Prednisone Tapering Challenge: This is the third... - PMRGCAuk

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Prednisone Tapering Challenge

RaisinBran profile image
26 Replies

This is the third try for me at tapering off of Prednisone. I started @ 15mg for PMR. The first few times, I'm sure I rushed trying to get to zero. Even got to zero mg the second time and had to jump back to 5 to get some relief. This time I used the Dead Slow Method and had to extend that beyond what was suggested because my body was telling me it wasn't time to taper again. So I prolonged each taper until my body was ready. I was on 3mg in October of 2022 and have been tapering since then. I have just finished tapering from 1mg to 3/4 mg for the past two weeks and it was very challenging. I have severe Brain fog, taking 3000mg of Tylenol daily, very sore in neck and shoulders and extremely fatigued. Scheduled to move my residence 400 miles this weekend and wondering if I should go back up to 5mg and try after my move for the fourth time. My Rheumy had cortisol, and meds drawn two weeks ago and suggested I was good at 1.5 mg to stop the Prednisone. Obviously, my body wasn't ready to do that, so I have continued. Thank you PMR people for any advice you could give me.

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RaisinBran
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26 Replies
SheffieldJane profile image
SheffieldJane

I wouldn’t try something challenging when you have the huge stress of moving your residence 400 miles. I think your idea of a 5 mgs boost for a few days is a sound one. Your instincts have been right so far. If you increase for a few days, you can go straight back down without tapering.

RaisinBran profile image
RaisinBran in reply toSheffieldJane

Thank you

Charlie1boy profile image
Charlie1boy

I agree with SheffieldJane.

RaisinBran profile image
RaisinBran in reply toCharlie1boy

thank yo Charlie1 boy

alansouthworth42 profile image
alansouthworth42

Having suffered with PMR for fifteen years I have tried tapering off Prednisolone numerous times, having had to resort back to 5mg as a maintenance dose each time, however I recently am trying again at the rate of by 1mg per month as recommended by GP, I'm currently on 4mg.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toalansouthworth42

I think if I were you with your history, I’d be trying 0.5mg a month…

RaisinBran profile image
RaisinBran in reply toDorsetLady

Thank you DorsetLady, I'll try that but I'm in a lot of neck pain.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toRaisinBran

Actually it was a suggestion to Alan, not you.

As you are doing 0.25mg per taper, so stick with that...or if you are going to treat it as a flare follow advice in this -

healthunlocked.com/pmrgcauk...

RaisinBran profile image
RaisinBran in reply toDorsetLady

I'm sorry if this is similar to my last post, but I want to be sure I'm doing the right thing. I have read your post re: Flare or Steroid Withdrawal and it makes a lot of sense. As I mentioned in a previous post, we are in the process of moving 400 plus miles away into the Boston area this week for good medical care and I just feel awful!!! I have so much brain fog and neck pain going on I feel like I need a truck load of Pred to eradicate this feeling. According to my diary, it appears that 3mg was the level that I was on that didn't cause me to take multiple doses of Tylenol. I tapered from 3mg in Oct 2022 to 3/4 of a 1mg tablet in Nov 2023. What is the least amount of Pred would you recommend for me to try if indeed it is a flare. I know you mentioned a 5mg increase for a flare, but can I try a 3 mg increase and if that doesn't work then try 5mg or should I go directly to a 5mg increase? What would you suggest? Thank you

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toRaisinBran

I would suggest you add 5mg to get flare under control.. as per advice in the link, and for 10-14 days- then drop back down to 3mg [no lower for now] ... as that seems to be your "good" dose...

You need to get rid of the built up inflammation, and I'd worry that going to 3mg initially was not sufficient to do that as well as dealing with the day to day inflammation. You are still going to be under pressure for some time, so don't even think about going lower until you feel more on an even keel [house-wise]...

... and good luck with move.

PS - never be sorry asking if you want something clarified...

RaisinBran profile image
RaisinBran in reply toDorsetLady

Thank you so much! I am so thankful for finding all of these wonderful people ion my life😍

RaisinBran profile image
RaisinBran in reply toRaisinBran

Should I add the 5mg in addition to the 3/4mg I am currently on or should I add 5mg to the amount that I felt good at-which was 3mg. For today then, I would be taking either 5 3/4 mg or 8mg. I know after 10-14 days your suggestion is to go back to 1mg more than whatever level you felt good at--and for me that would make it 4mg.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toRaisinBran

To really zap it - go to 8mg…. And then either back to 4 or 3mg - your decision, but 4mg would probably be wisest…

RaisinBran profile image
RaisinBran in reply toDorsetLady

I have been on my updated dose of 6mg instead of 8 and it has worked well. I wanted to try that first before moving to 8. I have been on the updated dose of 6mg for 6 days. Before I increased to 6mg, my tapered dose was 3/4 mg. That was the fourth time I have been that low and it just won't let me go. I think my safe dose while tapering was 3mg before I started to have some issues. If I try dropping to 4mg and tapering the slow method from there would that be your suggestion? I so want to get off of Prednisone yet I am just tired of the pain while trying. Thank you

PMRpro profile image
PMRproAmbassador in reply toRaisinBran

If you are repeatedly getting stuck at a similar dose, that is your body telling you that you have reached your objective for now: the lowest effective dose. That is what you are aiming for, not zero pred necessarily. If you try to force to a lower dose, you run the risk of getting things under control being more difficult, especially if you do it several times. That then results in you needing more and more rather than less as time goes on.

RaisinBran profile image
RaisinBran in reply toPMRpro

Makes good sense. I'm learning

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toRaisinBran

You might want to get off Pred, who doesn’t, but if not as easy as that [wish it were], but as PMRpro has explained - you need what you need…

To that end I’d stay at 6mg for another week, then down to 4mg…

RaisinBran profile image
RaisinBran in reply toDorsetLady

Will do! Thank you

RaisinBran profile image
RaisinBran in reply toalansouthworth42

That you Alan!

Strelitzia profile image
Strelitzia

Have you considered taking Actemra? That is what helped me reduce fairly quickly down to 5 mg, but I have been on and around five all year, down to 4 and a quarter now. I am not racing to zero, I am very gingerly going a quarter at a time when I have had a long period of no aches.

RaisinBran profile image
RaisinBran in reply toStrelitzia

Thank you, good to know

PMRpro profile image
PMRproAmbassador in reply toStrelitzia

If he can do well at 3 or 4mg without Actemra - it would be OTT to add ACtemra. It is a heavy duty biologic and I doubt the risks of a biologic are less than that of a few mg pred. Which I suspect are required for adrenal insufficiency anyway

Strelitzia profile image
Strelitzia in reply toPMRpro

You know best. I was put on Actemra because of temp. arteritis. I just thought if he was in dire need, it might be something to ask about. No one wants to be on these biologics unless absolutely necessary.

Spanky2019 profile image
Spanky2019

I've been off prednisone for nearly a year. My dosage for gca originally was 60 mg then to 80 mg for over a month. With several relapses & back to 80 mg during one of the several relapses. I continue to have multiple health issues, some maybe worsened from Hugh doses of prednisone but it was needed for gca. The thing that helped me taper was weekly injection of Actemra for nearly 2 years. Listen to the experts here. It's not easy but you can/will get to remission. I've had surgeries, pacemaker, braces, RX... but life is good. Great doctors help too. I continue with wonderful primaryprovider, rheumatologist, neuro-ophthalmologist, orthopedists. I'm very blessed. Hope you will be too.

Thelmarina profile image
Thelmarina

This is irrelevant but I just love your name! 😂😂😂

RaisinBran profile image
RaisinBran in reply toThelmarina

Why TY Thelma

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