PMR, fever

Thank you, Eileen!  I am new to the forum, so I am making mistakes!

I was diagnosed last March...Sed rate 87, C-Reactive Protein 66.8, severe anemia, high white blood count, crippled at night. Started on 15 mg for 1 week, 10 mg. For 25 days, 7.5 mg since (5 mg a.m., 2.5 p.m.). Tried to reduce to 5 mg twice, but was not successful (which I have now learned was a bad idea from the start!). I am still "recovering" from the last tapering attempt...only tapered two days...and have spent the last 2 weeks adjusting back to the 7.5 daily. Yesterday, however was the first time I experienced the hot, sweaty surge during the day....usually those only come during the night. That is the reason I thought I had a "fever"...but, like you said, I did not actually take my temp! Felt crumby yesterday and today...guess it is a "flare"... Will slow down! Appreciate all the help from the forum!

Kathy, well now that you've given us a bit more information, it's quite obvious that you have been advised to reduce your Prednisolone far too quickly.  You should have been kept on the 15mg starting dose for at least 3-4 weeks and then your blood tests should have been repeated to ensure they had returned to near normal before any reduction.  Even with normal results, reducing from 15 to 10mg is a step too far - such steep reductions can and will result in the symptoms returning as you are, unfortunately, experiencing.  If it were me, I would go back up to the dose at which you felt better even if that means increasing back to 10mg.  If you leave it any longer, it could even mean returning to the starting dose to get the inflammation under control.  It is also recommended that the whole dose is taken together as early in the day as possible to achieve best control of the inflammation.

Thank you! I think I will go back to 10 mg. Also, the fatigue is as bad as the pain; is the fatigue from the pred or the PMR?

Kathy, both the inflammation and the steroids can contribute to fatigue and it is probably high up in the list of side effects that we complain about the most.  Added to this, our sleep can be very distubed, so if you can catnap during the day that can help.  It does improve as we reduce the dose but those reductions have to be done very gradually, with the latest recommendations that we shouldn't reduce by more than 10% at a time in order to avoid flares.  You should have a mixture of 5, 2.5 and 1mg tablets to enable these smaller reductions.  Uncoated tablets can be cut in half but the enteric coated tablets should not be cut.

Many people take years to taper to 7.5! And once you start yoyoing the dose it seems to become more difficult to taper each time. Reductions should never be more than 10% of the current dose and some people can't even manage that at one go - we have a schedule that takes a month to reduce 1mg and it seems to work for almost everybody, But you aren't aiming for zero - you are aiming for the lowest dose that controls the symptoms. One group keeps patients at 10mg for a year - and that results in a flare rate of 1 in 5 rather than 3 in 5. We reckon go even more slowly and you can avoid flares.

Kathy, you're doing well if you only lose your ability to think clearly during a flare - mine went AWOL for a couple of years when on Pred!  Don't beat yourself up about the "lesson learned" - we've all been there, but it's that learning experience that has enabled us to offer support to others as they embark on this journey they never expected to take - one day you will find you will be able to do the same.  Meanwhile, give yourself plenty of TLC.