I can't / won't go below 5 mg at the moment because last time I did, I had a flare.
But . . . as I was also starting to get stiff at 5 mg, PMRPro wondered if maybe 5 wasn't quite enough?
So, rather than go to 5.5 or 6, I am taking a random 10! Did it for a couple of days (friday and saturday) last weekend and have just done it again. Sort of a little end of the week boost!
Has anyone else used Pred in this way, just taking an extra dose for a boost? I know the experts have talked in terms of taking enough Pred to "soak up" the inflammation. So if it feels stiffer and more inflamed by the end of the week, it seems logical to take a bit extra, just for a couple of days to soak it up? Or am I being too literal?!
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LMali
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Not sure it’s something we would recommend on a regular basis -and it’s sounds as if you may start to view it as your “weekend treat”…. and therefore not easy to stop.
I’d be more inclined to take an extra per day -and not give the inflammation 5 days to build up.
I have done it very occasionally but certainly not on a regular basis.
Just consider: if you take 5mg on a regular basis but then take 10mg twice a week, you are taking more than if you went to 5.5mg per day all the time. Once a week is maybe acceptable, twice, I wouldn't be happy about that.
To be honest, I have done it when I am traveling (preventative, in my mind), and also have taken extra when I feel the familiar PMR pain come back from overdoing it, or from working again recently, or sleeping on a different bed..but it is only occasionally and I don't want to make a habit of it..but it seems to work for me.
I have done it very occasionally. I dont think I would be happy doing it very often, it would feel like I was setting up a weird non recommended drug regime.
I really got it in the neck when the rheumatologist thought that I was yo-yoing, like you describe. I wasn't, he just wasn't listening. Your body won't know whether it is coming or going. Much better for your body all round for you to find your effective dose from a sensible taper and stick with that until you are ready to decrease again slowly. Unless of course, you need to increase for a good reason.
it’s very tempting, but I’ve never succumbed! Don’t think it would really work, & you’d end up on pred longer than necessary in the end, I think. Your body would get very confused!!
I was a Pharmacist before I retired so I tend to look at things slightly differently. I have been on Pred for suspected GCA and PMR for nearly seven years now so I have experience of what it's like being a patient.
Doubling your dose to give yourself a "boost" is not to be recommended. PMR symptoms or not, you will feel great on 10mg and you may well pay the price later on. Corticosteroids are powerful medicines and should be treated respectfully as they have a huge effect on many regulatory systems in the body, in particular the HPA axis. A flare is a flare and should be treated as such. A realisation that you have dropped below your optimum dose and are starting to display symptoms also needs to be addressed. Randomly popping more Pred cannot be recommended. I see you were first diagnosed in 2020 so you will have learned a lot in that time. You may have realised that the more flares you have, the higher you need to go to control the flare which makes tapering and reducing a more lengthy process. I very politely suggest you find the correct dose to control your daily production of excess Interleukin 6 , become stable on that dose and reduce slowly by no more than 0.5mg every 5 or 6 weeks. Remember our mantra... "The lower you go, the slower you go". All the best.
Thank you all for your comments and replies, I value the wisdom of the group. I guess I was treating pred a bit like a regular painkiller - take more to remove the pain . . . I will try just taking 6 mg per day and see if that controls it without having pain creeping back. After three and a half years I am disappointed to have not got better, so have resigned myself to taking Pred, in which case, I was becoming blase about taking it. I don't want to spend my life obsessing about tapering, I want to actually live my life! Preferably without pain . . . but I will try to do so sensibly. Thanks again everyone xxxx
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