Alternating doses: I've been off & on Prednisone a... - PMRGCAuk

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Alternating doses

79andCounting profile image
9 Replies

I've been off & on Prednisone a few times in the past year while they tried to figure out whether I have PMR or RA. Finally decided on PMR, I was on 10 mg Prednisone for a month, then Rheumatologist put me on an alternating dose - 10 mg one day, 7.5 mg to next. From the first day of that change I haven't felt 'right'. I feel like a yo-yo, up one day down the next, heart palpitations every other day, little aches & pains creeping back on the 7.5 days....

I stuck it out for six weeks thinking I'd adjust but it's not getting any better. Now that the aches & pains are back, I decided to stick with 10 mg for a while longer and then discuss a slower taper. The pains are very minor, but thigh pain caused a bit of panic because that was my most painful experience. A few months ago I was having level 8 thigh pain throughout the nights, felt like someone was shredding my thighs with razors. I don't want that again!

Anyhow, I looked through some of the posts about alternating doses but couldn't come to a conclusion whether I should give it a longer try, or stick with 10 mg until I see the doctor in a couple months.

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79andCounting
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9 Replies
herdysheep profile image
herdysheep

Those with better knowledge will be along soon, but if it took a while for diagnosis, the inflammation would have been building and 10mg sounds like too small a dose to knock it. Then alternating with a more than 10% reduction sounds bonkers to me. If I were in your shoes I certainly wouldn't go lower than 10, and that may well not be enough.

piglette profile image
piglette

I don’t want to be rude but does your doctor know anything about PMR and steroids? Alternating 25%/30% between doses every other day sounds like bad news I would have thought. I managed 0.5mg and some tough people manage 1mg but I feel 2.5mg a no no. You need to be on a dose where you feel comfortable.

79andCounting profile image
79andCounting in reply topiglette

She's considered to be the top Rheumatologist in a large (facilities all over the world) medical system, so yes, she should know something about PMR & steroids.

piglette profile image
piglette in reply to79andCounting

Frightening isn’t it? Perhaps she has specialised in some other part of rheumatology.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Although some guidelines do suggest alternating between 10mg/7.5mg - that usually after starting at a higher dose and reducing to 10mg... not starting on 10mg.

Most of us would say not a good idea.. and it's a 25% drop from 10mg - which again is not good.

You need to get stable again at 10mg... so maybe a month... and provided all okay then think about reducing by 1mg a time. if you cannot get 1mg, then try cutting you 2.5mg [if that's what you have] in half.

I did link my intro post to your first post, so maybe have another read through that...

SnazzyD profile image
SnazzyD

Goodness! Doing that kind of dose swing would have not lasted long for me! Heavy withdrawal every other day is not enjoyed by the body, and to what end? What’s wrong with 1mg per month? I did 0.5mg drops for me as the withdrawal was not workable. Once I got to the level where my adrenal glands had to start working again I had to slow down even more.

PMRpro profile image
PMRproAmbassador

"I feel like a yo-yo, up one day down the next, heart palpitations every other day, little aches & pains creeping back on the 7.5 days"

Exactly our point when we say alternating doses that are that much different just confuses your body!

However - 10mg is really too low for a starting dose and you obviously have barely covered the existing build up inflammation so you have no buffer at all going to a lower dose.She may be the top rheumy in a big facility - but that doesn't mean she knows about using pred in PMR. She will probably be far more used to using it in RA where a 10mg dose will usually do a lot in a flare and it is used to calm the flare down while waiting for the flare to subside or other medication to start to have an effect. It is quite a different world in PMR and many rheumies whose speciality is another disorder, like RA, tend to look down their noses at "just" PMR, considering it beneath them. Whereas in fact it probably one of the rheumatological disorders that is harder to diagnose and manage.

If it were me I'd try the flare protocol we talk about - add 5mg for a week or 10 days and drop back to 1mg above where you were and THEN try tapering but 1mg at a time at the most. If you only have 5mg tablets, try using one of our slowed tapers rather than her concept of alternating doses so the change is gentler.

Bcol profile image
Bcol

Have to agree with the others here. If that is the advice from a "top" Rheumy then I'm very glad I've had my GP to look after me.

iblue profile image
iblue

If it were me alternating between 10mg and 7.5mg I would more than not feel right! Prednisone has a great deal of effect on our hormones that control many body functions. It may be necessary to purposely create such a physiological imbalance but I have to question why? I would respectfully ask for an increased dosage that will be effective, and then wait until the inflammation and pain calms down before tapering. One thing that all of us here have learned, is tapering during pain doesn’t work well with PMR.

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