Eye appointment + update on prednisone taper

[29Pain00]

I am going for an eye appointment tomorrow, I know my vision has changed since a year ago. I don’t know if this is due to being a year older or having been diagnosed with PMR. Does anyone have any suggestions as to what I should ask my eye doctor? An update to my prednisone, I tried tapering recently from 9 to 8. After 5 days I had a flair. I went back to 9 but hadn’t improved after 5 days so went back to 10mg. After 4 days am starting to feel better, Thank you.

[Anniegal]

Prednisone definitely has caused me to need new glasses. I think a thorough exam including examining your retinas is called for. PMR is often linked with Giant Cell Arteritis and can impact vision. Hopefully you are seeing ophthalmologist. I wish you well. Do read up on GCA.

[29Pain00 in reply to Anniegal]

Thank you. Yes I am seeing an opthalmologist.

[Hidden]

Hi 29pain00, I had blurry vision from 15mg down to 8mg when it started clearing. I put off getting glasses until then to spare me the expense, but I did have eye checks for health in the meantime. Your eye Dr will know about GCA and the effects of steroids if they know their job. Just explain what your concerns are.

[29Pain00 in reply to Hidden]

Thank you, I just like to be prepared and ask the right questions.

[SheffieldJane]

It would be really good if your eye doctor has all the equipment, to have a complete eye check, including, for cataracts, peripheral vision, glaucoma, back of the eyes, dry eyes etc.

I replaced contact lenses, glasses, prescription sun glasses due to a sudden deterioration in vision. It cost a fortune! I might have been too quick off the mark because I think my vision is still shifting about.

Cataracts are something that we need to be aware of as Prednisalone can accelerate their development. We always need to be aware of any signs of GCA too - visual changes, headaches etc.

[Yellowbluebell]

My eyesight changed once a year without fail so as soon as pmr was diagnosed I booked a check up. At the pre eyesight tests I had a junior and asked if I could speak to a senior member of staff. As soon as u mentioned pmr he instructed junior to do certain extra tests and hovered around and finally gave me the all clear. He knew about pmr and GCA and was more than happy to do the extra checks to make sure things were normal. Just make sure you let s senior member of staff know about pmr/gca and if they are decent opticians they will know what things to look out for. If they dont then find a new optician immediately. Good luck.YBB

[HeronNS]

My (experienced) ophthalmologist told me more about pred and I would have learned far more from him that I ever did from my GP if I hadn't already gleaned the knowledge from my own reading. The ophthalmologists are the ones who see the glaucoma side effects from pred and results of GCA and are very knowledgeable about prednisone. Mine said GCA needed to be treated as seriously as a stroke. My GP, on the other hand, never ever has mentioned GCA to me and it was I who headed to the eye doctor to have my eyes checked for signs, as well as for glaucoma - and I did indeed have increased ocular pressure until my pred dose came down to about 4 or 5. He still sees me more often than he would if I didn't have PMR and wasn't on pred.

[jinasc]

Make sure you get Reactolite Rapide lens. Pred and Sun do not get on and it can and does cause cataracts, if existing to grow, on them to start.

If you drive a specs for night time driving.

My Optician gave me both and I had the beginning off cataracts and that was nerly 13 years ago and have hardly moved at all.

[paulus65]

It's my understanding (and experience) that pred can lead to steroid-induced diabetes, and one of the side effects of raised blood sugar is changes in vision.

Make sure you get appropriate blood tests as well as new glasses.

[Hidden in reply to paulus65]

That is why I didn't change my glasses prescription until I got down to 8mg when blurred vision settled. If I had the money I may have, but working on low carb high fat diet kept the blurred vision to short periods and it was mainly with reading it effected me. Oh and the insulin I had to start using after 17yrs of type2 diabetes controlled by diet and pills.

[PMRpro Ambassador in reply to Hidden]

I just moved my specs up and down my nose!!!!

[Hidden in reply to PMRpro]

I found my reading part of my varifocal worked well driving but for reading I used normal glasses with +3 cheap reading glasses. So effectively I either moved my neck up and down or the spec on my nose. 🤓

[Purplecrow in reply to PMRpro]

🤣 i fumbled about and discovered I could use 2 sets of readers at same time, to get strong enough for bedtime reading ( when I had left my prescription lenses elsewhere). 🤓 just sayin'...

[Sniggi]

Hi Annigal,

One of the many side effects of the Prednisilone is (apparently!) cataracts. I do have the beginnings of cataracts and needed to increase my glasses prescription. Also, while I was on the meds, I tried to have contact lenses but my eyes were too dry and there was also a hardening of the cornea.

So, now I’m off I can wear contact lenses and am having the cataracts monitored by the ophthalmologist every 6-12 months who also looks for signs of glaucoma and state of the retinas.

Good luck,

Sniggi

[gifford7]

Polycarbonate lenses are impact resistant and naturally block UV.

[Biba5]

i am on 60mg day, seeing rheumatologist this week. Biopsies neg, told they can have 40% false neg. Need to see optician, hoping I need new prescription, but worried about eyes since since diagnosed. The Mycobacterium Avium leading to removal of right upper lung lobe in february is now on follow up every 3 months xrays. Am having trouble sleeping, exhausted . Lost 20kgs, but appetite’s improving and have gained 6kg. Such a high dose of prednisone worries me, anyone else on such high dose?

[PMRpro Ambassador in reply to Biba5]

It really isn't uncommon at the start of a GCA diagnosis - it is infinitely preferable to the risk of losing your sight which is what it is to prevent. You won't be on it for ever, once they are confident the inflammation is reduced and your sight is no longer at risk the dose will be tapered slowly.

This post is 4 years old so if you want to hear from more than DorsetLady and me you would be better posting it as a new thread. Only people who "follow" a thread will be told you have replied and very few do.

[Biba5 in reply to PMRpro]

I phoned my optician of 25 years. Am due for exam apparently. And I have a myobium gland issue, so will get some eyedrops. Also have start of catarracts at last exam, 12 months ago. I have an appointment for next week, by which time I will have more info after my rheumatologist consult this week. I will also call into my GP and ask nurse to do a diabetes test. So much to learn. Thank you for advice, so helpful to hear from people going through same thing.

While I’m here, since starting 60mg day prednisone on 4th April, I seem to have too much energy in middle of night. From total exhaustion before diagnosis, and struggling to get out of bed by midday, I find myself waking earlier and earlier, 6am, 5.25am, 4am, 3.15am and yesterday 2.15am! I have to get up and do stuff, have a newly sorted pantry, gardening in the dark, sorting things to donate, and who has poached eggs on toast at 3am! After weeks of this, I feel totally jetlagged, as though returned to NZ on long haul flight, without the vacation 😫… I guess this is all due to the steroids?

Also feel shaky in the morning, hands at first, now internally as well. This was happening for last year or so (Mother had Parkinson’s Disease so was very scary first time it happened, doctor assured me it wasn’t PD). It is much worse since the drugs. Sometimes it happens at random time in day. Dropped and broke 2 pieces of china yesterday! Is this symptom of GCA?

Thanks if you read this far ❤️

[PMRpro Ambassador in reply to Biba5]

I always read everything! Even if I don't reply ...

Beware the false energy that the high dose pred gives you - no wonder you are exhausted. I'm not the best person to advise there though as I was never on high enough pred to stop me sleeping. Maybe someone else can make suggestions.

[Biba5 in reply to PMRpro]

thank you. The exhaustion has floored me today. It’s so good to get advice from others on this journey

[Bluey-1 in reply to Biba5]

It’s the steroids. I was like that on 60 mg without any energy at all though, everything felt like lead. Wired for hours at night and I had the shakes. It will get better. It’ll be a year for me next month since diagnosis and I’ve tapered well slowly with the one flare between 20-17.5 mg.

[Bluey-1]

…should have said, am tapering well so far….

[Biba5 in reply to Bluey-1]

May I ask what have you tapered to after 11 months? Iknow we are all different but I haven’t met many starting on high dose. Consultant said it would be 9-12 months

[PMRpro Ambassador in reply to Biba5]

"Consultant said it would be 9-12 months"What - from start to finish? GCA or PMR - either way, in his dreams!

[Biba5 in reply to PMRpro]

i am choosing my battles… steroids, for however long, preferable to blindness / stroke

[PMRpro Ambassador in reply to Biba5]

Quite!

[Bluey-1 in reply to Biba5]

Click on my bio. My current daily dose is 8 mg from the 23rd April. As advised on here I’ve drastically adjusted my previous busy lifestyle, take a lot of rest but gentle exercise /short walks when able and eat well to keep a healthy weight. I’m fortunately retired. Who knows how things will be going forward? Strange illness and we are all different. As has been emphasised here, acceptance is essential, something I found very hard during the first six months, especially when on high pred doses with the dreadful side effects I suffered, I was very low at one point.