Hi everyone. Well, I've spoken privately with a couple of ladies from the forum to get their advice. However, throwing it out there more broadly to everyone I may get to find out more. I remember reading a few posts recently about the effects that steroids can do to our eyes, but at the time I wan't experiencing any problems.
But now I am. For the past week or so I've noticed I now have swollen bags under my eyes and extremely blurry vision, much worse when I don't have my glasses on, also quite watery too. I have put that down to my allergies and with
all the pollen about at the moment, I'm not even venturing out into the garden at the moment. I've just taken a Cetizine antihistamine, seems to have helped with
the watering. There is no way that I'd get an appt (if the opticians are even open
right now) so any advice would be appreciate.
I received the email from my Rheumy's secretary this morning, after his telephone consultation with me last Friday evening. He recommends
my tapering as follows:
Originally from the 13/03/20 he started me on 40 mg for 2 weeks
on 28/03/20 he said to taper to 30 mg for another 2 weeks.
This will finish on 11/04/20 when I will drop to 20 mg
Stay on the 20 mg for 2 - 4 weeks, I can then judge how quick I need
to drop. Then down to 2.5 mg every 2 - 4 weeks until I get to 10 mg
then drop by 1 - 2 mg every month.
Does this sound reasonable to those of you that have been taking
Prednisone for a number of years. Also at what stage will I see
But for others, yes the symptoms can be Pred side effects, but would say it’s probably a combination of that and allergy.
Have replied also re reduction - as for when blurriness gets better, but that’s a bit like ‘how long is a piece of string’ question - probably no definitive answer, but thinking back mine was around 30mg - but others may well have different replies.
Not sure whether it equates to actual dose or length of time Pred been in system before your body gets acclimatised!
I remember 2-3 months in I felt really ‘Preddy’ with the side effects accumulating. My face and eyes had obviously been slowly changing but it felt like all at once I turned into rosy cheeked, puffy faced, panda eyed person who couldn’t see properly. The Pred affects the muscles that focus the eye and I found it worst going from one depth of field to another. My eyes also couldn’t cope with movement too well like walking along close to other objects eg a wooded trail was bad but open fields fine. My optician said it was par for the course and that there was no point in trying to change my glasses. I also had watery eyes due to irritation and was told that although my eyes watered, my tears film was very thin. I had to use false tear drops by day and thicker drops by night. They really helped. My eye pressures were checked every 3 months because Pred can cause an increase which must not go too far. It might be worth asking if any opticians will do this test alone; it takes minutes to do.
Interestingly people do seem to report an increase in allergies with reducing but normally under 10mg. I wonder if it is due to a suppressed histamine release causing an increase in histamine receptors followed by over production of histamine when the dose gets low enough, but that’s just my theory. I had a relief from hay fever at your levels.
Dropping and having a break of at least 2 weeks sounds sensible to me. For comparison I found the withdrawal too much so dropped by 5mg not 10mg.
I developed allergies I had never had any problem with before with PMR. They improved with pred - it is often used on allergy management - but whenever I got to a lower dose they reappeared.
I've suffered allergies for years and years, as far back as the eighties. That's when I started Eustachian Tube Dysfunction too.....tubes used to stick together and ears felt blocked all the time. Again, had to pay privately to get anything sorted. Ended up on a weeks steroid treatment over the years and several courses of antibiotics too. So antihistamines (second generation) for the elderly, or sounds better, Seniors. However, since getting Polymyalgia and being on steroids for a long time, no ETD...so that's a bonus. I think God only let's us cope with one ailment at a time...had I still been suffering from blocked ears I'm sure I've have put a gun to my head.....only jesting !!
Any chance you can speak to your optician - they might just have something to help........
BTW are your current glasses re-actolite rapide, if not change asap as Pred+ sunshine cause existing cataracts to grow and if you do not have them, it can encourage them to join the club.
Stay safe and hopefully you will turn the corner soon.
You may have developed dry eyes as a result of the higher dose of pred - that causes watery tears. I know it sounds mad but you aren't producing the usual thick tears to keep your eyes moist and healthy so the body produces lots more thinner tears. Most annoying! Some people do well with artificial tears
Steroids can cause all sorts of visual symptoms and disturbance. Long term use can cause or accelerate cataracts but that’s unlikely to be the problem at the moment. Allergies at this time of year are not uncommon and with this beautiful weather we’re having it’s possible, as you suggest, that you are experiencing a reaction to pollen or spores in the air. Dry eyes can be another side effect. Although they also occur more as we get older. Dry eyes can actually cause the eyes to produce more tears in response to the dryness. If the antihistamine has helped it is most likely an allergy. Are your puffy eyes worse in the mornings? If so sleeping slightly propped up can help. Unfortunately as you said it is highly unlikely that you would get an appointment with an optometrist now. If your sight becomes worse you can contact your local eye clinic as many are still seeing emergencies or can at least give advice.
This is probably very annoying, and I'm sure you are touching your eyes frequently.
I know you're a grown up, but let me remind you to make sure you wash you hands frequently...that will hopefully prevent you acquiring other things via that point of entry.
If you have Dry Eyes because of Dry Eye Syndrome , diagnosed by a Schirmer Test among other things , you very rarely produce tears at all.
If you do produce " tears" they are few and thickened and never amount to a sum which will flow down your face they aren't enough to be dabbed away and usually do no more than sink under your eyelids and drain into your punctal area ( tear ducts).
Your eyes can be inflamed but you rarely produce tears or enough fluid to ease them. I have actually poked myself in the eye accidentally and all my eyes did was burn more with the tiniest of fluid that felt like it steamed on the surface.
Another difference to Dry Eyes suffered normally and this Syndrome is that only a narrow area of the eyelids swells and gets very red , the whole eye area does not respond as normal.
If you have Dry Eyes from Inflammation or Allergy this is different . As Orpheus and Pro say this can cause constant eye watering , swollen eyelids and sacs below , scratched feeling on the eyes if you have been rubbing the eyes and general redness . It does sound like the blurry vision in your case is being added to by an allergy reaction , especially if you have felt relief from antihistamines.
Keep taking the antihistamines. Do not rub your eyes but give your eyes a wash with an eye bath regularly. Use a warm damp cloth over the eyes for relief.
Get Carmellose Gel tears , or the single use Celluvist eye drops to use through the day this reduces the irritation and swelling and cleans pollen etc from the eyes.
Vitapose A ointment is a gel to out on your eyes at night which you can buy or get on prescription , this replenishes the oils that you also lose from the eye from eye issues.
Reduce brightness of light , reduce screen time , get good sleep and do slow open and closing exercises of the eyelids after washing to help improve the problem.
Yes, Canary, I think that's my problem. I had an eye test not so long ago just before I was started on the 40 mg of prednisone. All good except for a tiny cataract, pressures were good. Today seems better than yesterday. I've just made my chart for tapering regime....seems I will be down to taking 1 mg by Dec 2020....I would have been on them for a year. I first started on 15 mg in Dec 2019 for PMR, once down to 8.5 mg my jaw became painful. So rheumy took no chances and upped to 40 mg for 2 weeks reducing 2 weekly by 10 mg. When I get to 25/04/20 I will be taking 12.5 for 2 weeks and when I get o 10 mg I will then taper by 1 mg per month. So by Dec this year hopefully I'll be successfully off them...fingers crossed.
Hi. I’m afraid I can’t give you any advice about your eyes but I’m writing in envy at the way you are being looked after. In the UK NHS, I have only seen a rheumatologist two and a half years ago when I was first diagnosed with PMR. At that time the rheumatologist told me that he wouldn’t normally see anyone with PMR as it’s usually taken care of by GPS. I was referred because my GP seemed to be nervous about diagnosing.
I have had no advice about tapering and have been working on reducing myself. I’ve gone from 15 to 10, where I’ve been for about 8 months as I didn’t realise I should be doing anything else. I get a phone consultation yearly with a random GP from my practice who asks me if I’m okay and I say yes.
I’m going to start tapering again soon when I’m over some shingles I’ve had.
I do hope your eye problem clears up. The only problems I’ve had on Pred have been some severe bouts of nausea and vomiting, for which my Omeprazole was doubled and some petechiae on my arms I occasionally get. But of course I don’t know what it’s doing to my bones. Nobody has suggested investigating that.
Hello, I take it your're in the UK too. Well, not surprised with your treatment. Back in Dec 2019 when my PMR started, my GP was treating me for Osteoarthritis. Lots of painkillers of which one was morphine, plus 1800 mg a day of Ibuprofen (something seniors should not take due to risk of stroke ) Finally got so fed up of the pain I took myself off to see a private GP at private hospital. She was lovely and immediately thought I had either Rheumatoid Arthritis or Polymyalgia Rheumatica. She took a full blood count and recommended I see their resident Rheumatologist, which I did a week later. A lovely young man who obviously works in the NHS too. Amazing the treatment one gets when paying for it. Another blood test taken, Urine sample and Chest X-ray and a thorough medical. My CRP (inflammation was up to 515) He started me on 15 mg of Prednisone. Those first 15 mg of Pred worked immediately and pain went. Problem was I didn't sleep for 16 nights on the stretch, so he reduced it to 10 mg. I stayed on that to 16 days (probably in retrospect not long enough) as by the time I'd tapered to 8.5 mg my jaw was painful. So went back to see him and as a safe-guard due to me only having the sight in one eye, not related to disease, he started me on 40 mg thinking I could have Giant Cell Arteritis (GCA) which can cause blindness if not treated promptly. I then got myself in the panic mode and sadly only just calming myself down. Then the Corona Virus reared it's ugly head to put us all in an anxiety state. Due to virus he told me he'd now do telephone consultations which he has done for the past two Friday evenings. His secretary has now emailed me with his regime for my tapering. Hopefully, by December this year I will be off the steroids...can live in hope !! By the way my last blood test my markers for ESR and CRP were back to normal.
How long have you been on steroids Mary ? My optician told me that cataracts, like grey hair come with age, we all get them. I'm not on Statins, or Blood Pressure meds. So feel it could be the steroids doing this. However, today is better than yesterday. Pollen could be a problem too at the moment as suffer severe allergies to dust and pollen. Also sinus issues too.
Oh dear, by the time I'm finished it will be a year. What strength did you stat on and finish on? At least cataracts can be operated on and such common surgery. Take care
You might have got age related cataracts but steroids do accelerate their growth. I’ve had one operated on and it was a complete success. The other isn’t bad enough yet.
Your history of symptoms since starting steroids are all too familiar with me and many more I know. They will improve as you get lower but don’t be in too much of a hurry to reduce to get that relief as it doesn’t work like that as you risk having to increase as a result . Viscous circle it can be.
Use eye drops daily even if the eyes improve. I use gel tears - get them on ‘script for very dry eye - didn’t know I had it until I was diagnosed with GCA as the eyes used to run - like you thought they couldn’t be dry!
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Nearly off steroids...
Tapering From 24mg
2 ? -eyes and weak legs
Continued discomfort 
