I'm on a lot of pred, dont see taper in near future

[missmylefteye]

Hi,all, wanted to ask about others pred doses. i started 60mg on sept 3, for 2 weeks, then 40mg, 3 days, felt bad, put up to 50mg, about 2 weeks, tapered to 40mg, felt horrible pulsating, couldnt do anything much, but stuck with it, 2-3 weeks, then 30mg for two days, even nworse, put myself back on 40 for a few days, then thank God, my PA put me back upti 60mg, in a few days it will be another 2 weeks on 60mg. i still have some pulsating & arteries feel 'clogged'. My eyes still bother at this level also. have others been on these level doses for months like i have, or not? thx, mmle

[DorsetLady PMRGCAuk volunteer]

Hi mmle,

I started at 80mg - right eye already lost, dose to ensure left eye okay - on for 2 weeks. Specialist happy that eye okay, reduced to 60mg.

Reduced then at monthly periods, each time following a blood test, and discussion with GP (occasionally Ophthamologist) as follows - 55, 50, 40, 30, 25, 20. Then following discussion with Rheumy (bit late in day!) again monthly to 17.5 & 15mg.

That took a total of 7.5 months, so in answer to your question - yes!

And yes, it was a pretty horrible time, Pred side effects abounding and coming to terms with mono-sightedness, as you know. But, on the plus side - no flares!

As we're always saying, you are in it for the long haul. Unfortunately, no matter how much you wish, pray, beg, throw your toys out the pram - there is no hurrying GCA or PMR.

I took me four and a half years to get from 80mg to zero, maybe I could have done it quicker I shall never know, but one thing I do know I felt a damned sight worse during those 18months prior to diagnosis and Pred than I did all the years on it.

Stick with it, you will get there👍

[missmylefteye in reply to DorsetLady]

Thx! i am finally set up to get a biopsy for gca in two weeks. i also have appt with a new neurologist soon. my biggest worry is my right eye, acuity ok, but tires easily & more & more shimmering & shadows in FOV like my left eye.

[missmylefteye in reply to missmylefteye]

I dont see tapering the pred for awhile, wondering if i should ask to try the 80mg

[DorsetLady PMRGCAuk volunteer in reply to missmylefteye]

That's a high dose. Only reason I was on it was to preserve sight in remaining eye. Right eye optic nerve already irreparably damaged, doctors not convinced that other eye was safe at that time. Fortunately after a fortnight they were agreed the immediate danger was over.

Guess they probably wouldn't be too keen to increase anymore. However, if you feel things are getting any worse then maybe a visit to Emergency Room is called for. Do hope not.

[PMRpro Ambassador in reply to missmylefteye]

Is there really any point in having the biopsy? It is felt that every week on a high dose of pred reduces the likelihood of a positive result by 10% - and only about half are positive anyway. You'll have been on high dose pred for 10 weeks by then. Ask them if it will change the way they treat you.

But they tried to reduce the dose far too soon - you should stay at the starting dose for 4 weeks or until the symptoms have resolved before even thinking of reducing. And the very high doses are used to protect the other eye - if you are having problems with it you really should ask them about that. Possibly even more than 80mg and as an infusion.

[missmylefteye in reply to PMRpro]

Oh, you make some good points here. i'm so burned out, really think a diagnosis woukd help. maybe another test like a sonogram?

[PMRpro Ambassador in reply to missmylefteye]

The symptoms are the king in both GCA and PMR. The other options aren't conclusive enough - except when the TAB is positive. Then it is 100% certainty. But otherwise you have to trust the symptoms. Your loss of vision in one eye is - I would have thought - fairly conclusive.

And I'm not sure what a retinal specialist will be able to do - unless the GCA is affecting the retina. Rare, but it happens. But it needs to be soon - so be insistent about your increasing symptoms.

[missmylefteye in reply to PMRpro]

I had one infusion in the ER about a month ago. Saw opthomalogist many times, he thinks my right eye is stable, but recently, i dont think it is. he is going to send me to a retinal specialist in case that would help.

[missmylefteye in reply to PMRpro]

There is only one doctor ive seen who leans towards GCA, the resident i saw last week in neuro-opthamology. im guessing he pushed for the biopsy. His boss, the dean of the school, says i have a crowded optic nerve & am over 50, and thats why it happened. i feel like there would be a lot more middle aged women with only one good eye if it was that easy for this to happen. but he did agree to the test, i was hoping it would help, sounds like not so likely now from what you are telling me. besides my eye, i have so many other symptoms, so many like GCA & PMR. Down on 40mg pred i literally felt i was dying, the pain and pulsating in my temple, over ear and throat felt like anything i tried to do, i had to stop and sit down. i had a lot of weird attacks, left side of my face was numb, i felt a lot of pressure on my brain. many other issues. i was an engineer & professor, and not the best communicator, particularly with doctors. im so frustrated at my incompetence & i feel neglected and abused by some of the specialists i have seen.

[knit1purl2 in reply to missmylefteye]

I'm in the U.S. My Neuro-opthmalogist is the one who diagnosed my GCA. I had been to doctors almost every day for two weeks as I knew something was wrong. Ophthalmologist was so sure it was myastenia gravis. But after two months of problems, neurologist sent me to Wills Eye Hospital in Philadelphia. Dr Mark Moster took blood work and showed it was not myastenia. Scheduled a TAB for a week later which came back positive. Of course, I had not been given the prednisone until the diagnosis was made.

[PMRpro Ambassador in reply to missmylefteye]

Yes, hear what you are saying. It might get a result but I am doubtful - which is unfortunate. Although it is possible (not a histopathologist so I'm not sure) that there would be left-over signs of past inflammation.

Being on such a high dose of pred means a PET scan wouldn't be reliable either - it probably wouldn't show anything in the head anyway but it would have shown if there was inflammation elsewhere since GCA can be all over the place. Did you have raised ESR/CRP results? I can't remember. Because if you did - his crowded optic nerve theory is less likely. Inflammation is inflammation - there's no getting away from that.

[missmylefteye in reply to missmylefteye]

Thx both of you for your input. more docs do think i am in this gca category at least then i mentioned inpost above: my primary care doc & the pa in his group that upped my pred a few weeks ago. the opthamalogist i have seen since the start of this hayride, he diagnosed idiopathic auto-immune, and PMR is one he suspects. both my esr & crp are normal. always the case for me, despite ten years of arthritis in my fingers, a little neck arthritis & bone on bone arthritis in my left tmj (jaw doc says unheard of outside of auto-immune).

One of my big issues getting in the way as i try tomake headway is that both my eyes are horrendously light sensitive. my husband drove me toa procedure today, and despite my dark brimmed hat & wrap around dark sunglasses, i had to put my jacket over my head to make the drive tolerable.

[missmylefteye in reply to missmylefteye]

I had the worst papillodema that my main opthamalogist had ever seen. what is the TAB test again?