equivalent a day

* Pulse therapy ≥250 mg prednisone equivalent a day for one or a few days.

Not sure anyone can give you actual numbers re the risk of cataracts , osteoporosis nor the risk of PMR becoming GCA….none is a given.

All I would say is you need what Pred you need to get you through your illness- that’s a fact, the others are maybes….very often there isn’t a simple answer, much as you would like.

[ignatz in reply to DorsetLady]

Many thanks.

[Marcy47]

I started to develop cataracts years before taking Pred. At my last eye test I asked about it and was told they are very slow forming and are not a problem at the moment .

[PMRpro Ambassador]

After 10+ years of pred I had no sign of cataracts - due a session at Eyes soon for an update. I keep hoping ... . jinasc will tell you about using reactolites/transitions lenses - her optician put her on them as soonas GCA was diagnosed and her tiny cataracts then have never grown. I put mine down to always using sunglasses in bright light.

I think it is thought about 1 in 6 cases of PMR go on to turn into GCA - but whether that is entirely due to too little pred is another matter. Certainly there is said to be a higher risk in inadequately or unmanaged PMR

[nuigini]

I have cataracts forming, but they are not due to long term prednisone, just aging. Taking steroids can cause a cataract type doctors call posterior subcapsular cataracts. For some reason I was quite relieved when the eye doc told me this a few years ago.

[SnazzyD]

I have developed early cataracts after a year on high dose Pred in2018 . My optician said there is no telling who will get them and if they do how fast they will develop to a stage requiring intervention. Luckily cataract procedures are these days, ten a penny. Mine have not got worse since. As for bone fracture risk, nobody can tell your individual risk without your current bone density reading and even then it doesn’t give you the whole story.

[jinasc]

Not been around till today and just wanted to add:

Pred + Sunshine is a 'No no'.

My optician immediately changed my glasses to re-actolite rapide. Bridget had told me that I had the beginning of cataracts and pred would escalate growth with the help of sunshine.

An Optician whose Mother had PMR and joined the support group asked to be a speaker at a meeting. He then told the meeting exactly what I had been told. If you do not wear glasses then you need a good pair of sunglasses and wear them when out in the sun.

14 years later my cataracts have never grown - still wear re-actolite rapide.

So whether you have cataracts or not - you need to protect your eyes from the sun whilst taking pred. It can cause cataracts to come along or existing ones to grow.

[ignatz]

'My' Rheumatologist tells me I have zero signs of GCA. Yippppeee! Cataracts impossible to predict but I have booked an eye test as now prescribed hydroxychloroquine sulfate and have read the guidance sheet. Fingers crossed.

Many thanks to all for the comments and advice.