PMR, Pred or my eyes?

[Decsgran]

I’m currently on 8mg of pred and into my 3rd week at this dose. This last week I’ve felt awful! Very disoriented and spaced out. Not really dizzy though. I’ve had some disorientation since I had cataracts removed four weeks ago, which consultant said could last up to three months due to the big change in refraction in my eyes. But this week has been more than that. I’ve checked BP which is fine and so is heart rate according to Fitbit, so is it PMR or pred or something else?

[SnazzyD]

My father-in-law struggled with feeling squiffy after his cataracts both times. You may also be coming into the low adrenal zone where the artificial steroid (Pred) is possibly not quite enough for your daily needs. This means your natural steroid production needs to make up the difference. At 8mg and sometimes down to 5mg the Pred dose might still be enough to make the adrenal glands think they don’t need to work. Slow and strays down the dose ladder usually rights this but it can be awfully tiring. If you look in the FAQ’s there are notes from DL about this. It can be a bit disappointing to suddenly feel washed out and it right at this stage but it is common.

[PMRpro Ambassador]

I would suspect it may be a bit adrenals not catching up with the reduction - particularly since you HAVE had a stressful experience.But your visual centre is probably still learning to cope with the changes in what it is being sent. And that can have strange effects!

[Decsgran in reply to PMRpro]

The brain is still trying to catch up with changes in vision! I’ve worn glasses for 64 years and now only need them to read, so am doing exactly the opposite as I’ve been doing!

[prunus in reply to Decsgran]

Like you I had worn glasses for a similar amount of time. Were you myopic? Even now years later I still miss the good near vision I had. It took me a long time for things to settle.

Someone mentioned a year to me. So be patient with yourself and all the best.

[PMRpro Ambassador in reply to Decsgran]

I've had a similar experience years ago with new glasses where one lens had been put in wrong, very slightly off centre, by a German optician. Just couldn't manage! My brilliant UK optician used the lenses but put them in a much smaller frame so he could cut them down right. Now me - yes, glasses for 62 years, short sighted but now losing accommodation too so reading is still OK but anything fiddly isn't. I want cataracts!!! Then I could have just reading specs and not need any otherwise

[DorsetLady PMRGCAuk volunteer]

As mentioned by others, maybe have a look at this -

healthunlocked.com/pmrgcauk...

[Decsgran]

It certainly could be the adrenals but I think also some of it could be due to sugar spikes after lunch even though I try to have no carbs then. I’m due to drop to 7mg next week but maybe I should have an extra week on 8mg.

[Longtimer in reply to Decsgran]

8mg to 7 would be too much of a drop for me!....I am on 7mg....and I have vision/balance dizzy problems.....this has worsened because of my adrenals struggling...take it slow....

[AyJayBass]

I had cataracts done in both eyes 8 years ago, many years before PMR thankfully. I started on 15mg Pred in March after diagnosis. Since 9mg I have been reducing by ½mg at a time using a speeded up version of Dorset Lady's taper plan (3 weeks instead of 5). I have just had a week on 7mg and the past 2 days I have been feeling pretty tired and a bit achy. Maybe I have hit the "wake up Adrenals" dose. I'm going to have another week or two at 7mg and then start a 5 week taper plan to get to 6½mg.

[Hidden]

I've had trouble with my eyes ever since starting Pred almost 2 yrs ago. Seemed to improve when I managed to get down to 6.5mg...unfortunately, slight flare up happened so now back up to higher dose again, and will only reduce by 0.5 mg per month again. My eyes feel heavy as though I've been crying for a month, they water too, just don't feel nice at all. My optician said when I mentioned within an hour of taking pred every morning my eyes are weird, he said nothing to do with it....definitely is !!