My wife for GCA ! Inflammation, is on prednisone from last 10 months at present she is on 10 mg from last 3 months , she get flare heaviness in ear , eye , head , when she , try to go down to 9 mg ,she also tried,alternate dosing 10 -9 but failed two time . I do not understand why this 10 mg dose so critical for many sufferers ? Can she stay on 10 mg as maintenance dose for long time ?
Pl advices.
If she doesn't need it for symptom control she really should try to go lower as long term steroids aren't advisable for several reasons.
Look at the FAQs at the tapering section. There are slowed tapers there that may help her get lower. She should maybe also try just a 1/2mg reduction. She will also have to put up with some discomfort for a while - it isn't always easy and straightforward.
Hi Rajuguide,
I have PMR and it took me almost a year to reduce from 10mgs of prednisolone down to 6mg. It's taken me a further 3months to taper very slowly down to 5mgs, dropping by ½mg at a time.
With each taper, I initially experience a period of withdrawal symptoms that include headaches, head pains, tired eyes, fatigue, temporary reduction in ability to concentrate and poor memory. This passes after a week to 10days and then everything settles down again.
It may be that your wife is experiencing similar, but it's always important to have any symptoms that could be a cause for concern, checked out by a medical professional before drawing any conclusions.
Actually to be at 10 mg after only ten months for GCA is pretty good. However trying a slow taper in smaller steps is helpful in that it helps to avoid withdrawal symptoms. These symptoms can be so similar to the symptoms of the disease it can be confusing. If a slow taper in half mg steps still doesn't help then she probably still needs the current dose and should just try tapering again in a few weeks. You can find the slow taper methods patients have developed here:
It was the strategy of a well respected Rheumatologist ( was it Professor Hughes?) to keep his patients on 10 mgs of Pred for one year before beginning to taper. I know that this decision would have suited how I feel day to day. I am currently on sick day rules at my Endocrinologist advice and this entails adding 5 mgs to my 6 mgs dose. This has cleared a wide variety of seemingly unconnected symptoms and lifted my mood thereby improving my ability to cope. I am sleeping a lot but I do have a virus of some kind, including a measles type rash on my cheeks and a cold and cough.This causes anxiety because Pred is now contributing to high blood pressure, cholesterol and raised blood pressure and the attendant stubborn weight gain.
No - not Rod Hughes - he keeps patients at 5mg for up to 9 months before continuing the taper and that is to encourage adrenal function to catch up. The 10mg for a year is part of the basic approach to tapering to identify the right dose in Prof Veronica Quick's paper (written as a student with Prof Kirwan in Bristol) about management of PMR at the start of the journey. It is two different sections of the PMR journey,
Thanks for the reminder. PMR alone was much simpler for me to manage, everything was quite logical with Prednisalone. I just slid down to 7 mgs, got stuck for a year, bumped down to 3 mgs, got the GCA/LVV diagnosis, was put on 40 mgs then kind of lost the plot with a rapid taper of Pred and the addition of Tocilizumab.How are you getting on with it? I had such high hopes.
Don't know yet - something feels different but I have other problems with bursitis clouding the view a bit.
That’s the big difficulty - a clouded symptom picture. Good luck!
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