I have just got off the phone with my Rheumatology Specialist Nurse who has advised me to start reducing my prednisolone by I mg a week. I am currently taking 8mg pred and commenced Methotrexate 15mg a week on 4 May.
My journey with GCA started March 2022 taking 40mg pred. I've had 2 flares, one at 17.5mg and one at 7mg. I would like to hear your views on this suggested taper. TIA
That is much too fast in my opinion. Presumably your Rheumatology Specialist Nurse does not know much about steroids.
That sounds too fast even with MTX added in……and MTX can take a while to be effective…. Sure those on it will advise shortly.
I agree with Piglette. Such a taper could well be asking for problems. Perhaps the nurse was overcome by the heat and meant to say, “1 mg a month.”
NO!!! At 8mg and below your body has to start producing cortisol to top up the lowering dose of pred to the amount the body requires to function. 1mg a week would be fine if you had only been on pred for a few months - while the MTX MIGHT allow you to reduce the pred quickly in the context of the GCA, there are no guarantees and I think it is unlikely to be very successful and it will not encourage the adrenal glands to recover faster. The only thing that does that is time and patience. Your adrenal function is the limiting factor despite MTX.
Personally, I think introducing MTX to a patient who is already at 8mg for GCA is rather senseless - there is little evidence that it makes much difference in GCA at all and they have added another layer of potential adverse effects.
Thank you for your prompt reply. I think I had already decided myself to taper monthly but I just needed a second (more informed) opinion.
I’m taking 10mg Pred, and in lots of pain due to various conditions. I saw my Rheumatologist 2 weeks ago and he wants me to reduce by 1mg a week until down to 5mg. I told him I wanted to reduce by a quarter mg a month and he said it wasn’t fast enough. I am still taking 10mg. haven’t started to reduce yet and he wants to see me in a month. Not sure how to handle this situation.
Try to get an appointment to see your GP and discuss it.
Thank you for that suggestion, hadn’t thought of discussing with the GP. Although I know he wants me to reduce too.
Too fast, your Methotrexate won’t have kicked in and even then you need to taper more slowly and carefully. Also Methotrexate is no effective for everyone.
I was on MTX for 10+ weeks before I began to taper my pred dose 1mg a month….NOT week. I was at 9mg at the time and had been stuck there over a year. I now drop .5mg every 6 weeks and will stay at my new dose for a month before tapering down further.
As others have mentioned MTX does work for everyone. You won’t know until you try to slowly taper your pred. I think dropping 1mg a week is asking for trouble (potential flare). It may be difficult to gauge if the MTX is even working if you’re dealing with a flare, and if that happens you’ll need to increase your pred dose (instead of lowering it which is the goal of taking MTX to begin with).
how long did you stay at 1. mg before dropping to .5 mg ?
I went from 9mg down to 8mg. When I attempted to drop 8 down to 7 my body protested so I dropped .5 mg to 7.5 and have been dropping only half a mg ever since (currently on 6.5mg). I follow a 6-week taper each time I drop.
Of note I’ve also lowered my weekly MTX dose from 25mg (where I started), down to 15mg a week.
If l followed the advise you have been given l would never get out of bed.1mg a week would would have not allowed things to level out for me
My GP also attempted a fast taper reducing 5mg every two weeks from 20 to zero but it did not work. I’m on 5 mg now and current plan is to reduce 1mg every 6 weeks.
The condition, causes and treatment are very individualised but a few common wisdoms seem to apply: one of them Ishtar once you taken steroids for over 6 or 8 weeks the taper timing needs to be slow as your body just does not readjust fast enough.
Good luck, hope it works well for you!!
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