Hello wonderful people,
After a severe flare I was put on to 20 mg. of pred. tapering over 8 weeks to 5, which I have now been on for 2 weeks. I have been recommended to now return to my previous dose before the flare, which was 2. mg. reducing slowly to 1.5. I can't help feeling that this is too big a jump, so would be very grateful for any advice. The good news is that for the first time in over 3 years I have no pain!
If being at 2mg caused the problem previously, you don’t want to go back to that dose in case same occurs.
I’d be inclined to try 3mg or 3.5mg for a month -and then restart your slow taper..
Thank you, that's helpful. Like so many of us I just want the whole thing to be over, and it's tempting to rush things.
Definitely no rushing … tempting as it may be 😳
I certainly wouldn't go to 2mg and to be honest I would try 4mg next. After all, you now know you can be pretty much pain-free and that suggests you haven't been on enough pred previously - but you don't really know at WHAT POINT it ceased to be enough, So you need to test the waters gently and not plunge in at the deep end straight away.
yes, the pred was never enough until I went on to 20mg 8 weeks ago. Being pain free is quite novel! I may go down to 4 for a week and see how I do before going lower. Thank you.
No - more than a week! You want to be sure it is enough, it can take 2 or 3 weeks to notice it isn't enough.
Looking back at previous posts, you seem to have flared quite a lot…. Is that you being impatient, or your doctors hassling you to reduce. Whatever, it’s no good…. You need to slow down…,and as PMRhas re-iterated - one week at any dose is not enough….
Absolutely - when people flare a lot it is a sign of poor management and even the literature admits that the primary cause of flare is reducing too fast or too far, It isn't the PMR/GCA being difficult - it is the humans being silly and repeating a previous action expecting a different result.
Actually I have had only one flare, but have asked for advice several times! Thank you all for your help.
I had a flare earlier in the year which I hadn't really seen coming and then thought it may be adrenals playing about. After an increase of 5mg pred I very slowly tapered back to where I was (nearly) but it seems 3.5 is a sticking point. A stressful few days plus 3 jabs in 6 weeks has helped tip me over the edge to another flare, so I will add 5mg again and then go back to 4.5 rather than 4 or 3.5 and stay there a couple of months. Does that make sense?
4.5mg sounds a better option...but if you keep having issues when trying to get below 3.5mg then maybe your PMR is telling you that is your limit - certainly for the time being.. No point is trying to push through it, if it is.
Thank you. I have caught this one more quickly, so fingers crossed.
If this is rhe first time you have been pain free in last 3 years maybe you've always been on too low a dose.
I think you are absolutely right. It is difficult to assess what being "75% pain free" (which is what I heard several times) should actually mean. I did query the dose more than once. The great thing is that now I have no pain and know that this is possible! Still not sure whether I should go on to Methotrexate AND hydrochloroquin as the rheumatologist would like me to.
The 75% relief in symptoms is for the immediate response to pred - it isn't the final answer which should be considerably better than that but may take even a few months. I had hand and foot pain and hip burisitis that didn't disappear until I had been on pred for 3 or 4 months and suddenly I realised that they didn't hurt when I stood up any more. They had been better - but not entirely gone.
That is why if 15, or even 20, doesn't get you to almost pain-free except for known, proven other pain sources, you need to try a bit more up to 25mg - if it doesn't help you go back to the previous best dose and take that as your baseline, Then you should never feel worse at the end of a taper step than you did at the start of it.
I personally would slow to 1/2 mg drops with at least 4 weeks in between at this point. Slow and steady.
Yes, thank you, this is what I was doing before the flare. Slow and steady.....
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