Reducing predisone side effects

Posted by dga76 @dga76, Jun 28 7:26am

I have reduced my predisone from. 5 to 4 and am experiencing nausea, dizziness and slight headache. I reduced a week ago and am still experiencing these side effects. Is this normal?

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Profile picture for kjoed53 @kjoed53

@tweetypie13
I've heard that too. (I've also heard that you can taper kevzara by stretching out the shots from two weeks to three weeks and so on.) Unfortunately for me, my hematologist-oncologist can't get an accurate reading of my SMM while I'm on prednisone. My test results while on prednisone put me at low to intermediate risk SMM, but there's no way of knowing how much my numbers are being suppressed by prednisone. I have to be at 5mg or less for my next blood work on Aug 4. 5mg still affects the SMM markers but it is considered insignificant. I don't want to have another bone marrow biopsy until I'm off prednisone for a month or two. Insignificant to me is just like minor surgery. Minor surgery is surgery on someone else...lol

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@kjoed53 my experience and understanding is ……
We Take Kevzara to get off prednisone AND TO BE PAIN FREE.
We do not taper off Kevzara until the adrenals are recovered and still pain free.
The eternal rush to get it over with, will not work well with a disease that needs patience and pain free.

Reminder, I have no other health issues and my journey has been fairly “straight, although still a roller coaster”. No other meds or supplements, 80yo female.

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Profile picture for tweetypie13 @tweetypie13

@mp71 you take Kevzara to get off PREDNISONE…..Kevzara is your friend .

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@tweetypie13 Have you taken it for long? I;m kinda scared of it... Well there are only 5 more months left in this year, so would that mean I'm paying about $800 this year? then it starts over in January. I have an Essence advantage Medicare plan

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Profile picture for tweetypie13 @tweetypie13

@kjoed53 my experience and understanding is ……
We Take Kevzara to get off prednisone AND TO BE PAIN FREE.
We do not taper off Kevzara until the adrenals are recovered and still pain free.
The eternal rush to get it over with, will not work well with a disease that needs patience and pain free.

Reminder, I have no other health issues and my journey has been fairly “straight, although still a roller coaster”. No other meds or supplements, 80yo female.

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@tweetypie13
I'm sorry if I was misunderstood. Kevzara does not suppress or replace the cortisol that our adrenals produce. Kevzara is not a life long med. It needs to be quit at some point in time, but how do we know when to quit and not flare is the question. I have heard of stretching out the shots from two weeks to three to gauge if the pain will return when we quit using it. My plan is to extend the time between shots to see how the PMR reacts. If three weeks is okay then does that mean the PMR is in remission and I can quit kevzara or do I extend further to be sure? Kevzara for me has two purposes. The first is to get off prednisone and the second is to control the inflammation and pain. I'll use it for as long as necessary.

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Profile picture for mp71 @mp71

@tweetypie13 Have you taken it for long? I;m kinda scared of it... Well there are only 5 more months left in this year, so would that mean I'm paying about $800 this year? then it starts over in January. I have an Essence advantage Medicare plan

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@mp71 I have been lucky…no side effects with Kevzara.
I took it for 11 months straight…..went off cold turkey, except inflammation numbers went up again (CRP) Dr order restart Kevzara…..off for 2 months total…..
have an appt this week and after 10 weeks, blood numbers off, so am sure he will go to 3 week interval for recovery. (Happened before).
At this time, my body and life are exceedingly good, very much like pre PMR. So I am willing to ride this boat Little longer.

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Well, I hope you make it to shore soon!

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Profile picture for tweetypie13 @tweetypie13

@mp71 I have been lucky…no side effects with Kevzara.
I took it for 11 months straight…..went off cold turkey, except inflammation numbers went up again (CRP) Dr order restart Kevzara…..off for 2 months total…..
have an appt this week and after 10 weeks, blood numbers off, so am sure he will go to 3 week interval for recovery. (Happened before).
At this time, my body and life are exceedingly good, very much like pre PMR. So I am willing to ride this boat Little longer.

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@tweetypie13
PS: I have been pain free for months…..what drives my medicine choices is the inflammation numbers. If high numbers, don’t rush it.

Today is combined 98% dew point and humidity……this is my first pain free time with that weather since I started with PMR in Dec 2023. Let your body drive your decisions……you will make yourself crazy if you are fighting never ending pain. The anxiety will overwhelm your peace of mind and make it worse.
Lastly, been there, done that and it did not work for me.
PMR did not succumb to My lofty goals.
Good luck, keep fighting .

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