I have a face to face appointment with my rheumy on Tuesday and would very much appreciate some help.
Looking back over the last nine months she has given me three plans for reducing Pred' All three have resulted in flare ups and set backs measured in months. The first was 25mg to 20mg for one week,then 20mg to 15mg for one week,then 15mg to 10mg for one week.
The next was 20 to 15 to 12.5 to 10 over four weeks. The last was 15 to 12.5 to 10 on alternate days with 7.5. The last plan left me in more pain than when I first started. I have also been trying MXT for three months,( couldn't cope with it,)had a gap,then Leflunomide now six weeks and cannot cope with it.
So! my question is; Could someone please suggest a plan starting at 15mg and reducing to 7mg over six months. I would like to ask my rheumy if I can come off Leflunomide and focus on getting my Pred' intake down,but at my own pace.
I have had 14 months of dealing with side effects of countless medications and would like to reduce the fight and focus on one issue.
Thank you to those who may help.
Written by
yorkieme
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Oh, my goodness! I had to read your post several times to make sure I'd understood what you're saying. Your reductions have been much too fast and quite frankly gave me the jitters.Experts and longtimers here will be giving you good advice. They will know far more than your rheumy so hang on in there.
She wants me off Pred' completely as she believes this is the reason for my broken vertebrae, 7mg is my own target as I believe she will want me back on a sparer at some point and thought that figure might persuade her to let me reduce at my own rate.(pending suggestions on here of course,)
But what have you got? Is it PMR or something else that pred helps? If it is PMR then you need what you need for symptom relief or she has to get you permission for TCZ to try to reduce the pred dose. There is no point at all taking less pred than you need - you might as well take none because you WILL end up in the same state eventually.
Either way - she is intending leaving you with no means of pain relief - and that and the resulting immobility are also going to contribute to loss of bone density and spinal fractures can happen without pred - cf my husband. There are other means of dealing with the bone density problem when it has to be - and that should allow pred to be used too.
And I think that fundamental problem is what has to be addressed - if she is going to make you stop the pred in a fixed time, the choice is really do I suffer quickly now or slowly later? She has probably created some of the problem with absolutely intolerable reduction rates without any mitigation - and yoyoing almost always results in difficulties later down the road.
There isn't a plan as such to get you down to 7mg in six months, it really depends what your PMR thinks of it. Whatever you do I would aim at doing each reduction over at least four weeks and not faster. Under 10mg I would not reduce over 1mg a month, in my case I go for 0.5mg as I have problems reducing. Over 10mg you may be able to reduce a bit over 1mg. It does seem your rheumatologist hasn’t a clue about PMR or steroids, you can tell her from me!! Firstly get onto a dose where you are comfortable and if you get to a point in reducing when you have pain STOP until things are OK again.
What a few months you've had. Slowing the taper down is probably the only way this will work, especially under 10mg. May take a wee bit longer but if it doesn't result in a flare then it's still going downward.
I try to taper down by 1mg every 4 weeks. I tend to just drop in one go but you can use alternative days at new dose and old dose. Honesty if I went down by 5mg in weekly drops I would be crippled and then as you've seen you have to go back up.
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