I'm a GCA patient since AUG 2022, having started with 60 MG PRED and decreased slowly to 20 MG PRED at this time. Ever since starting the PRED, I have noticed that my vision is fuzzy, blurry, etc. I thought it was a side effect of the PRED.
But after slowly decreasing PRED for 7 months, my vision is only getting worse. My eyes are always puffy, especially by the end of the day. The puffiness seems to be related to how fatigued I am -- the more fatigued the more puffy are the eyes. And the fuzzy, blurry condition is not getting better. I would have thought that my vision would be improving if the cause was related to PRED usage. And my double vision problems are not getting better either (when I tilt my head from side to side).
I saw my ophthalmologist about a month ago and he saw nothing to be alarmed about. But something is not right and I'm not sure what to do about it.
Any advice?
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montebello
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If your ophthalmologist didn’t find anything to be concerned about, then not sure we can advise…but maybe speak to them and ask if there are any drops he can recommend to reduce the puffiness - sounds like it’s related to tiredness [of the eyes] or look on line for any remedies. Maybe start with a cold compress to see if that helps - and reduce your salt intake.
I'm also reducing from 60 mg. Started Jan. 21/23. Now down to 45 mg. as GCA was not present, in biopsy or by ophthamologist exam. I do have PMR. My vision is also "fuzzy at times". I use eye drops many times throughout the day (preservative free). Puffy bags in the corners of my eyes, which I never had before. It could be the bags affecting my vision. They tend to "weigh the lids down". This is the only way I can describe it...and then I have "moon cheeks" pushing up (which also push down on my mouth, making it seem like my lips don't want to open to speak). Moon Face and neck ring have increased with increased Pred. Still finding ways to cut carbs. My salt intake is minimal to none. Can't wait to reduce the Pred dose even further. This Sunday I will drop to 40 mg. All the best with this journey.
My salt intake is just about zero also, but I confess that I'm not doing too well in cutting the carbs -- and my stomach is showing the results of that. When last saw my GP, the first thing he said was "wow, look at that stomach -- that's new!" I haven't gained a lot of weigh -- it's simply redistributed itself.
Me too! It's as if it has all been pushed up. I feel like a little Buddha. That was a little insensitive of your GP. I also have trouble with the carbs. I'm a sweetaholic for sure! But on this high dose of Pred it does elevate the glucose so I have to do it! We got this.
I’m in Ontario (formerly lived in N.B. for a decade), and would say our provincial health care system is a “mixed bag”, sometimes depending what region you live in. At one point I was on a 2+ year waiting list for a knee replacement, while a friend North of me managed to only wait a few months and got both replaced (separately), in a timely fashion. I can attest to some horrible rheumatologists but also a few good ones. I’m grateful to have a fantastic GP.
Pred made me terribly fatigued and affected my vision in that my eye muscles struggled to adjust to changes in depth of field. As the dose changed so did my eyes which didn’t settle until on very low doses. Could the pain between your shoulder blades be stomach inflammation? I found the Pred effect tended to accumulate and only fell away to any great degree under 10mg.
Thank you. This is reassuring. We seem to be in the same boat. I can't WAIT to get below 10 MG, although that'll be a while with the slow taper. Thanks again.
As for puffy eyes, salt had a big effect on mine to the point I had to have very little so no processed foods at all. The tendency to puffiness again was very prominent and slowly went under 10mg but not completely for some time after I stopped. We are all different but my point is that as it is par for the course and know that it does go away one day just not at the speed we want.
Did they mention dry eyes? That is a common reason for the symptoms you describe - mine suddenly got worse last summer and it was purely dry eyes, 2x daily eye drops have improved things a lot and I notice when I have forgotten.
And maybe blepharitis that isn't fitting with the expected symptoms is a possibility.
I was just thinking, could it be eye mites? The older you get, the more likely you get lots of them, and they can irritate your eyes. They can cause all sorts of eye irritations. They are tiny bugs that live around your eyes. nvisioncenters.com/conditio...
Since eyelash mites are microscopic, you can’t see them, but you can identify symptoms they are causing. Symptoms of eyelash mites include itchiness, redness, dry eye, crusty and sticky lashes, blurry vision, and scaly or rough patches of skin around the eyes.
Problems associated with eyelash mites are caused by microscopic mites. They occur naturally on hair follicles and feed on dead skin cells on your body. Most people have a small amount of Demodex on their skin and don’t know it.
People with both good and poor hygiene have mites on their skin, as they are a naturally occurring organism. The prevalence of Demodex mites increases, however, with age and poor hygiene. Studies have found that everyone over the age of 70 has Demodex mites, while 84 percent of people over the age of 60 have the mites.
Demodex mites can be harmful or helpful to your skin, depending on their concentrations. In small amounts, as they typically naturally occur, the mites help rid your skin of dead cells and waste, and they contribute to a healthy human microbiome. If too many eyelash mites are present, they can lead to skin and eye complications that require proper treatment.
Are Eyelash Mites Dangerous?
Eyelash mites are known to cause a condition called Demodex blepharitis. It is a common condition that refers to inflammation of the eyelids. There are various causes of blepharitis, one of which is eyelash mite infestation.
Thanks for this. Something else to consider, although for me my vision and puffy eyes get worse as the day progresses -- seems related to overall tiredness. But I'll surely keep those mites in mind.
I have had blurry vision from the very beginning of my LVV/Pred journey and it remains.I have floaters that can often cover my eyes completely and other times just interfere. My optician told me they would take a year but I am 2 1/2 years in and no change. I also have very dry eyes so have to keep on top of those.
My sight has changed and I now have to wear glasses for close things which I have never had to do and it's a pain as I have to constantly take them off and on.
I'm assuming this is all down to the condition on top of the pred, but of course will never know until I'm off pred I guess.
I have a similar problem but it seems more sleep related, at least in my case. I have sleep apnea and don't get much deep sleep. Usually it's zero. My grand daughters bought me a Fitbit watch to track sleep, and at first it worked great, but for the watch to work properly you need 3 hours of uninterrupted sleep. It has not recorded in a month and my eyes are squinting, sensitive to light( I wear sunglasses most of the day) blurred vision, etc...I remember when I did get at least an hour of deep sleep, I felt great and the eye issue was almost gone. My ophthalmologist said the same as yours, except to use eye drops. Hope this helps...
Thanks Joseph. i don't get much sleep either. No sleep apnea, but my watch tells me I get 2 hours deep sleep a night. I usually take an hour nap during the day also. Thanks again
One of the symptoms of type2 diabetes is problems with vision. Steroid-induced diabetes is a known side-effect of taking pred. Might be worth having your blood sugar checked.
Hi Montebello, I too have GCA, further on with reduction than you, (Pred since August 2020) but still, blurry, puffy eyes … and as others have said, little bags at the outside edges which I’ve never had before… and now beginning 3 weeks at 4 and a half mgs. (Reducing half a mg every three weeks). I’ve been told by the hospital ophthalmology department that this is about it, now, and not to expect any improvement.
However, swapping topics half way through my post, for the past 6 weeks or so I have developed quite severe hip and thigh pain, now arms are joining in - everything I’ve read on here suggested adrenal insufficiency, and sure enough, blood tests this week confirm low cortisol. I’ve emailed the hospital’s rheumatology department as not due to see consultant for another three weeks …. But basically, is there anything I can do? Or is this just a phase to be weathered? The other blood tests were ok, apparently, so I don’t think I’m just developing a side order of PMR…
If you’re still reading, Montebello, very best luck with the eyes, eye drops are indeed comforting - and apologies for going off topic, but I’m rather preoccupied by my sudden painful mobility.
It is a phase to be weathered and not surprising at all that the cortisol is low at 4.5mg.
But unlike you - MY suspicion is it could well be a side order of PMR. Just because the markers aren;t raised doesn't mean it isn't. They can lag a long way behind the symptoms appearing and symptoms always trump lab results.
yes, I’ve heard you say that before…oh blimey. Now what? You and DL know so much more than I…so it can be a GCA flare and present as joint and muscle pain? ie PMR… because I haven’t had this before …?
PMR is a common symptom of GCA. You may not have noticed it before the GCA diagnosis, it obviously isn't highly active if you have got this low before it "reappeared" and the doses used for GCA are always well above what is needed to control PMR symptoms. It's the same procedure as for GCA: enough pred to keep the symptoms under control, But I think it is something that has to be considered. Maybe start another thread asking if anyone else with GCA had a similar experience.
Agree with PMRpro- sounds PMR related as much as adrenals honestly…so do monitor things and certainly if it seems to be getting worse you may need to treat as a flare.
This all sounds very familiar montebello, I’m 74 and started on 70mg of Prednisolone a year ago… bags under my eyes, blurry vision, fatigue comes and goes. The doctor and opthalmologist also diagnosed early cataracts, dry eyes and blepharitis. Regular use of eye drops for the dry eyes, and cleaning the eyelashes has certainly eased my vision problems. I am now down to 8mg Pred a day which I think has helped to reduce the “heavy” feeling I have in my eyes.
I hope you see some improvement as your dosage tapers further.
Thank you DaveGCA. Sounds like there's hope. I have started eyedrops and yes, they do seem to help a bit. As for blepharitis, the ophthalmologist didn't mention it -- and the eyelids don't seem inflamed, just puffy -- especially at the end of the day. My wife keeps telling me "oh my goodness you look so tired!"
Ha ha! Yes I recognise that comment too. I forgot to mention that I am also taking Leflumonide (20mg at present) to safely speed up the tapering of the Prednisolone.
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