Just looking for help and suggestions on prednisone withdrawals,

Posted by krispeabody @krispeabody, Feb 15 9:33am

So stupid me have been taking prednisone for two years now not necessarily every day probably on average 20 mg a day one pill maybe sometimes every other day.. I tried to taper myself off for about one month and ran out so I’ve been off steroids for a week. I’m on day seven and feel like I’m going to literally freeze up. I’ve never been in so much pain in my life. the worst is shoulders and thumbs and now cannot even hardly make a fist and I’m only 49 and a pretty active super fit strong guy I cannot even barely drive myself off from a shower or even clothe myself pretty pitiful huh lol… obviously I need to see a doctor and find out my Cortizone level but in the meantime, I’m assuming I need to go get another prescription to steroids prednisone probably do I’m guessing some heavy doses at first so I can get mobile but until I see the doctor in a week or two, can someone give me a good taper schedule would be much appreciated husband of wife three kids and one income, not looking good

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Mike | @dadcue | Feb 15 11:21am

In reply to @jeff97 "@dadcue I suspect they will look for an id." + (show)

@jeff97

Depends ... but an adrenal crisis happens more often during car wrecks and things like that. The first thing is to start an IV and stop the bleeding!

tweetypie13 | @tweetypie13 | Feb 15 12:02pm

Drugs are drugs….
You are a 49 yo male, taking steroids for “ walking pneumonia and congestion, and I just kind of continued …..”
Credit is given that you know you made a mistake.
You get yourself to the DR. NOW, call and scream. This is serious.

I totally agree with all the comments here, and will not dispense any more suggestions EXCEPT…..
STEP ON IT And get to a Dr., barring that, the emergency room.

Mike | @dadcue | Feb 15 12:08pm

In reply to @tweetypie13 "Drugs are drugs…. You are a 49 yo male, taking steroids for “ walking pneumonia and..." + (show)

@tweetypie13

My wife went with me so I wouldn't leave out any details. That was after I threw away all of my leftover Prednisone and after I "froze up" and couldn't dress myself. My wife hated it when I self medicated with prednisone. She had to put me into the car and she hauled me in to see her primary care doctor on an urgent basis. She didn't tell me where we were going.

My wife's primary care doctor sided with my wife. She agreed with my wife and said I shouldn't take Prednisone like I confessed to be doing. The only thing I requested was another Prednisone prescription. I got a limited prescription contingent on seeing a rheumatologist.

ropnrose | @ropnrose | Feb 16 8:08pm

I can't add anything, that the other responders have told you. If you can't see your doctor for two weeks, go to the emergency room.

stonewheel | @stonewheel | Feb 16 9:55pm

You should be in an emergency room.

Wayne Ewing | @wayneewing | Feb 22 6:49pm

Get a doc! My withdrawal taper was flawless, no pain....from 60 mg to zero...needs medical guidance and discipline...

gmdb | @gmdb | Feb 23 4:21pm

In reply to @dadcue "@jeff97 It is strongly recommended in the USA too. We all should be buying those medical..." + (show)

@dadcue you can buy them here in Australia but not single doctor I have seen has mentioned it. That includes three specialists, a couple of GPs and numerous doctors and paramedics during hospital emergency visits related to PMR. Unfortunately, it isn't part of the Australian PMR protocol but it certainly should be.

Mike | @dadcue | Feb 23 8:00pm

In reply to @gmdb "@dadcue you can buy them here in Australia but not single doctor I have seen has..." + (show)

@gmdb
"...not a single doctor I have seen has mentioned it."
----------------------------
I'm not surprised because that would raise a red flag about taking prednisone. I think doctors like to bask in the glory of prescribing prednisone. Their patients are so happy for the immediate pain relief that doctors fail to mention the consequences of long term prednisone use.

When doctors tell their patients to taper off prednisone quickly they get negative feedback. Patients can't taper off very easily unless they reduce their dose very slowly. The doctors who "understand PMR" tell us to increase our dose if the pain returns. The doctors who want us off prednisone are denigrated. My doctor was in the middle because she always said, " We (working together) have to find a way to get me off prednisone."

I think some studies should be done to determine why PMR patients have to take prednisone for years. I suspect it isn't all because of PMR. Tapering too quickly can cause symptoms that feel like a return of PMR (a "flare"), but it can also be withdrawal symptoms or both.

I figured out that my difficulty with tapering off prednisone was a combination of PMR relapses AND secondary adrenal insufficiency. However, I didn't understand that until 10 years after I was diagnosed with PMR. After my first PMR relapse, I should have started wearing a medical alert bracelet. That was when I reported a "pain crisis" instead of a PMR flare because my shoulders didn't hurt like they did when PMR was first diagnosed,

The solution for me was relatively simple ... I started a biologic which didn't suppress my adrenal function. I probably could have stopped taking prednisone in 3 months except I needed to wait more than a year for my cortisol level to improve.

I'm amazed that my rheumatologist isn't in any hurry to stop the biologic. I have been on a biologic for 7 years and off prednisone for 5 years. After my first year on prednisone to treat PMR, my rheumatology visits were almost exclusively about how much prednisone I was taking and the need for me to taper off.

I know PMR can't be cured. I no longer think the best treatment is to "take prednisone and wait for PMR to burn itself out."

csimmonds | @csimmonds | Feb 24 9:56am

It has been a year since my PMR diagnosis and starting on prednisone. I have tapered and am now on 2mg a day. When I tapered from 3mg to 2mg I experienced extreme fatigue for several days. I would feel weary and when I sat down I would fall asleep instantly and stay asleep for at least a half hour. Is this a common reaction to tapering? Will I have the same reaction when I taper to 1mg? Right now I have increased morning pain so I am going to consult with my doctor before I continue to taper.

tweetypie13 | @tweetypie13 | Feb 24 12:47pm

In reply to @csimmonds "It has been a year since my PMR diagnosis and starting on prednisone. I have tapered..." + (show)

@csimmonds
My experience…..Your taper at the lower doses is more extreme.
3-2 is a 33% drop.
Once your pain is gone, try alternating…..
Day 1-3, day 2-2: day 3-3, day 4-2….that pain free for 3 weeks at least….would equal a 2.5 dose, or abt a 15% drop.