Preds and eyes!

[Kael-gca]

Not the best of weeks! After suffering the UTI which is still nagging my kidney it was time to visit the hospital Ophthalmologist.

I have been taking eye drops for five years to prevent Glaucoma as I have high pressure in the eyes, family history and unusual narrow passage in the left one. When I read preds can increase your chance of Glaucoma I asked my GP for a referral (despite the fact they are supposed to see me every year anyway!).

After various scans, tests and funny contact lenses I was informed that the pressures are very high due to the preds. I have additional eye drops to take twice a day, so now juggling three applications into my busy drugs schedule.

When I asked if the pressures would reduce when I came off the preds, the response was "I expect so but you will be on preds for months". I thought, I know that but thanks for being cheery! I was a bit down at that point.

That's a step back I think.

[scats]

I'm so sorry you are having problems. I had no trouble with my eyes until PMR/pred. Within months I had cateracts and at times focusing seems an optional extra, especially when I'm tired. I'm sure you will find others have the same problem as you.

The added extras with PMR do tend to get you down. You think you know what to expect, then it bowls you a googly!

[jinasc in reply to scats]

Scats

I jope your optician, if you wear glasses, told you to get Re-actolite Rapide lens, sunlight and pred cause cataracts to grow.

My opticican, all those 12 years ago immediately changed my specs and I had the beginning of cataracts, so 5 years with GCA and then remission - those cataracts have never grown.

At a support group meeting, an Opthamologist whose Mother had developed PMR and she joined the group, came as a guest speaker and re-iterated what I had been told. He also said, wear sunglasses even in the dullest sun when on pred and with cataracts.

[Kael-gca in reply to jinasc]

Sunglasses wasn't mentioned so this is very useful advice. My optician told me I had the very early stages of a cataract at my last visit but I should not be too concerned at this stage. The Ophthalmologist did not mention it and I forgot to ask him. I will get my sunglasses out.

[scats in reply to jinasc]

I was impressed with my optician, she had heard about PMR, the previous one had looked blank! However she did not give me this advice. I have a cataract growing my other eye now so I will take your advice. Thankyou.

[prunus in reply to jinasc]

I've just found what you have written very interesting. Noone told me anything at the time. Neither has anyone told me to wear sunglasses while on predisolone. Thank you for that valuable information. It means a lot to me.

[jinasc in reply to prunus]

Prunus 11 years ago I knew little or nothing, except my Mother had both PMR & GCA. 21 years down the line, little or nothing had changed. So decision time, it worked. Kate posted on Patient.info, looking for others who wanted to do something, 4 of us responded, they travelled up to where I live (I was in a wheelchair at the time). 4 months later those 4 pushed me around London and lo and behold a national charity came into being.

So, yes I have gained knowledge, knowledge is power and it also means you can pass it on. As long as you remember this important item. We are all different and it is up to you to make up your own mind always.

This forum is to ensure that no-one diagnosed with PMR and/or GCA is alone, seek and ye shall find. This forum ensures that those who cannot get to a 'real' support group meeting, can at least attend a virtual one.

So I only knew about the sun and pred because the optician at Spec Savers, trained at Belfast. Bridget knew more and how to spot GCA as do all good Ophthalmologists - one step up from an Optician. ....................I am led to believe, but an unsure.

[prunus in reply to jinasc]

I could not agree more with you when you say "knowledge is power". Can I give you a little back? As I understand from reading about them there are three levels of eye

people : Opticians at the bottom then Optometrists then Ophthamologists. I have always been very interested in eyes. I was nine when I had to start wearing glasses. They were tortoise shell and hooked round the ears. The other children made fun of me because noone else wore them in those days. Can you imagine it now? My optometrist is good but he has brown eyes and does not understand how sensitive

blue ones are. I think mine was unfamiliar with GCA until he met me. I have photocopied a lot of reading put out by pmrgcauk for him to read. (I wonder if he will?)

[prunus in reply to jinasc]

Never heard of these Re-actolite Rapide lens - have you any more you tell about them?

[PMRpro Ambassador in reply to prunus]

There are various makes of lenses I think - but they react to bright light and darken, lilghtening again when the light level falls. The effect is normal and sunglasses in one pair so it happens as required without changing over.

This is a good article from one manufacturer explaining them

zeiss.com/vision-care/int/b...

Often the likes of Specsavers and Vision Express offer "free" photochromic lenses (the other word for them) but they are almost always older, no longer state of the art, left-overs. You need ones that change quickly or they are more pest than use!

[prunus in reply to PMRpro]

Thanks for that will look it up. My elder son wears photochromic lenses and would not be parted from them. I did wonder if it was the same by another name. My "problem" at the moment is, after a lifetime of wearing glasses, I'm enjoying the freedom of only wearing them to read. I've bought two pairs of polaroid wrap rounds, but can these be improved on. I always used to wear polaroid clip ons but times change and I don't always manage to keep up.

[PMRpro Ambassador in reply to prunus]

Then no problem - nice sunglasses on at every opportunity when you go out!!

[prunus in reply to PMRpro]

Yes but it is remembering, and the problem can come when I need to read something.

[Kael-gca in reply to scats]

Thanks for replying Scats. I'm hoping Rashid bowls some good googlies later today and you get the reference

[Soraya_PMR]

Don’t think of it as a step back. You’ve been proactive, identified a risk and sought appropriate advice and treatment. A step sideways maybe? But your actions have prevented extra pain and complications. So gird your loins! Onwards and upwards (or downwards with the pred!)

I was told I had the start of cataracts within months of starting pred, and had new specs every 6 months at the start as my focus was heading downhill at a rate of knots. I now have reading and distance reactolight glasses which for me is an absolute pain. Can’t get on with varifocals, my brain kept threatening to chuck me down the stairs! I’ll worry about the cataracts when I have to. For now I’m grateful I can read and drive.

Hope you get on top of your UTI quickly.

[PMRpro Ambassador]

At least they were realistic about things!

Hopefully the new drops will help - I understand there are other possibilities to manage pressures if they don't. One of them can be done when cataract surgery is carried out - so cataracts are not always bad! And the cataract your optician saw may be small now but if your sight does get worse quickly do get it looked at as sometimes the pred does speed up the process to months. The earlier you get on the list the better!

I live in northern Italy in the mountains, lots of sun in the winter too, and I rarely go out without sunglasses - after 9 years of pred there is no sign of cataracts.

[DorsetLady PMRGCAuk volunteer]

Hi,

Yes you will be on Pred for months - that’s a fact - and well done Ophthalmologist for stating that. They seem to have a more realistic attitude than Rheumies in that regard. Mine told me I’d be on steroids for at least 2 years, probably a lot longer and maybe for life! Actually it turned out to be 4 and half years.

Unfortunately Pred can increase the pressure levels in eyes, and also increase the likelihood of cataracts. But the Pred induced pressure levels should receded as you taper.

As the others have advised take as many precautions as you can - and hope for the best outcome. It’s all we can do in life!

[SheffieldJane]

I am glad they caught this thanks to your vigilance. I hate these blows and people who lack empathy do not help.

[Reeceregan]

I have been on pred for PMR and GCA for nearly 2 years now, and have glaucoma and cataracts both eyes. My glaucoma was discovered when they did the temporal biopsy for GCA and as the pressure was quite high I was prescribed drops daily. They have worked, but the cataracts have become worse and next week I have them removed from one eye, with the other eye’s cataracts to be removed two weeks later. At the same time he will insert a stent in each eye, which apparently reduces the glaucoma pressure so that I do not have to use drops for the rest of my life. I have never heard of this, nor have I been able to find anyone who has had it done, but I trust my surgeon and he assures me it’s a piece of cake and works well. He is the head Opthomologist at our large research hospital and has trained and lectured all over the world so I’m banking on him. I’m 64 and reading is my hobby so he better get it right.

[Jackoh in reply to Reeceregan]

Sounds like you’re in good hands.

[PMRpro Ambassador in reply to Reeceregan]

That's what I mention in my reply - as far as I know it can only be done during cataract-type surgery though I think if there are problems with managing pressures they do it even if there are no cataracts to remove.

[clieder in reply to PMRpro]

In the US, Medicare will only pay for it if the pump is installed during cataract surgery. I had it done with second eye. Have had ocular hypertension for 40 years (father too) and have been watched for glaucoma over the years. Started on eye drops about five years ago. The drops work fine to keep the pressure down and my opthalmologist is PMR, GCA and prednisone savvy. He thought the pump was a good idea. Worst case, it would do no good, but do no harm. It is not warranted for severe cases from what I have read, but ideal if someone has moderate hypertension and drops are ineffective or have side effects. I asked about rejection and he said it is titanium and has an excellent track record. Amazing tiny device.

[Telian in reply to Reeceregan]

My mum had it done and she didn’t have cataracts. All went well.

[Reeceregan]

I’m positive about it, so we’ll see.

But I wanted to point out that as PRMPro said, there are other options to lifetime drops for glaucoma. And also that the drops do work. My pressure levels were high before the drops and they brought glaucoma pressure back under control. Good luck with your investigations.

[Maryis80]

Been on Pred for nearly two years now and optician now says I have cataract in left eye that should be done. Prior to this my rheumy sent me for a PetCT scan to see whether i had GCA. This proved negative but did show up polyps in my bowel, which have now been dealt with! So I was glad to know that the scan proved something. Three cheers for BUPA!