Incredible Pred Tale

[diana1998]

OH's cousin is over from Virginia aged 77. He told me he had pmr January 2022 and was started on 60mg of pred. Gosh! Unbelievably high dose. Reduced fast and was off within a year, no problem. Double Gosh! Then June 23 he used some contaminated eye drops from India and ended up with GCA. He had the biopsy as he was losing his sight (which is now fine).Back on 60mg and now down to 2mg already. He expects to be totally pred free this summer.

I can't believe his experience and he can't believe mine as still on 2mg after 8 years!

I have never heard of a case like his but guess these success stories aren't usually posted.

Very uplifting but as I told him, he is a man so be thankful.

[PMRpro Ambassador]

It isn't an unusually high dose really - 40mg is the basic starting dose for uncomplicated GCA where there are symptoms but none of the red flag ones of visual symptoms and jaw claudication in particular. Anyone with those needs 60mg and possibly more. Some doctors start with a 3-day pulse therapy using 1000mg per day as an infusion (yes, one thousand mg!) before reducing to 60mg/day to start the taper, and in fact even using that approach it has been shown that this can result in a lower accumulated dose over time.

It sounds a very different experience - but in fact it does illustrate that GCA doesn't necessarily just go away because you are off pred, The potential for your immune system to go haywire again remains and it can all start up again after a year or two. Maybe the same applies to many more but they have not managed to get off pred in between flares, and anyone who has GCA that includes PMR as a symptom seems to have a harder time. Then there is the adrenal question - someone only on pred for a year is likely to have fewer problems there as well.

[diana1998 in reply to PMRpro]

All very interesting. I told him people here were put on 15-25 mg for pmr. Not 60mg. But he did reduce in big steps very fast.

[SnazzyD]

Some people’s autoimmune activity abates more quickly than others. In this case though I would question that it had gone completely at the first zero because an infection set it off again. As to the success of the forthcoming zero, it remains to be seen if they are ready or whether the next little knock will send them back up again. I have to say I would do anything to avoid going back to 60mg again including a longer, steadier taper. Anyway, good luck to them.

[diana1998 in reply to SnazzyD]

I agree. I did say to him he tapered too fast for the pmr but he said he was fine off pred for 6 months before GCA hit last June. I cautioned him re dropping from 2mg to zero in 2 months now but I noticed he cocked a deaf 'un and didn't want advice. Hmmm... He has no side effects when on pred at lower doses, no fatigue like me. Lucky him I say.

[PMRpro Ambassador in reply to diana1998]

It seems common for the USA to go OTT with dose for PMR and maybe he had some red flags that encouraged it. But it always seem strange given how paranoid they then become about pred at all. Maybe if they could tell the difference they'd be less scared of pred

Six months is a common time to relapse - very low disease activity creating a tiny amount of inflammation that as little as 1/2mg will suppress can take that long to build up to a level that causes symptoms. Quite a few on the forum with a similar PMR story to tell.

Can't say what I'm thinking about that response on here!

[diana1998 in reply to PMRpro]

😂🤣

[DorsetLady PMRGCAuk volunteer in reply to diana1998]

6 months is a very usual time for the disease to re-surface.. or in his case surface.. be interesting to see what happens in another 6 or 7 months….

.. and first time around he may well have had GCA but didn’t realise it…there’s obviously a reason his doctors started him on such a high dose.

[diana1998 in reply to DorsetLady]

Going to keep in touch with him on the subject!

[PMRpro Ambassador in reply to diana1998]

Do tell when you find out ...

[diana1998 in reply to diana1998]

Will do. Watch this space in June!