I started treatment with Pred in June 2020. After a few ups and downs, I'm now at 7.5 reducing to 7 so I have taken in quite a bit of pred and face a further intake before (hopefully) the disease goes away.
My question is: is there a level of total amassed pred beyond which permanent harm is done to the body? If so, what actual harm would I experience?
There are many on here who will have taken or will take a lot more than you - for example those with GCA, LVV as well as PMR .
One of those being PMRpro who has had PMR for a very long time.
I had GCA and was on Pred for 4 and half years - starting at 80mg daily - have been off it now for nearly 7 tears, and can say I have no long term permanent damage despite taking the best part of 20,000mg during that time. But guessing most doctors would be horrified at that .
Have to say I feel better, and probably healthier than I was before I started GCA/Pred - and that’s accounting for being 13 years older from when I had my first GCA symptom, and being undiagnosed for 18 months.
The only difference is sight loss in one eye, but that was due to late diagnosis- not Pred.
I've been taking pred for nearly 14 years. In the last 3 years alone I have taken well over 15g. At present I am not aware of anything - no diabetes, no osteoporosis, no osteoarthritis which some claim is worsened by pred, only the very beginning of cataracts but I am 70 anyway. I gained weight, I lost weight, I could do with losing more weight! My skin was very thin but healed OK if it was cut and I also bruised quite a lot on my shins but I also take anticoagulant medication. For the last year I have been on Actemra and have reduced my pred dose down to 8mg/day from nearly 20mg and my skin has improved a lot and the bruising has stopped. There is a paper that says over 10g is an accumulated dose for concern - apparently not that much of a concern for me!
Thank you, PMRPro; as ever, your response is most welcome. I, too, suffer from massive bruising and cuts to my shins that take ages to heal but my biggest concern is in having such low reserves of energy and a general feeling of unsteadiness, particularly with my legs. For all I know, this could be age-related, though I recognise that I am on the edge of requiring the adrenals to wake up.
Good luck to you and a huge thankyou for all that you for our community.
I have had PMR for 7 years, followed by GCA-LVV for the past 4 years. My cumulative total of pred is around 14,500mg. I have no obvious adverse effects of pred and would be far worse off without it! I was found to have osteoporosis 6 months after starting pred, but will never know if I had it before the diagnosis. The quality of life that pred gives me is important. All the best.
I started Prednisolone approx 6 months earlier than you at a dose of 15mg with a ‘standard’ rheumatology tapering schedule. Like many I had issues and it wasn’t possible to follow the ‘get of Pred in 12 months’. So 3 1/2 years later I’m down to1.25mg and since I’ve thrown away my diaries I can only estimate a total dose of 8 to 10g. Not sure what damage it or the inflammation have done. Maybe eyes as I have the beginnings of “nuclear” cataracts. (Eye specialist said they’re not steroid induced, but both PMRPro and myself are surprised by the finding, ie nuclear not being steroid induced, but the eye surgeons should know.)
Rather than the problem of cumulative dose I tend to think of the quality of life steroids have provided. Without I was in agony!
Thanks, Exflex. I feel a little more relaxed about my total pred intake.
Best wishes.
I’ll just add this to settle your mind: My GP said below 5mg prednisolone does not cause permanent damage. That’s good to know and gives us peace of mind. But don’t go hurtling headlong to get down to 5 or less. When I got to 5mg I reduced at 0.5mg per month using DL’s taper.
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