1. < Polymyalgia Rheumatica (PMR)

PMR - Transitionaing from prednisone to another form of treatment

Posted by joan7 @joan7, Jul 9 8:05pm

I'm down to 3 mg Prednisone Every Other Day with 2 mg in between (A huge victory considering I started at 60mg in August, 2023). My Rheumatologist is recommending I go on Kevzara, but liver enzymes have been elevated for many years (Kevzara can increase this issue). My Gastroenterlogist is not too concerned. She said I can go on Kevzara but I would have to have blood work every other week. MY QUESTION IS: once you were/are down to the lowest mg of Predisone, what is your doctor recommending for you to switch your treatment to, and will it effect your liver enzymes? Just want to see if there is other options out there that work well. Thank you for your time.

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joan7 | @joan7 | Jul 9 8:05pm

Had to add something to lighten the mood.

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DadCue | @dadcue | Jul 9 8:19pm

Actemra (tocilizumab) allowed me to taper from 10 mg to 3 mg. PMR was well controlled but my cortisol level was low. The management of my Prednisone dose was turned over to an endocrinologist. I needed to stay on 3 mg of prednisone for six months before my cortisol level improved. The endocrinologist gave me the green light to discontinue prednisone.

My liver enzymes rose slightly after I started Actemra. I was referred to a liver specialist who said it was because of nonalcoholic fatty liver disease (NAFLD) likely caused by long term prednisone use.
https://www.healthline.com/health/prednisone-and-fatty-liver-disease#:~:text=Can%20prednisone%20increase%20your%20risk,even%20cause%20drug%2Dinduced%20diabetes.
The liver specialist said the NAFLD wasn't that severe so Actema didn't need to be stopped.

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1 reply
tuckerp | @tuckerp | Jul 9 8:51pm

I am just throwing this out there since you dont seem like a good candidate for any more liver problems. This is a huge accomplishment. Great news. You are so close that probably your cortisol is starting to kick in. You are down far enough that as Dadcue said cortisol testing is probably reliable. Around 3mg. The kevzara and actemra are biologics to try and keep you from restarting the pain and possibly restarting PMR. They do not help with cortisol production. Maybe just have your Dr test your cortisol. It might be working. If not stay where you are for a little longer. Just go really slow at this point. Next go to 3mg one day and then 2 days of 2mg. You may not need the biologics to accomplish your goal.

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joan7 | @joan7 | Jul 9 9:57pm
In reply to @dadcue "Actemra (tocilizumab) allowed me to taper from 10 mg to 3 mg. PMR was well controlled..." + (show)
@dadcue

Actemra (tocilizumab) allowed me to taper from 10 mg to 3 mg. PMR was well controlled but my cortisol level was low. The management of my Prednisone dose was turned over to an endocrinologist. I needed to stay on 3 mg of prednisone for six months before my cortisol level improved. The endocrinologist gave me the green light to discontinue prednisone.

My liver enzymes rose slightly after I started Actemra. I was referred to a liver specialist who said it was because of nonalcoholic fatty liver disease (NAFLD) likely caused by long term prednisone use.
https://www.healthline.com/health/prednisone-and-fatty-liver-disease#:~:text=Can%20prednisone%20increase%20your%20risk,even%20cause%20drug%2Dinduced%20diabetes.
The liver specialist said the NAFLD wasn't that severe so Actema didn't need to be stopped.

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Thank you so much!

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evita | @evita | Jul 9 10:24pm

Alguien esta con Kevsara para la (PMR) y ha tenido alguna mejoria Muchas Gracias

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ddonnagirl1 | @ddonnagirl1 | Jul 18 1:32pm

I just recently went from 3 mg of prednisone to 2.5. My rheumatologist says to take it very slow from this point. Maybe 6 weeks or longer. Alternating doses is also an option. I would think that these doses are so low that slow and steady is exactly what we need. I have been on Prednisone for 2 years and as am anxious as anyone to get off of it completely but so grateful to have gone from 60 mg to where I am now. For those of you new to the PMR journey all I can say is to be very kind to yourself!

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