I was diagnosed with GCA in January this year & currently on 20 mg Pred - trying to taper down. I wear glasses & was told by my Optician in Oct last year that I had the beginnings of cataracts ('age related') - I'm 64. I then had them tested again in April this year as the blurriness I had experienced since diagnosis was getting worse - told this time it was the steroids/GCA & that once off the steroids they 'should' settle down again. He also said ' no change in prescription'. Last week I had an appointment with the Opthamologist at the hospital (routine with GCA) & he had told me that I have cataracts & would I like him to sort them out (do the op)? I was, to say the least, a bit shocked as this is all so sudden. I asked if they would continue to get worse & he said they might/might not. I told him I would wait for now (as I was in shock tbh).
I have now read up about cataracts & apparently if you have them, the sooner they are done then the better? I know it's a simple minor op but I am absolutely terrified at the thought of something being done to my eyes! ( My main hobbies are sewing-/embroidery & reading).
Can anyone advise me on the op/if this is normal when on steroids for eyes to deteriorate so quickly & any other help/advice please? My CRP & ESR levels are now very low & I'm tapering slowly down.
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Janeval
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I had Pred induced cataracts that appeared over a 6 month period. I was told it was unpredictable as to how fast they would worsen if at all and their rapid appearance was not an indication of continuing rapid deterioration. They were too mild to justify an op so I wasn’t offered one. I think that was 2018 or 19 and now I’m no worse and possibly a bit better since I stopped Pred Aug 2020. The only thing I can’t do with ease is drive at night. Yes, having anyone monkeying about with my eyes gives me the willies too!
I'm in a similar situation- very quickly appeared but I was told last year that I had the start of them, so maybe mine will just continue to deteriorate. It's just the thought of the op which terrifies me. Having something coming towards my eyes when I can't shut them or turn away- makes me shudder! However, I know I'm going to have to make a decision quickly as there are those dreaded waiting lists now!
Unfortunately steroid induced cataracts are quite common -and yes they can deteriorate quite quickly if they were already forming pre medication.
Ophthalmologist is correct they may get worse, they may not…but they are not going to improve without some intervention.
It is a daunting thought perhaps -but for many it’s a no- brainer. Me for example -I had already lost sight in one eye due to late diagnosis -so when cataract developed in my good eye - there was no wavering if I wanted to continue my life as I wished, by then I was widowed so needed to drive etc. In fact I pushed for it to be done … Was successfully replaced in October 2014 -in December that year I travelled to NZ -to see family and the magnificent country.
September 2022, at check up was told the other was had developed - but no point in having in that replaced.. if there was I would!
Your choice of course, but many have to wait years for them to be replaced, so if offered , then serious consideration is required… and yes the operation is straightforward, very common -and brilliant outcome for the vast majority
I asked about the waiting lists & he said that yes there was a waiting list but wouldn't be very specific about how long they were. However, I was told by a nurse later on that it was months rather than years- I'm taking that with a pinch of salt as there are also the numerous 'cancellations'. My main problem now is that when I am sewing or reading I am struggling & for me that is not good atall.
I think I will at least go in the waiting list which I suspect will be quite long! I shall meanwhile see if there is a meditation/yoga breathing practice I can do to help me through the op!
That is correct. I had an eye test last week and was offered the operation the week after at a local clinic. I didn’t accept as it didn’t fit in with holidays. I am booked to have it mid August.
"told this time it was the steroids/GCA & that once off the steroids they 'should' settle down again"
That is rubbish - once a cataract has developed, stopping pred won't remove them. At best, the progression due to pred may slow but most older people develop them eventually anyway and you were. It used to be that you had to wait for them to "ripen" before they could be removed, that was a methodology problem. The techniques used these days allows them to be removed sooner and so there isn't the period where many things are a problem when people have hobbies like yours. If it were me and he is offering, I'd take it and run given the current situation in the UK!
Thanks PMRpro. Tbh I didn't know anything about cataracts & I suppose I still feel young enough to think that I'm not old enough to get something like this 'because of my age' - but with the GCA & steroids knocking me for six & now cataracts I think I need a reality check!As I said to DorsetLady I'm going to ring tomorrow to go on the waiting list as I suspect I'll be waiting quite a while anyway.
Hello, Janeval. I would like to tell you my experience of cataract surgery.
My cataracts were the fast growing growing kind. I had to give up driving at night because of headlight/street lamp glare. My eyesight became progressively worse and interfered with reading, sewing, watching TV, craftwork and even cleaning tasks because I was unable to see spots and stains, etc. I agreed to surgery which was nowhere near as daunting as I’d imagined. The eye was numbed and held open by means of an instrument while the procedure was carried out and there was no urge to blink. I couldn’t see anything coming towards my eye and felt nothing. The procedure was over and done in what seemed like no time at all.
Your eye will feel ‘gritty’ for a few days afterwards and you will be given literature explaining dos and don’ts, eg. you mustn’t bend down or lift anything for a short while. You will have drops to use for a period of time which I was able to do myself.
Was I glad that I’d had the ‘op? You bet I was! So much so that I had the cataract in the other eye removed several months later.
I had cataracts relatively young, several years before I went down with GCA and PMR. I felt very squeamish about having operations on my eyes, but went ahead and was so pleased with the results. Everything was so much clearer and colours were brighter. I found I could count the bricks in the wall of the block of flats across the road - before it had just been a brownish lump. I knit, sew and read and I found these activities far easier after the operation. For example for the first time in ages I could thread a needle without using a needle threader, and I was now able to knit black and dark colours without problems.
It's now nearly 12 years since I had the operations and my eyesight is still excellent.
Sounds amazing! I have found the blurriness & not being able to see things clearly even with my glasses on so frustrating- especially threading a needle! I love my sewing- machine, hand & embroidery & I can't imagine my life without being able to carry on doing it so yes, I do realise from reading other people's experiences now that it is something I need to get done! Thank you
Good luck. Just remember to be meticulous about using the eye drops until your eyes are healed and you should be fine. By the way I also had mine done separately with a fortnight in between the ops.
I have a relative who had one eye done at a time.... I think there was about a 2 week interval for the other eye.... that is probably what I will do for my cataracts... At least the fear of something going wrong is alleviated somewhat since it is limited to one eye...I think..I'm not an expert.
I did have complications with my first eye. They couldn’t put the new lens in as some of the cataract fell behind the eye. I had to have a second op a week later and it was sorted with no problem. The second eye was done 2 weeks ago and all went very well
I developed cataract in my right eye April within six months after having been clear on November visit to Optician. I was diagnosed with GCA January with acute headaches placed on 40mg Prednisolene I am now on 17mg relapsed having got to 6mg. My Rheumatologist wants me at the lowest dose for cataract op. There is a six month wait in my area of the UK with no date given. Good luck with your tapering
I did wonder if the op will be dependent on what dose of Pred I am on, but am also going to give my Rheumy a call tomorrow & have a chat to him too. I've no idea on the exact waiting times here but hope to find out this week. The sooner the better for me, then the less time to think about it!
I was on 8 or 9mg.. but others been higher… it’s not as crucial as having a major operation and surgeon worrying about healing or needing extra during operation.
20mg is a bit high to be fair - but it really does depend on the eye surgeon and some are totally unfazed. The risk is of infection of course - but you have to have steroid eye drops anyway.
have you not got a SpaMedica in your area as I was referred there by my optician as not long to wait, they are a private eye place but do NHS patients , ask your optician x
I had my second cataract op on Thursday and all went smoothly. My appointment was for 9.30 and I was home by 11.30. You have to wear an eye shield after the op and can take it off the next morning. You then have to wear it at night for 2 weeks. I have 2 lots of eye drops to take 4 times a day for 4 weeks.
I did have complications with the cataract op on my first eye but this was put right very quickly so that I knew if anything had happened at this op it would be very quickly rectified.
I must say I am really glad to have had both eyes done as my eyesight has improved so much.
It really does not hurt having it done. I think you can ask to have it done under general anaesthetic but I really did not want that.
Thank you- & no, I wouldn't want a general anaesthetic either. I think by all the replies & encouraging info everyone has given me, I feel more relaxed about going ahead with the op now.
Had both done last summer, worked like a dream and the first one was what they call a dense cataract, meaning so far as I can tell it was thicker and harder because it had been left so long (started pre-Covid), more difficult to get all the bits out and they couldn't see behind it to be sure all was healthy, therefore dire warning. Don't leave them! Six month interval. NHS farmed out to private hospital. Appalled you were told they'd 'settle'. How about all the people who develop cataracts who aren't on steroids!
My PMR started March 2020. The bad cataract predated that. I don't know that it developed any faster or that the second one was exacerbated by Pred.
I do know that, except for very small print, say labels, I no longer need spectacles, that I am reading and typing this with my very own naked eyes! I guess for sewing you might need them.
PS, they weren't concerned about PMR or Pred and nor was I since I wasn't yet at this site and didn't know there might be probs. There were none, though possibly my CRP, which always runs high anyway, registered the double event by being 48 afterwards. Only med they were interested in was Warfarin.
Is be quite happy to not have to wear glasses- or at least not varifocals & all in hearing on here is positive, good results & several people not having to wear glasses all the time after the op, so it's very encouraging.
hello Janeval I was the same age as you when my cataracts developed very quickly and I had the operation to remove them . My eyes were so bad I couldn’t read or drive so the operation was a no brainier. Unfortunately COVID happened in between having both eyes done so it delayed the second eye operation. I had been on steroids for 14 months at that time and my previous eye tests had only shown ‘the beginnings’ of cataracts. Take care x
My eyes do seem to have deteriorated very quickly since I've been on Pred & I'm struggling even with my glasses now, but like you I was told only last Oct that I had the 'beginnings' so they've come very rapidly I think
I have just had my cataracts done in both eyes one in May the other 3 weeks ago . Steroids for PMR had ripened them quite quickly apparently. Anyway this is to reassure you the operation was simple, it was painless and fairly quick (about 10-15 minutes)
As for sight it’s marvellous can see clearly and the difference in colours is amazing. Still need reading glasses but wish I’d had them done 6 months ago when it was first suggested. Can knit, crochet, read without problems now. You will not regret having them done, try not to let your fear get in the way.
hi Janeval, I think all this advice has encouraged you and I too would recommend having the procedure which is carried out quickly and is painless. But the leaflet given to you about possible problems which can arise is very daunting.
I had my first eye done after a penetration injury and vitrectomy done under a local anaesthetic so any fear I had of surgery to my eye had gone after wonderful care at Singleton Hospital in Swansea. And I feared I would lose my eye, not just my sight! God Bless the NHS and Mr Hill.
When it came to my other eye many years later I was very fearful, expecting similar pain, needles etc, but the procedure is done using drops and the team I was under was very professional and caring. Like you my cataract developed quite quickly as a result of steroids, and my age probably played a part too.
I have blepharitis in both eyes now so I advocate good eye hygiene afterwards. You will almost certainly need a new prescription for glasses unless like some lucky folk you don’t need glasses at all. It will make you feel even younger if you can do without them , so good luck and go for it. Chrissie
For blepharitis, which I had, solved with hot salt water soaks to eyes 4x day . Simple but effective; the soaks open up the clogged oil glands on the eyelids.
Hi, am in a simi!at situation, recently diagnosed with both. Now on 60mg of Pred. I have been told no operations for me due to my HF and cataracts are best done later rather than sooner. I hope this does not confuse matters.
Well I'm going to be able to taper down a bit more before any op but this is my 3rd attempt at getting from 25-20mg so I'm just letting everything crossed!
I had my cataracts removed just before I was diagnosed with PMR so before taking any pred. It was quick and painless and you never see anything going into your eye. Seeing well again after the op is almost magical.
My cataracts were pre PMR, so no steroid influence, but having them removed was one of the best things I've done. Like you, I didn't relish the thought of anyone touching my eyes, but you really aren't aware of much. I just had the anaesthetic eye drops, but you can have sedation as well. After the first one I was back home by 10.30 and READING WITHOUT GLASSES for the first time in over twenty years! Please don't put off having the procedure. It really is little short ogf miraculous.
Don’t be terrified. My cataracts quickly deteriorated after I developed GCA and I decided I wasn’t safe to drive at night, although the Optician said I was legal.
The procedure was simple, a local the first one and 2 months later a wiff of general because I kept coughing. I have to say it was life changing, what I thought was stunning streaked blond hair was urine coloured, my paint work was gleaming white and the house looked as though it has been washed in bleach. Before I traveled with an optical pantechnicon , glasses , prescription sun glasses, contact lenses , solutions and lotions
I developed cataracts 12 years ago, long before my present GCA/PMR. I was 65 and told by the optician that they would develop slowly. Well, they didn't. Six months later I was nearly blind, fortunately had a small medical insurance, so had them done immediately with a 4 weeks' gap between ops. I too was terrified but actually the op was very quick, no pain, and I have been delighted with my 'new' eyes for the past years, as having been vey short-sighted all my life this was corrected. I do need reading glasses but life without glasses is joy.
I have been on prednisolone for three years now for PMR, and am now down to 2 mg daily. However, my cataracts depreciated quickly over the same time period and I had both cataracts removed at the beginning of this year. It was nothing short of a miracle and nothing to be scared of, although I was at first. Each eye took about fifteen minutes and were done three weeks apart. I could not believe the amazing improvement!!
I also sew, but asked for long lenses so I could see distance, and have corrective glasses for close up work and reading now. My eyesight for sewing is now much better than it was before the op.
Don’t be afraid of the surgery. The surgeon will talk you through every move. I still consider I am a see- ing miracle now!
hi, I had my first cataract done in February this year (age 72) and was petrified as I like you don’t like anything done to my eyes. They were all fantastic in theatre and the surgeon spoke all the time with music in the background, I even told her my eye wasn’t numb as that’s how bad I was 😱 she said it was and I never felt a thing, looks like rainbows as it was being done it only took 15mins I think and seriously don’t know how frightened I was but you will be fine 😀 I go for the assessment this Thursday on my other eye which is getting bad cause of preds I was told cause them. This time I can’t wait to see again even though I know what to expect I am still a tad nervous but not half as bad. Please try and not get yourself to bad as it’s over so quick, they put a eye patch clear plastic on after with holes in it which you wear that night and next day then you can take it off. Please take sunglasses with you to protect that eye with the light. I am now down to 4mg which were 60mg after 10yrs of good and flare ups 🤬 good luck and think positive outcome of seeing again!!!
Someone else got the pretty colours! Maybe it depends on what anaesthetic they use but the light show is absolutely gorgeous, like a lovely kaleidoscope. Otherwise about the most exciting bit is the surgeon telling you sternly not to blink - felt nothing.
Just remembered - the Pred eyedrops for after were absolutely fine and they're all that matter, but I was also given something supplementary, Thealoz, in case of dry eyes, and my eyes didn't like that at all. Binned them.
I had cataracts developing for a while when the optician said they were nearing being eligible for surgery. At the out patient appt the guy seeing me said he wouldn't have his done at that stage, but I was experiencing the sight loss and said I wanted to go ahead. It was just before Covid struck when they were done and I was so glad to have had them done. I could even read the the sign above the door as they wheeled me out! Such a difference. A colleague on another forum stressed the importance of eye hygiene which was very helpful. I have said before - better than having dental treatment!!
I started Pred in December 2019 and following advice from here, I got some sunglasses in January 2020 and wore them religiously. At that eye test, I had no cataracts. By September, I had a noticeable loss of vision in my right eye and by November 2020 I had a 'significant' cataract. By December 2020 I had no vision at all in my right eye. I then developed acute glaucoma, which resulted in a trip to A&E followed by a peripheral iridotomy and then cataract removal, both as emergencies, over that Christmas.
I was advised that the cataract was almost certainly caused by the Pred.
The irony of course is that I turned out not to have GCA after all and didn't need to be on Pred in the first place!
I had cataracts removed from both eyes over the past six months and have had a torn retina. I am so glad that I had them removed. First of all they sedate you. They put in a numbing gel into your eyes as well as eye drops to dilate your pupil. If you do feel anything you tell them and they will give you something. The corrective lenses that were put in my eyes were to correct distant vision. I knit and do counted cross stitch. I wear glasses to do up close work. I am glad I had the surgeries done. I see much better. I have my next laser surgery for my retina a week from tomorrow. My torn retina was not caused by surgery or cataracts. Oh one other thing I was on eye drops for about a month post op. I would recommend getting a pair of sun glasses prior to surgery. My eyes were photo sensitive post op and for a few weeks after
Thank you so much. Please update us when you can. Hope things goes well for you. Oh one thing I forgot. Post op you can't lift anything over 10 pounds and you can not bend at the waist for 2 weeks. You have to squat. This is to prevent the new lens the surgeon replaces
I have had PMR and have been taking prednisolone for three years. I recently had a cataract operation on my right eye, and was very apprehensive. But as it was like looking through fog in that eye, I decided to go ahead with it. I needn’t have worried! I lay on a trolley in the operating theatre and was given anaesthetic eye drops in my eye. After that I could feel nothing. So when they then put anaesthetic into the back of my eye, I didn’t see or feel a thing. And this ensured that the whole operation was pain free. They put a plastic cover over my face with a hole for my eye, and all I could see was a sort of psychedelic sky with pink, white and pale blue clouds coming and going! Every so often they would put drops into my eye, which felt quite pleasant. I felt quite relaxed throughout; the only slightly worrying thing was that the consultant seemed to be talking a junior doctor through what I hoped was not his first cataract operation - he was saying things like “a bit nearer the equator … yes, perfect” and they both sounded completely calm. Afterwards I was given a cup of tea and a biscuit and felt fine. I had double vision that night, and had been warned this would be the case, because of the anaesthetic; but the next morning everything was fine. Now my left eye is getting worse, and I’m really hoping that it will be operated on in August or September. This time I will not be at all apprehensive, and I am really looking forward to it being done! So I hope that anyone reading this who is faced with cataract surgery will be reassured!
Sounds like a good relaxing experience! I have to say with all the positive & encouraging replies on here I feel so much more relaxed about the op now. Thanks to everyone for taking the time to reply, I really appreciate it🙂
Hi, I’m also in a very similar situation to you. I’ve been on prednisone for 5 years now and My optometrist noticed a cataract forming in my left eye, just over a year ago. On my latest eye exam, he informed me that it had grown and suggested an operation to remove it and referred me to have the surgery. Apparently, I also have a stigma, which I was unaware of. I am due to have the surgery to remove the cataract in August. There are, as with all surgical procedures some risks and some people apparently can see the edge of the lens afterward but I’m informed that the success rate, is meant to be very good. I too, thought that I would rather delay the surgery and see how the cataract progressed. However, I have been told by the Ophthalmic surgeon, that it is better to have them removed earlier rather. It’s difficult to tell if it’s in my case, if my age that has contributed to the growth of the cataract, together with and acerbated by years on Prednisone. Even, if it were the case, Prednisone has been my saviour, in relation to PMR, without which, life would have been a constant struggle. Good luck with your decision. I hope the experience of others, in some way helps.
My eye doctor told me the average age for cataract surgery is 72. Cataracts are a normal part of aging. I have been on prednisone for 13 years. I am 68. My cataract surgery is scheduled for September. I have resistant hypertension. If my blood pressure is too high they will be unable to do the procedure. I will be very sad. I appreciate living in a time when cataract surgery is a simple procedure than will greatly improve my quality of life. I was told by my eye doctor that my cataracts were not caused by the prednisone, but are normal cataracts. Get your cataract surgery. There was a very interesting situation on the show Downton Abbey. The main cook, a very sweet lady, was slowly going blind. She tried to hide her situation and continue with her work, but she was struggling. The rich people discovered her situation and paid to have her cataracts repaired, giving her a new life. I am in the US, and Medicare will pay for my basic cataract repair. I plan to spend extra to get the long distance vision. Either way I am grateful I live in a day and time when all of this is possible. I just hope we can get my blood pressure to go down. My husband had his done this past April. It was super easy. He is very healthy and healed beautifully. He followed the rules, which consisted of an eye cover while sleeping for 5 days and a few weeks of eye drops. He had minor swelling for 24 hours, and the 2nd eye caused a little redness. The eyes were done 3 weeks apart. He needs reading glasses for close up, but his distance vision is perfect. Get your cataracts fixed.
Hi Janeval. I can see that you’ve had a lot of replies to your post. I’d just like to add that I had my cataracts done in April and both were done at the same time. I was going to Madeira to see the flower festival just after the op and it was so wonderful being able to see everything in bright, beautiful colour. It still amazes me how sharp everything is. I do use glasses for reading as the nhs only do long distance but I also have some prescription sun glasses that are fab! Don’t worry about the op. It is very quick, no pain and just a small inconvenience of putting in drops for several weeks. It’s honestly life changing!
Update on my cataracts- went to the hospital this week-10 days after my initial app. when I was told I needed the cataract op. Saw a different Dr & she said that they'went too bad, not any immediate rush to get them done'. Same dept, same hospital but diff Dr! She also took my eye pressures- not had this done before -& she was furious that they had not been done - no one has done it since I started with all this. They were 32 & 31- apparently far too high, so I am now on Latanoprost eye drops to hopefully bring the pressure down. Since then, I have done some research myself & an feeling very worried about this pressure. She also told me that if it didn't come down then I would have to do taking the steroids! I told her that I could not do that as it is the only cure for GCA
She didn't seem to take it on board that I have to be on steroids for the GCA & told me that they are causing me real problems with my eyes. I'm now looking at maybe going private to see an Opthamologist to see what's what as I am not happy with the fact that I've had 2 different opinions-& I'm not messing with my eyes! As I've also found out I can't have the op if my eye pressures is too high & that was never mentioned either! My Rheumy then rang me yesterday (having been informed about my eyes) & is once again determined that I should go on Methotrexate- to get me off the steroids asap. I told him I'm tapering slowly & would rather stick to doing this (after discussing it last month & telling him that I do not want to go on MTX.) I'm down to 17.5mg & an following DL slow taper method. Anyone else been in this situation??
Post as a new thread for others besides DL and me to see it.
There is NO evidence that the MTX will get you off pred any faster - Prof Dasgupta was of the opinion it has almost no place in GCA, If they want you off pred it would have to be Actemra and that is limited to 1 year in the UK.
It really is time they had a MultiDIsciplinary Team for GCA and PMR. Trouble is - even going privately, you could get a different opinion, they are only NHS consultants too.
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