Vision constantly changing

Hi...thought I would ask and see if anyone has had this happen to them while on Pred. Haven't written in a while briefly, I have GCA and next week will be 2 yrs on Pred. Some may remember me..started at 60mg with 1 flareup along the way. I am happy to say today I started 4 1/2 mg. It's been a long road with lots of side effects including gallbladder removal and so on. OK. here is my ques. I have worn glasses for reading since I was a little kid. Distance vision was close to perfect. Shortly after starting Pred, my vision started to reverse. After 2 yrs my vision is now perfect for reading (no glasses) but my distance is bad. About every 3 months I have to change my glasses. I have so many glasses I can open an optical store. Getting quit expensive since I get progressive lenses.. I go to a specialist for my eyes every 3 months and he is also amazed to the change in my vision. He says when I'm done with Pred, it's possible to go back the way it was. Also developing steroid cataracts. It's very frustrating to constantly see my vision changing so quickly. I feel fine with no other issues at this dosage. Any thoughts and comments are welcome. Thanks, bert403

38 Replies

  • Hi bert403,

    I also read without glasses now and feel that my distance vision is poor, but I haven't had my varifocal prescription change during the 4 months I've been diagnosed. My optician said there was the early signs of cataract as if this was no big deal. (Aargh!) It must be so expensive for you and I wondered if you might be entitled to NHS help because it's medically induced?

    I am full of admiration for your reduction programme. I am hovering nervously at 14 mgs having bumped down from 20 mgs.

    Was your Gall Bladder issue linked with this condition?

    I am glad you feel fine and I do not like amazing specialists. I want to be very ordinary in all this, it's weird enough!

    Go well!

  • Thx for your reply..after reading all the reply's, I guess it is a common issue with Pred. and vision. I go to a place called 4 Eyes and they change the lenses within 3 months for free if the script has changed. Hopefully I am nearer to the end of this nightmare and will just deal with another few changes. If you check out Gallbladder and Pred, it is related and can cause the removal..I do believe it was that for me. I hope you continue to decrease your dosage without any problems...Good Luck

  • bert403 - I have the very same problem and my optometrist and ophthalmologist agree it is the pred. I, too have a half dozen pairs of glasses ($$$$) with none giving me any degree of my normal clarity. And I will need cataract surgery soon. I started 19 mo ago on 20mg and was down to 8. After a recent flare I am back to 15. Very depressing because of my weight gain and hair loss. I think these things are all very common though.

  • Wow...same issues here...I started to lose my hair at 15mg..was on it for 3 months because of the gallbladder issue and my CRP was high..I came down very slowly and my hair stopped falling out at about 10mg..the texture has changed, but it looks much better now. Weight is not too bad..I workout 4x wk at the gym and walk 6 miles with a friend on the off days...also eat very plain food. I hope you continue to come dwn on your meds and things change for you. Good Luck

  • Hi I joined this forum over two years ago and since then have been coming off preds very slowly and am now down to 6 mg from 15 mg with ups and downs on the way .

    My eyes have become worse . I am short sited . Was diagnosed with glaucoma possible cause prednisalone November 15 by specialist , saw her last week she now says I have a pre condition to glaucoma and denies saying it had any thing to do with taking pred , but will have to stay on medication for ever . She also says I have very dry eyes and will have to take drops for that condition for ever more . Have catteracts forming which I had no problem with before pred .

    I am in late sixties and know these things happen as you get older , but it certainly appears to have happened all at once as soon as I started taking prednisalone .

    The specialist of whom I have no faith says I will have to keep changing my glasses to suit . I have to wear variophocals so at £ 700 a go it is no joking matter .

    There needs to be a lot more awareness into the side affects of prednisalone . my retirement was going to be spent doing craft of any nature . At present run an art group . But can no longer see well enough to draw , paint and struggling with tapestry making . Was a draughts woman all my working life . Since PMR took hold ( at the moment trying to come of pred because my ESR has always been around 24 to 30 at every every blood test ) and my doctor and I doubt I have PMR . Now have dreadful head pain since middle last year , have never been tested for GCA . Doctor doesn't think I have that . Sorry so pleased to see some one else has similar problems just had to rant .

    Good luck to you hope you soon get some satisfactory answers 💐

  • I paid nearly seven hundred pounds for glasses, then decided to try the internet. They were much cheaper and I was able to phone up (I have astigmatism) and discuss things and they were so helpful. I am really pleased and will continue to use them.

  • I never heard of getting them off the do you get a new script and get fitted for glasses.

  • You need to get your eyes tested and ask for the script. You can get up to four frames sent to you to try and postage is paid for you to return them, so no cost. You can do this as many times as you like. You then fill in a form of what you want.

  • Thanks...that's pretty neat..what is the website? I just got new glasses a few days ago, so I am good for a while.

  • I go to glasses direct, but I think there are several.

  • Thanks...I will check it out next time I need to change..

  • It is possible your pre-glaucoma is caused by prednisone and if that is the case it should get better as your dose reduces. You should be getting followup appointments every few months to monitor any eye pressure changes as your dose changes. I was diagnosed with increased ocular pressure, nearly glaucoma level, in January, but four months later the pressure was nearly down to my usual normal. Possibly it had been higher, when my dose was higher, but we'll never know and apparently no damage done.

  • I do go every 3 months to eye specialist...I have beginnings of cataracts not Glaucoma (not yet anyway) He calls it steroid cataracts. Have to wait and see as I hopefully get off this drug. Glad to hear no damage to your eye...

  • Thx for your reply...I agree with you about Pred. I had no problem with my eyes before Pred or anything else for that matter. Although my Dr.s do say the issues I am having is Pred related. I guess we have no choice. The glasses do get expensive. I hope you get some relief from the poor vision and they figure out exactly what is going on ..Good luck to you and hope you can get back to your crafts and continue to decrease your dosage successfully.

    This post was for Car00b above...don't know how it got down here..tried to delete and kept appearing here...sorry.

  • There's no logic to where replies appear on this forum! Drives me up the wall - and I still forget to say who I'm directing a response to. Although your email notification tells you if someone replies to you rather than just posting in the thread.

  • Hi Bert

    I too have had issues with my vision, there is a thread from yesterday re eyestrain & reading too.

    I'm myopic at -7.25 & -7.5 with +2 for reading, I have worn distance glasses since I was 12 years old.

    I've been on steroids for PMR for five years starting at 15mg & reducing but following a couple of flares had increased reducing doses of 30/20/15mg then back reducing by 1mg (that the simplistic version)

    But yes my eyes/vision were affected & I now have cataracts forming on each eye. My Optician made me a pair of middle distance glasses as after being on 30mg I found I couldn't see around me clearly, the distance was OK & I could read close up without glasses but everything close by was blurry, so they were a great help & I wore them a lot.

    Unfortunately, I had Cancer last year & the additional steroids (Dexamethasone) along side the Chemotherapy messed my vision up good n proper especially the distance & if I felt up to watching it even the TV was blurred!

    But now 9 months on following Chemo & reducing Prednisolone down to 5mg (but now back at 7mg) my vision is much as it was pre PMR apart from the Cataracts which at present don't bother me.

    I too am like a travelling optician when I go anywhere, reading glasses, prescription sunglasses and a couple of pairs of distance glasses depending on what I'm wearing! I also had to have a pair of smaller framed glasses made when I had the 'lovely swollen face' so I know & understand the frustration & the cost! 🤑🤑🤑

    I hope like me your vision settles down again & I too must make an appointment to get my eyes tested & oddly enough I have a new pair of glasses to pick up today 👓

    Take Care & Best Wishes 😎

  • Thx for your reply...your vision seemed the opposite of mine...I always needed glasses for just the opposite..for distance only...I just got new ones a few days ago and I got Transitional no need for sunglasses.. They do get pretty dark outside and go light in seconds indoors....With my fat face I got oversized glasses & sunglasses to cover it up,,LOL ...swelling is pretty much gone..but still no wrinkles, so just not sure. Glad to hear your doing well from cancer and continue to do so. Good luck to you.

  • Hello bert403. Sorry that you are having so many sight/glasses issues. I wore reading glasses from age 13, am now 69. On Pred. for 10 yrs for GCA.

    I think you will find a dramatic improvement once you have the cataract op. I have had both done, and whereas before I wore specs 24/7, now only use for reading. My Surgeon said I had developed cataracts due to prolonged use of cortisone, for asthma.Hope things improve soon.

  • Not yet ready for cataract surgery...glad to hear your vision has improved...May I ask why your need to be on Pred for 10yrs for GCA. Were you having difficulty tapering down. It just seems like so long compared to other posts I have been reading over the last 2 yrs. I wish you will and hope you get off the drug.

  • Am on 3mg Pred. at present. Neurologist wants tapering to 0 by Dec, but I am treading cautiously. For the past 3 years my eyesight has not changed, so my prescription the same. Optician says sight is good for my age. Found cataract ops terrific!

  • It hasn't been as bad as you have experienced but my vision has changed at intervals too - but not entirely due to pred. It also happened pre-pred with just PMR. As I always say - pred gets blamed for a lot of things of which it may be innocent!

    I have never gone for variofocals - perhaps because of my experiences with PMR. I just move my specs up and down my nose and originally had a very helpful optician who worked with me. The last time I had an eye test was to replace mislaid specs and the strange optician insisted I needed a stronger prescription for my left eye - nothing would change her mind and without specs I can see not a lot beyond the end of my nose so I had to give in! I have several pairs of specs, all single vision and use the one that is most comfortable for what I'm doing, The ones she provided are good - but reading things is not as easy as with the previous pair! Always causes a laugh though - and if all else fails, I take them off. i can readu anything then!

  • I have a pretty big collection now...but none of the others will work..all pregressive and drastic change...your nose trick won't work for me...Thx

  • Hi,

    Yep, vision changes have been part of my journey with PMR,/pred.

    I've been on pred since 2013, and have changed my lenses 4 times. About 18 months ago, after wearing my (then) newest glasses for just one week, my vision had changed enough that I needed another prescription. What I have come to accept ,is that vision change is one of my pred/PMR side effects. I have several pairs of "readers" which help me when my eyes are tired, or if I'm reading in bed. I have switched wearing my various prescription glasses from time to time, when it seems my vision is changed from yesterday.

    I am finally down to 1 mg pred, and holding for a month or so, before I try to get to Zero(!!!!). I'll let you know what happens when I finally get off pred!

    My most recent vision check showed my eyes had reverted to previous prescription, and my most current (at that time) lenses were too strong. (???)

    With no advice for you, but a little encouragement, I suggest you try to stay comfortable day -to -day. Get some "readers" if they help you, and don't fret too much.

    I am happy that You have your vision, and are taking care of it. The rest will work itself out.

    Warm regards, Purplecrow

  • Wow...I'm so excited for you to be at the end of this horror. I hope it continues to go smooth and you can get back to being normal again...Your comment gives me hope that soon this will be over...

    Readers won't work...I see perfect to read the tiniest changed to distant. So maybe mine will also go back before Pred. Wishing you all the best..

  • Hi Bert403

    I also have giant cell and have been on pred for 1 year now. My vision is constant changing and it is from the prednisone. I developed diabetes completely prednisone driven and my vision was very bad but as I got my blood sugars under control it improved but then I developed central serous retinopathy again from the prednisone. Even though I am only on 5 mg now it affects my eyes. I have not driven in a year. So what I am saying that for me I have to see a retinal specialist to deal with my eyes but my vision is not coming back now to where it was and until I am off pred I will still have issues. I am also on an immune sparing mediation called plaquinel and it can also cause eye problems. I see a retinal specialist and a ophthalmologist who deals with giant cell and my optometrist who keeps a close eye on things and refers me out when necessary. Yes my reading vision is great.....distance not so great.

    here are a few thoughts;

    getting your blood sugars tested is important

    maybe going on an immune sparing medication will help getting off the pred but it takes 3-6 months to work. I wish you all the best.


  • I hope you get everything under control...sorry to hear about the diabetes...just seems to complicate things... hopefully when your off this drug things will start to be better. Wishing you lots of good luck

  • Have been on prednisone 2 years. For the first year eyes were examined every 3 months. Always minor changes. I didn't bother with new glasses. I wear progressive lens for distance. The second year exams were every 6 months. Still waffling back and forth on prescribed lens. Still not investing in new glasses. Reading has never, been a problem, until recently. :-( Now my ability there is up and down. I hope to hold off on new lens until things settle down, but it does get frustrating at times.

  • Thx,,,I can't seem to hold out on getting new ones every 3-6 months...the eye strain gives me a headache being on the computer so much...don't need an extra headache with you have GCA. Good luck

  • Have yôu tried computer glasses? I have a pair and some days they work better for distance than my progressive lens. Computer glasses are intended for vision correction at arms length. Sounds crazy I'm sure, but that's just another mystery of PMR.

  • I had many computer glasses over the yrs when I was working..I have no problem without glasses on the computer or reading now...would get eye strain with glasses on computer...for now just need for distance...thanks

  • Hello. Since I was first diagnosed with PMR 10 years ago I have got used to periodic changes in my eyesight. I realise now that quite a lot of the trouble I was having was due to high blood sugars caused by the pred messing about with the curvature of my corneas. I used to be very longsighted but had laser surgery when I felt the PMR was burning out. I know it was risky but by that time I was desperate to do something about constantly feeling I had eyestrain. The surgery was a success in that I could throw away my thick specs, but it did make my dry eye worse, and I still have that. I also have diabetes, and so I can tell when my blood sugars are too high because my eyesight goes blurry. So far have been free of cataracts, and I really sympathise with people who develop cataracts or glaucoma worsened or caused by the steroids. Grr!

  • Thanks foe your reply...I hope things improve for you...It's been 2 yrs this week...from 60mg to 4 1/2 as of yesterday....just hoping to be off this by Jan or Feb...then maybe my eyes will decide what it is going to do. Good Luck to you!!

  • Hi Bert, was reassured to see you have reduced in two years. Well done. It worries me when I see people still on Pred 10 years later. Realise you have to do it slowly

  • The people who are on pred after so long are generally people with PMR. There is also a difference between men and women - mostly men are able to reduce and get off pred relatively easily while women often have more prolonged disease courses. Of course there are women who get off pred quickly and men who don't - but 5 years is more like the average then either 2 or 10.

  • Hi Bert, I am recently undergoing tests for gca and doc said I have it. I'm quite worried when I read things about steroid cataracts etc. Can I go blind from this? And having read your post I have a question answered, yes I do still go to opticians

  • Steroid cataracts happen occasionally but what happens quite often is that you were starting to develop cataracts anyway but hadn't noticed but the pred then made them progress faster than usual. They are easily dealt with - they operate to remove them.

  • That may be somewhat true, but to my knowledge I didn't have it before...the day I was diagnosed, I was immediately sent to a eye surgeon/specialist, who had done my biopsy a few days later..also said he does not remember me having it at that time...Oh well, it is what it is...just another thing to deal with.. thanks

  • Hi Nanalinboy....If you have GCA you need to be on high dosage of Pred...there are lots more knowledgeable people on this site to help answer your questions...I only know from my own experience in the last 2 yrs.. Cataracts can be operated and won't cause blindness. Good Luck..

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