Hi All,
Experiencing a flare right now. Was stable on 12 mg pred. Have had to go to
20 mg pred about 1 week. Holding my own (just barely). How long should I stay
at 20 before trying to decrease? Can I decrease at a fairly quickly rate when I start,
to get back to 12? Going back to see GP this week. Appreciate your advice.
Dorothy
Rocky, I''m so sorry your PMR is flaring up & hope you can control it again soon.
I know what a immense wealth of experience & knowledge that we folks on this forum have, BUT we never know what other medical history we each have. Also, tho' some of us may wish to share our own personal experience with you, but do remember that we all react to drugs differently. SO, I would go with the informed advice which your GP gives you. Do let us know how you get on with your GP. Warm wishes.
Rocky send an email subject heading 'Reduction Plans' to pmrgcafightersne@googlemail.com. Two will be sent to you and you can discuss them with your GP.
Dorothy, ouch! That must have been a severe flare if it required increasing all the way back up from 12 to 20mg to control it.
You say that after one week at 20mg, you are "just barely" hanging in there, so that doesn't sound like a recommendation for decreasing just yet.
If you are someone who had raised markers of inflammation (ESR and CRP) at diagnosis, then those tests should be repeated as along with your symptoms they can be a very useful guide as to reductions.
As you are returning to your GP this week, you will, hopefully, have some helpful guidance from him/her but meanwhile remain on the 20mg. Importantly, s/he will need to ensure that nothing else is going on, ie that the pain isn't due to another cause.
Once your symptoms are well under control, if a drop to 17.5mg in the first instance proves successful, a further drop to 15mg should be manageable - impossible really to say how long you need to remain at each dose as that will be dependent on your symptoms at the time. From our experience, it is usually possible to reduce a little faster the second time around, but to the dose just above where things went pear-shaped, so, in your case, not as far as 12mg but a dose somewhere just above, remaining there for a considerable time before trying a small taper back towards 12mg.
However, one step at a time (the best laid plans etc!)......and good luck. Hope you feel better soon.
What was your sed rate prior to the flare? What was your sed rate right after the flare?
If you are barely holding your own - then you need to stick where you are until the symptoms are stable. When you reduce you should be aiming for ABOVE the 12mg - it wasn't enough, it may not be now.
But beware - PMR can be a prelude to GCA and if things have suddenly got that much worse it must be borne in mind.
HI All,
Especially Celtic and PMRpro...
Went to see GP today and very happy with treatment.
He has told me to go up to 25, and if that is not enough, to go to 30.
I am to stay on that dose for a month and I am to go back to see him
in about 3 weeks (sooner if no improvement), and we will work out
a reduction plan.
He has given me a note for work (still working, just modified), so that
pressure is lessened.
I have pristine bloodwork...on paper I am healthy as a horse.
I am one of the 'atypical' cases of PMR, and my fear is always that I will
get an MD who doesn't understand that I can be very sick and still look
great on paper. Whew.
Now, if only my house and yard were not such a mess!.... And will be for
some time to come.
To think I was discouraged at being 'stuck' at 12 mg.....that looks like
and enviable number now!
Thanks once more for advice and support!
Dorothy
Dorothy, I appreciate that you have had a good experience with your GP. However, your story may mean that your PMR diagnosis is called into question. How long is it since you were diagnosed, and were you referred to a rheumatologist? If not, this might be the time to start asking for a referral.
yours
Kate
HI Kate,
I presented with symptoms in January of 2012, had quite exhaustive testing with no
diagnosis until April of 2013 after being referred to a Rheumatologist. I responded most remarkably to a course of prednisone at that time, and he made the diagnosis of PMR, which I had never heard of, and to this day do not know anyone else who has it (other than forum members) As I am atypical ( ie no supporting blood work but respond to pred) I remained under the care of the Rheumatologist until about 6 months ago when I was released back to the care of my GP.
In 2014 I experienced sudden hearing loss in my right ear, which may gave been an
episode of GCA. Again no bloodwork changes, was put under care of ENT specialist.
Was put on high dose of pred for a time, including cortisone injections in ear drum.
No improvement in hearing, ENT said that if blood supply cut to ear nerve for a very short time, could explain damage which is permanent.
I am responding to current dose of pred, and GP will consult with Rheumy if no improvement within a reasonable length of time.
By the way, what are other possible diagnosis? According to my blood work I am the
picture of health.
Very frustrated, just wish I had a house cleaner and a gardener....ha ha.
Regards,
Dorothy
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