My eyes have felt a bit odd over the last few weeks, and I'm definitely not seeing as well as I did.
So - rang the optician. But was told that as I'd had a test a year ago, I should wait another year for the next one. I insisted that something had changed so was finally given an appointment.
Thank goodness! Last year my eyes were fine and showing no change, despite all the various meds, infusions etc. This year I'm told that I've developed steroid-induced cataracts, need new glasses, and must start thinking about having the cataracts operated on.
I'm shocked at how quickly this has happened, even though I've now got down to less than 10 mg of steroid.
Guess the lesson is - don't listen to the NHSs usual timetable, check how YOU feel, and shout when you need to. Things can change very quickly.
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BronteM
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If you are on steroids you should have been told to have annual eye checks - for exactly this reason. Pred can also cause increased pressures (like in glaucoma) which also need to be checked. I live in Italy so I can't just go to an optician, it means a hospital visit, but when I went last year and had EVERYTHING checked, I asked the doctor how often and she said "6 months!" but agreed annually was fine really but they like to err on the safe side. I'm appalled your optician didn't know that. I gather Specsavers and co are very good about it usually.
If you are to think about having the cataracts done that suggests it could be soon - why do you need to spend a fortune on new glasses? You'll need new ones post cataract anyway - probably just for reading as they use distance lenses, if you pay you can have variofocal ones. If it were me I'd be asking for my op next week - after a lifetime of specs on if I'm not in bed (can't see past the end of my nose without and PMR put paid to contacts) the thought of having a cataract op sounds wonderful!!
Wow! You poor thing! The other lesson is that YOU know your body better than any doctor!
I'm so sorry you're having to deal with cataracts. On the plus side, it should be a lot easier to treat and manage than glaucoma.
I've started having eye involvement from UV but not from medication--and it's not affecting my eyesight yet. I see an ophthalmologist when it happens just so he can monitor me, then I have a follow up after it clears.
You stay on top of your doctors. I know the healthcare system is different there from the US, but you keep insisting when they push back.
So sorry to hear this! It just shows that " you do know your own body better than the doctors when you have Vasculitis" John has always had a yearly check up at the opticians and even now he is steroid free, he still has a yearly appointment.
This information is on the Vasculitis UK website cortisone-info.com/Side-Eff... it is under the heading vasculitis.org.uk/news/cort... if you follow the blue link on this page you will be taken to the Cortisone (Steroid) Information website.
I know there are other members in the group who have experienced cataracts and had them removed successfully.
To be fair I had to argue past the receptionist rather than the optician! And I was pretty sure that I did need yearly checks; it's the speed with which the cataracts have developed that has been really surprising. At the moment I'm not thinking about an operation as I'm still struggling
to get free from infection before my next rituximab. I bought the cheapest single lens glasses..the alternative was to stop driving, but I'm still managing to read comfortably.
Surely we should all have regular sight checks or how would we notice slight but significant changes in our sight? It's your life, your sight and is not a decision to be made by a receptionist. Perhaps a change of optician? ATB.
I had an eye sight test as my sight in one eye went blur in about 6 months form having perfect vision so off I went to the local well know optician.I was told my left eye had deteriorated through my age 56 and meant for the first time ever I need glasses so I accepted the findings.I month later I experienced the same problem with my left eye and went back `this` time to be told I have cataracs on the left eye about 10 years worth?I said this was not mentioned at the time of my first testing? and their Director said at that time its was not worth mentioning? so i spent £££s on glasses that are of no use to me.
I should not have gone to S........S because it saved me nothing.
My eyes detereorated rapidly too after high dose steroids. I was already quite short sighted but when the prescription changed from -8+ to -12 between appointments it was me that had to ask if there was not something wrong with that detereoration rate?! The optician could not see the steroid induced cataracts - it took a specialist to see them.
My eyes are almost perfect for distance vision now and off the shelf reading glasses fill the gap. It is marvellous after 50+ years of being 'blind' with no glasses!
Thank you, that's very reassuring to hear. I just seem to have had too much hospital and too many different procedures recently, so I'm reluctant to start off on any more. But life without glasses is quite an exciting idea!
You're right. I had a standard eye test in jan a few years ago, thought sight in the right eye seemed to be going down a couple of months later... Went back to optician who had me at the emergency eye hospital hours later with major flare up of gpa in my eyes. Never leave these things to standard testing if you're at all unsure.
Hi BronteM: I just had high dose steroid induced cataracts removed from each eye and an operation on my left again having something to do with glaucoma and is still being watched closely although I have been off high dose steroids well over 2 years. It was the ophthalmologist who found and operated on my problem and I continue to see her every 6 months. Phone for any eye pain. I was advised to have the cataract operations done asap as it can only get worse or remain the same. It cannot dissipate by itself. It was more of an irritant than I thought and I was glad to be rid of them. They wouldn't have caught the glaucoma symptoms had they not done the cataract operation. Now I wear reading glasses. No more fish, dots or strange floaty things in my vision. It's quite a relief. I highly recommend it. However, in YOUR case, I might get a second opinion from an ophthalmologist before allowing anyone to cut my eye. Good luck
Thank you so much for your experience, it's very helpful. Thankfully no sign of glaucoma so far, but I'm sure you are right about getting a second opinion before I go any further. No floaty bits yet either, but I'm definitely happier reading on my kindle where I can adjust the light etc. So the prospect of simplifying the number of pairs of glasses that I scatter everywhere is a positive one!
Hello BronteM. I have found Specsavers excellent during the past 2+yrs. Having GCA as well as PMR I was given 3 monthly eye checks for the 1st year, now annually. Had my eye test last week & apart from a cataract growing in one eye things are OK, not damaged as yet by the GCA. My initial steroid dose was 60mg, now down to 6mg & keeping fingers crossed!
PS. I was told not to change glasses too soon as things change when the steroid dose is reduced.
I was steroid free after taking a low dose of prednisone for vasculitis 20 years ago but ended up with cateract surgery 3 years ago. I was shocked as it had been so long. My eye doctor asked me if I had ever been on a steroid and when I told him I had been in my 30years he said that was the side effect to being on prednisone. No doctors will ever tell you the side effects!!!! Be your own advocate! If you don't know what your getting into google it and research everything. You can always get a second or third opinion!!!! I didn't have the opportunity all of you do now.
I think that part of the problem is that when we are put onto the steroids etc, most of us are too ill to care or even understand about the side effects. We are told that they are the only thing that is going to give our disease a good knock on the head, and that if we don't take them we are likely to suffer kidney failure, heart problems, strokes etc. All of which sound much worse than cataracts.
In fact I did know about the possibility of cataracts, but I've only been on steroids for two years, and could think of no-one in my family who had had them. So I was being fairly laid back, and anyway there are plenty of other things to worry about! I thought long term use meant many years, not two. It's the speed with which they've developed that really concerns me, and why I put up the post, in case there are other people thinking that they are safe for the time being.
I think that is exactly what happens to people. Steroids are presented to the patient, but the patient has so many symptoms, including foggy brain to complicate matters of understanding, that really none of the ill ocular effects even registered with my brain until well after I was completely weaned off steroids. I took 80 mg. prednisone /day for about 2 years. I portrayed all the side effects; hump back ( and they mean Quasimodo) moon face, bright red face and hands, extreme upper body weight gain. I was 125 lbs. when I started and 200 lbs. when I fired the neurologist on my case and gave the case to my rheumatologist where it should have been all along. I was in a wheel chair due to balance issues. I'll never forget my first appointment with her. She said, "Where is the pain?" I said, "Everywhere". I was on over 20 drugs, which gave me diabetes on top of everything else. She put her hand on mine and said,"You don't have to worry anymore because we are going to war with this thing." She had me in aqua therapy the next day. Physical therapy every morning, a gradual weaning off most of the meds, that got rid of the diabetes, Fentanyl and Vicodin to control pain. We began with Cytoxan treatments and the same thing happened. It was presented as if it were the last step in putting CNS to sleep for good. But one of the side effects is bladder cancer which I am still fighting. I was walking with a cane in no time, however. To be really honest with you, I think if I had stayed on the steroids much longer that doctor would have killed me.
I never want to tell newly diagnosed patients my story though. My story may not end up to be their story. They may have a perfectly fulfilling neurologist appointment. Whereas, if I tell them the horror stories I had with mine they may listen to their own with a tainted ear unnecessarily. I always tell them two things; firstly, I am not a doctor just because I have the disease. Secondly, my story is completely different than their own. I tell it so they know they are not alone, to share information and to remind them that 10 years ago it was considered terminal. Baby steps. Sigh.
I was told that they put me on prednisone because they really didn't know what else to do with me back then. I was on it for a 18 months. It is scary. No denigning it. Couldn't walk and had to go in a wheelchair to anyplace Imwent. The pain in my feet was so bad I slept and sat on the couch 24/7 with my feet in pans of ice water to help kill the pain. There was nothing for nerve pain back then. We all have our own story to tell. Now that I am going through this again I know what to expect. Yes there is the scare of organ damage. I have a problem with all the meds they keep giving most of you. When it doesn't work they put you on a new drug. Again, they really don't know what to do with vasculitis. If you feel you are in good hands I commend you. I don't trust most of them and know this is a disease you need to look into a good vitamin (b12) for nerves, antioxidants, and the most important is amino acids for cell repairs and to make new ones. Especially if you are on a cancer drug that is killing them off and pregnisone that suppresses them. The best advice I ever got was from a stranger that said to get on a GOOD Vitamin (organic is best) Please go to GNC and purchase the book "Prescription for Nutritional Healing". (By James E. Balch, MD- Phyllis A. Balch,C.NC.) then go to page 27 and you will be surprised what is out there that you can help yourself. I will never go off Amino acids again. A reg vitamin is good to do and most people just take that but we are different, we need cell support to cure Vasculities. Thanks for listening, and hope all of you the best as I do know what you are going thru.
Hi I now have Scelitis in one eye due to WG and last week the eye consultant said I have cataracts starting in both eyes , I'm on 10 mg steroids dropping 1mg a month
So you are also on a relatively low dose. Have you been taking steroids for a long time? I've also got quite sore eyes, but hope they'll improve after my next infusion.
My second flare was 18 month ago then I was put on 60mg and have been reducing since then
Have you asked your GP to refer you to an Ophthalmologist?
Years ago, I was having so many problems with Optometrists, that I asked to be referred. I am now still seeing an Ophthalmologist and can recognise the flares and all I have to do, is telephone the Consultant's secretary and I am seen speedily. I had one [steroid induced] cataract done in 1992.
Ask to be referred, you only have one pair of eyes.
That is good advice - thank you. I've got my next infusion on Wednesday and was planning to ask advice once I've got through that. But once that is done think that's probably my best option as it's seems better to get things underway fairly soon.
In answer to your actual question, yes two days ago. I am fortunate that both my Doctors/Consultants and my local Boots Opticians, are understanding of my condition. I too had cataracts develop, as a result of steroids, some years ago-about seven, I believe. I had successful surgery, performed on them, at Ipswich Hospital. I now only need glasses for reading, and my prescription hasn't changed, for several years now.
I have, in fact, been given the 'green light' for my eyes, skin and my new (transplanted, two years ago) kidney. So, not withstanding all my 'usual' problems, I'm not doing too badly!
Anyway take care, of yourself, maybe I'll 'see' you around! (Sorry, just HAD to)
That's interesting....no one suggested the glaucoma issue to me! But I have had both cataracts sorted now. It was remarkably straightforward though one eye still gets very dry occasionally. And the change is wonderful! I've been so excited all autumn as the colours have been glorious and this year I've seen them properly for the first time in ages. Even though my cataracts developed very quickly because of the steroids, the change was slow enough that I didn't realise what I was missing.
I think my Wegeners would not have been diagnosed so quickly if ,for vanity and short sightedness sake, I hadnt had lens replacement surgery. After follow up appointments I had fluey symptoms and then developed scleritis. My GP thought it was conjunctivitis and just prescribed antibiotics. My eye surgeon recognised the GPA symptoms and got the rheumatologist on the case immediately. He is the only one who has thought any urgency has been needed (although my husband thinks the eye surgery is the cause for getting the Wegeners). I assume I wont have to worry about cataracts anymore but I do get very dry eyes in, around and behind, around the socket, on the skin on the cheek bones. My rheumatologist says he doesnt know why that is. I also have a clear blister on one eye and get blocked tear ducts that sometimes ooze white liquid if I put cotton wool soaked in hot water on them. I looked up Sjogrens and got even more worried. I will definitely go to an optician to check out everything else....I feel like I really need yet another professional opinion from someone who knows bugger all about the illness and says "I dont know what to tell you".....I seem to have heard that so many times in the last 8 months.
Hugs and sympathy to all of you who get similar answers x
This does indeed sound suspiciously like Sjögren’s syndrome.
I myself have Sjögren’s syndrome...
Auto immune diseases beget autoimmune diseases. We tend to collect them, you know...
Dr Price in Swindon is the expert on Sjögren’s in the UK. She is well worth a private consultation if you can possibly manage one.
She is happy to the send her consult letter through to your GP and cc any and all doctors involved in your care, as well as recommend to you a specialist Rheumatoligist in your area on the NHS.
If you speak to the actual Optician, rather than a 'Box Ticking' Receptionist, then you will find a, far more, caring/ sympathetic Ear.
I live in Clacton Essex and we have, an exceptional, Boots Optician- 'They' are Very Friendly, and helpful. I have an 'HC2' form, that entitles me to free Glasses- within a certain range. However my Latest Glasses broke, just snapped in two, at the Bridge. I took them into Boots....and, in a few minutes.....She had replaced the broken frames, with my existing lenses and cleaned them too- all at no charge. I call THAT service! I would recommend Boots Opticians, over their rivals, any day.
I developed Cataracts, as a direct result of Steroid Treatment, about a decade ago. Ipswich Hospital, that I was and am, Under performed the Surgery. Do you know about Cataract Surgery BronteM? If not I CAN 'Tell All', though there Is a Post, of mine, relating to this....Somewhere!
I've 'Drabbled On' quite enough now- you can say THAT again! Kindest wishes
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Found out why no referral - computer lost it!
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