Pred taper schedule

[Duffer55]

I have been looking for the post regarding tapering Pred by either dorsetlady or pmrpro and can’t seem to find it. Thanks in advance

[PMRpro Ambassador]

Mine is here:

healthunlocked.com/pmrgcauk...

[DorsetLady PMRGCAuk volunteer]

Followed by -

healthunlocked.com/pmrgcauk...

[Duffer55 in reply to DorsetLady]

Thanks to both of you. I am currently at 12.5 but have some pain and discomfort so Rheumatol told me to go back to 15 for four weeks. She had me taper from 15 to 12.5 before. So I want to taper per your schedules going forward. She’s also mentioned methotrexate. She also questions ra or fibromyalgia now since my ESR is normal now. I told her I have no joint pain and swelling and test for ra was borderline. I am experiencing butt pain as if I have sat on a bleacher for too long. I am also doing physical and occupational therapy one time a week

[DorsetLady PMRGCAuk volunteer in reply to Duffer55]

Your ESR you be in the normal range - that means that the Pred is doing what it should - keeping the inflammation under control.

It doesn’t mean you don’t have PMR! I never understand why Rheumies don’t get that!

Good luck.

[Duffer55 in reply to DorsetLady]

I’m trying to educate her on the goal to be pain free, not to get to zero.

[PMRpro Ambassador in reply to Duffer55]

Was the ESR raised originally? Not that that matters - up to 1 in 5 patients with PMR/GCA have levels "in normal range" and not that that means that it is YOUR personal normal level. Also, many people on pred can flare without the levels rising for some time, up to 6 months has been observed. And otherwise - of course it is normal, you are on pred. There are add-ons that cause similar symptoms: piriformis syndrome and myofascial pain syndrome are just 2 examples. They may improve at higher pred doses - and resurface as you reduce.

[Duffer55 in reply to PMRpro]

Yes both crp and ESR was elevated originally. I like my rheumy and I keep trying to educate her with all the info I get from this site. I don’t think she gets the full picture though. She is a nurse practioner and works with the rheumatologist. She did give me 1 mg Pred though to work with. So my plan is to use the slow method to continue my tapering.

[Hidden in reply to PMRpro]

There may not be an answer to this and i hope i word it right!....my markers have moved in line with my symptoms down to 6mg. Is it possible for them to stop doing this despite symptoms at some stage. Just preparing myself for the possibility of me feeling worse but markers staying put at current level (the pain killers have dispersed all the extra pain i had at the weekend). I can imagine thats when my relationship with the rheumy might stutter!

[PMRpro Ambassador in reply to Hidden]

If painkillers work it is more often than not a sign it isn't the PMR. And no - I suspect there IS no answer to it! If your markers have always moved - you really would expect that to continue.

[Hidden in reply to PMRpro]

Yes. I dont think i am currently flaring. Painkillers showed me its other things. Bless them!

I suppose in the end i will just have to see what happens. I think i am lucky that they move up and down when i have symptoms etc. Can't imagine how the 20% that don't have ESR/CRP movement feel if dr only treats on that basis. Thanks again.

[PMRpro Ambassador in reply to Hidden]

Half the time we don't get diagnosed in the first place!! Five years for me - until I worked out what it probably was.

[Soraya_PMR]

“ She also questions ra or fibromyalgia now since my ESR is normal now. ”

Head meet wall!

ESR normal because of pred.

Not fibro, that’s not inflammatory and doesn’t respond to pred.

Keep educating, you’ve a way to go!

[Duffer55]

My thoughts exactly. I am struggling a bit with muscle weakness especially core strength which is why I am going to therapy. I want to be able to do things in my “early retirement”. Having a bone scan next week.