I'm 2 weeks into my latest taper and pain is returning beyond that of withdrawal symptoms so I'm considering going up again to the last dose. I'm not particularly experienced at taper having only done a fast (and horrible) taper.
Recent doses - 5 weeks at 20mg. Dropped to 17.5mg for 4 weeks and have now spent 2 weeks at 15mg but it's not enough.
I'm reluctant to go up but I'm also not able to do Pilates and run as normal either... I also have an awful situation with my partners dad dying of covid. We don't live together so I haven't really seen him for 12 weeks and now can't offer support in the normal way 😕.
Reading that back it makes sense to up the dose and remain shielding. Is it worth trying 16mg I wonder or should I go straight back to 17.5mg. I don't feel.as though this is a flare.. more that there's just not quite enough pred to mop up.
Thanks in advance all.
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Coffeebeans
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I am so sorry that you have been going through such a challenging time and for the loss of your partner’s dad. This will have impacted negatively on your ability to taper successfully. You could try 16 mgs but I suspect you may have to return to 17.5 or even add 5 for a week or so then return to 17.5 immediately and slow taper, when settled, in drops of 1 mg to save the day. If that makes sense?
I think we have all had some serious challenges over the last couple of months sadly.
I think I will go to 17.5 today. I always had a fast response so I suppose I will know fairly quickly if that's enough. If not, 5mg extra for a week as you suggest.
"I don't feel.as though this is a flare.. more that there's just not quite enough pred to mop up."
That is EXACTLY what a flare is, too much inflammation for the available pred. It can be because you go to too low a dose or it can be because the disease activity increases - and that is relatively uncommon really.
You have answered your own question - the last 3 months have been stressful anyway, add a family member involved that closely and it is even worse. Any emotional kicking makes me flare too - often just for a few days if it is a single event but nevertheless there. And this is ongoing.
And when you go down from the 17.5 next time, just try 1mg at the most. Better to have a few days at 17.5 that you know worked and then go down slower than going to 16mg first only to find it isn't enough and is still allowing the inflammation to build up, albeit more slowly.
It's much the same as PMR starts - mine crept up over a period of about 8 months from early spring where I couldn't sleep with my arms above my head and that was all until the late autumn when an attempt to use the crosstrainer to get ready for the ski season resulted in agonising thigh pain after about a minute or two! Other than that I was just generally stiff and sore at that stage and various gym classes I'd managed fine in the spring were increasingly becoming no longer an option. From mid-summer a step class felt like climbing the Eiffel Tower!
But many doctors insist the onset of PMR is overnight - and for some people it is, they wake up and can't get out of bed. That happens to me now if I have a flare of disease activity - but it tends to start as a flare of myofascial pain syndrome and my back just seizes up.
In not following a particular tapering plan right now other than via letter my rheumatologist suggested 20mg to 17.5mg then 15mg with 4 weeks between. Shes happy for me to go She's up if symptoms reappear.
This was all done remotely because of covid. I expect she thought I would be seen by the time I got to15mg but if not I'm more than happy to reduced down much slower and will look at the plans.
Having done that fast taper before I was probably quite naive thinking I could get to 10mg without many problems but obviously not. The flare up induced by the taper has really taken a while to get under control and I had to go up to 20mg to do so.
Slowly is the way 🙂
Hi... I started on 15mg and it certainly helped with the pain and mobility. Though there is still an edge there... I’m on this for 6 weeks, then see the rheumatologist where I’m expecting him to start a taper reduction per month... of 1mg a time... I know if I go below 10 that pain comes back but speaking to the very intelligent and experienced people on here I think the taper in the past was too fast .. started at 20mg and down 2.5mg a week... wish you well with the taper programme
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