Help needed

[Deneez99]

Have been on Prednisolone for just over 18months my eyesight seemed to be getting worse. Then two weeks ago suddenly I had blurred vision in one eye. Visited the optician to be told that my eyesight had deteriated and that I had a posterior sub capsular catarract in my right eye. The NHS waiting list for cataract surgery is two years so I have opted for new glasses to hopefully help me in the waiting period.

I blame steroid use and I am considering stopping taking them I am currently on 2mg.

Anyone had eyesight problems ??

Looking forward to your comments

Denise

[Koalajane]

Yes steroids do speed up the cataracts. I have duscovered wearing reactolite glasses and wearing a baseball cap has meant that my cataracts are staying as they were and not ready for treatment yet. Do not stop your steroids suddenly as it will not be good for your adrenal function

[SnazzyD]

I have this and they came on rapidly from nothing over 3 months. However that was about 3 and a bit years ago and they’ve not changed. It is a known side effect of Pred. Although you are on a low dose you shouldn’t just stop because your adrenal function may not cope well enough yet to deal with having to produce 2mg’s worth of its own cortisol. Also, although it is a low dose it may be quite enough to keep your PMR quiet and by stopping you may risk a flare and going back up to a higher dose you are on now. It’s a pain, but I’d stick with where you are and reduce as if your eyes were fine, slowly.

[PMRpro Ambassador]

The cataract is already there - stopping pred now won;t make much difference. So please don't just stop the pred suddenly, even at such a low dose it is the difference between the adrenal function that has returned being supported to keep you safe. Poor adrenal function can result in an adrenal crisis if you end up in a stressful situation and make you very ill. Even this final reduction must be slow unless you have had a synacthen test to assess how much adrenal reserve you have.

[piglette]

It does seem that the NHS is trying to discourage people with cataracts in the hope they will go privately. The cost is around £2.5-£3.0k privately. For my second hip I went privately as I just could not stand the pain. The cost was a bit worrying though, but in my case definitely worth it.

[PMRpro Ambassador in reply to piglette]

Can't take it with you piglette! And care when disabled doesn't come easy or cheap.

[piglette in reply to PMRpro]

I so agree. I have friends who are quite well off, but insist that they should have an op or procedure on the NHS. Personally I will borrow from the bank to get rid of the pain. We are helping the NHS by saving them the cost.

[PMRpro Ambassador in reply to piglette]

I used to be the same - but I think now that if you CAN afford it, there is absolutely nothing wrong with going private. There are things NOTHING would induce me to have done privately unless they have an ICU and proper staffing though!!! Or the private hospital is next door to the NHS!

[piglette in reply to PMRpro]

I would never go to a private hospital that did not have an NHS hospital down the road. I do not trust medics that much!!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Most don’t want a ICU though do they, they just want the straightforward, easy and little risk as possible ops..

[PMRpro Ambassador in reply to DorsetLady]

There's a risk with ANY op that could need an anaesthetist in the middle of the night.

The private clinic in Dundee was further down towards the river - maybe a couple of miles. Woman had a nose job there - started bleeding during the night and they had to wait for an NHS ambo to transport her. Too late.

[agingfeminist in reply to piglette]

I agree one is often pushed into paying privately. Sadly this means we support a two-tier system...private medicine is iniquitous...they cream off the easier more profitable procedures. I am afraid there are too many greedy doctors...they have a good salary and an amazing pension. But when I needed surgery, the surgeon said..."if you don't go private you won't know who is doing the surgery, probably one of my junior staff (!!)..and I have no idea when we can do it"......

[piglette in reply to agingfeminist]

The NHS does not seem to want to do a lot of procedures nowadays. My nephew has a cancerous skin lesion and it has been suggested he goes privately to save time.

[Waves2]

I also had a rapid development of cataracts and was referred for surgery. I had both eyes done within 6 months by the NHS so the wait may not be as long as you fear. It makes a wonderful difference to see clearly again. Good luck.

[Grannymiaow]

Like you I had/have rapid deterioration of pre-existing cataracts. I had the first op last month after a wait of only 4 months on the NHS. It has made a huge difference.

I too had "stop gap" glasses expecting a long wait. They helped for only

about 3 weeks.

I wouldn't bother with that again.

I'm now waiting for the second op with fingers crossed it won't be long.

Good luck!

[Noffiepawrent]

Is there any way of avoiding eyesight deterioration and reducing the likelihood of getting cataracts when on pred?

[DorsetLady PMRGCAuk volunteer in reply to Noffiepawrent]

Wear good quality sunglasses or get transitional lenses in usual spectacles when outside -even on days you don’t think you need them.

[Deneez99 in reply to DorsetLady]

I have always worn transitional lenses and I am not a sun lover so you will always find me in the shade.

[PMRpro Ambassador in reply to Deneez99]

But you can develop cataracts even without being on pred. The use of reactolites helps delay the progression of pred-related cataracts - but there are no 100% guarantees.

[PMRpro Ambassador in reply to Noffiepawrent]

You may not get them at all - I've been on pred for nearly 13 years and only this last eye check saw the start of cataracts at the age of nearly 70.

However - one important factor is using sunglasses whenever you are outside and preferably using reactolite/transitions lenses all the time. jinasc had the signs of a starting cataract when she was diagnosed with GCA and her optician immediately switched her to reactolite lenses which she has worn over since. The cataracts are no further developed than they were then - despite some 5 years of GCA level pred doses and quite a few years in remission.

[Nightingales]

I wondered who told you the waiting list was 2 years. My optometrist referred me to my GP and with patient choice I was given a choice of three hospitals, one of which was private. I was seen and operated on within three months.

[Nextoneplease]

Like Nightingales I was offered a cataract op within three months of my opticians referral. At least in this area (UK, south east), cataract ops seem to have been given priority. I hope it’s the same for you. Good luck x

[67Blue]

I have had the reactolite glasses plus Specsavers prescription sunglasses for years but that didn't stop the Pred advancing my cataracts, from barely there to dire in about 12 months. . As i came under their criteria the optician gave me three choices of where to be referred about the cataracts, and said it is usually three months. I chose the closest hospital, and was asked if driving was important and when I said yes I was given an op within weeks for the first cataract. The optician then had to apply for the second, which may or may not come up, as they have given me one good eye but have had a letter saying they are considering it. As I can see perfectly out of one eye, just a bit annoying to be lop sided and am using temporary reading glasses.I will see about private if it doesn't come eventually. I do know people who have been waiting nearly 2 years for the second, but no trouble getting the first. That is in an East Anglian hospital so would push to see if the first could be done before two years.

[Deneez99 in reply to 67Blue]

Thank you I live in rural Wales so not sure x

[Whippetygirl]

My Optician recommended cataract surgery and referred me to the Optegra Eye Hospital Manchester, they contacted me within 48hrs , to book an appointment for assessment. This was followed by an appointment 6weeks later for surgery on my right eye, 8 weeks later I had surgery on my left eye. I think they are nation wide as they phoned me from London. Good luck, it is NHS funded hospital not private.

[Karenjaninaz]

I had cataracts in both eyes well before I ever took a prednisone pill. It’s common to have cataracts in the 70s. Or even before. Problem is the glasses don’t help very much anymore because it’s like looking through dirty glass. (Cloudy lens)