Would someone be so kind to explain to me how to determine if pain/discomfort is from Pred reduction (and to work through it) or a flare? My recollection is that if the symptoms appear after a reduction, it’s probably due to the reduction, not panic and let body adjust. However, if the symptoms appear somewhat later after a reduction, it could be a flare. Is that correct? If so what is the time difference for the flare? A few weeks after the reduction? I’m trying to help a friend just diagnosed with a non-specific autoimmune disorder and I don’t want to give her bad information.
On a personal note, I made it down to 2.5 mg and flared. My doc and I have decided that I will most likely stay on a low dose of Prednisone. I’m at 3 now. I’m fine with that.
Thank you to this sub - the education I’ve received here has truly been a Godsend! Angels online!
Good health to all!
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Insight329
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Well done in getting so low. Steroid withdrawal tends to happen in the first two to three days and then goes away while a flair can take a week or two and usually does not go away! Steroid withdrawal can be helped by taking a mild painkiller.
I admit, I wish I could get lower, but my journey has been fairly straight - no up and downs. Only two minor flares. I attribute that to the information that I've received here. The tapering information was invaluable. My relationship with my doc strong -- I impressed him at the beginning of treatment with the knowledge I gained here. I trust this site and the information that I get here. You all are incredible!
Don’t I know it! Early on I gave him the Dead Slow taper plan in one of our appointments. I allowed a Med Student to join us. I ran into the student sometime after that and he shared with me that my doc started giving that information to his patients. (Med Student was doing a rotation with him so he witnessed it.) I loved hearing that! My doc had always been supportive of ‘slow as you go’ but I was tickled that PRMGCAuk had provided something that he shares with his patients. Doc is now the Medicine Residency Training Director and it brings me great comfort to know he’s giving his Trainees a good education on Pred reduction. I’m so lucky I was able to get him for my doc.
Can't say it enough - you aren't reducing relentlessly to zero but are looking for the lowest effective dose as a maintenance, if you like. You have reached it but it doesn't mean you won't get lower - just not yet. Patience - I know it has been 5 years - but that really is about average!
You can flare quickly too if you have been doing steps down that are relatively big. But steroid withdrawal does tend to be immediate and then improve over the following week or two. Whether it happens immediately or only after a few days - or even weeks - a flare gets worse over time. If you are only slightly too low then it really can take a few weeks to register that you are getting symptoms again and why we don't support the idea of reducing every couple of weeks. And it isn't worth being in denial - ignore symptoms flaring up and you can get into real trouble!
PMRpro, you nailed it on the head! I was lured to that zero. My whole journey, I've been mindful of what the goal is - to take the dose needed for the symptoms, hopefully no more and absolutely no less. You taught me well on that. But wow - that low dose played a mind game on me. Oh, that zero was so close. What an eyeopener and reminder when symptoms reappeared. DARN IT! But, I'm reminded that I'm fortunate to get to this low and if I have to stay on a low dose (no matter what that correct dose is), I'm fine with that. Thank you again, PRMpro, you've been absolutely pivotal in my successful journey.
hry there...I.saw this today and had to.go get a dexa....came home and just found this post again. In all of our back and forths the second part of this post goes to a question I had....and one I have struggled to get in my brain...even when I ask I feel like it's so simple but alas it's not for least for me.
so after playing roller coaster with my.dose and all the damage I caused myself (doc's plan though)....maybe a month ago I ended up at 22.5. 20 didn't work...nor did 21. 22.5.did. So after a few days my PMR symptoms resolved pretty much. No back pain....hip pain, thighs, only e of my shoulders was bugging me...makes sense. My energy was normal for me. It was not all 100% but huge difference. I didn't go nutsy.doing stuff...I continued to take it easy...I still have my prePMR stuff so...
SO the piece that I stumble with is thi:..at 22.5 and in the very beginning when .I took the pred it ook a few days for it to make the difference....but it totally did. All dose changes were doc ordered so in the beginning I just followed the.schedule. after 15 I hit the "this really isn't working stage. That's when I was all over the place.
This time.I was on 22.5 and.I went down to 20 yesterday as directed. No change in symptoms...all was well. Woke up this am.and for.the first time ever I had the stiffness you all describe. It really sucks...I am glad that's the only time so far. My back hurt, my joints are wobbly, my neck and shoulders were sore and felt weak. My back has been bad all.day. I was shakey....tired (not the super bad tired). It is a big change in.wrong direction.
So....yes the Q.....is this the lower dose not working at all....or a flare...isn't that the same thing? This has been the hard.point for me. What do I do? .Give it a week or so at 20 and see if it can sort itself out or.....I struggle trying to know what this is.
I don't have control 100% on the dose....but I was told to go.to 20 a few weeks then down again. Prednisone side effects are there...but I want to understand this in my soul so I can stay on a better track. Also it will help me advocate for the right dose when I see the rheumy again. I hope my question makes sense. Am I jumping the gun feeling the dose will not work...do I just put up with the symptoms to see if they clear up or pull the trigger and move up which I don't feel I can really do but...I am trying to get this. Blah blah blah.......
thank you...sorry so long. If it isn't clear you can tell me to go .jump in a lake. take care
Often when pain appears immediately you change the dose, it can be steroid withdrawal. Many people are unable to cope with a drop of 2.5mg all at once - it was a factor in the development of the DSNS slowed taper in response to a lady who had been badly mismanaged and after massive flares was struggling to reduce even at above 20mg. By switching to DSNS and going really slowly 1mg at a time she got down to 10mg - but it was slow going.
It is quite right it isn't as simple as "just" the dripping tap although a couple of top PMR rheumies in the UK also espouse the concept to explain what is going on to patients who have no scientific or medical background. Unfortunately, there is no universally available spanner to turn off that tap - and it doesn't matter whether you are looking at a tool that just turns off the tap or whether it is to remove the water supply at source. All Actemra can do is switch off the running tap of inflammation creation, it doesn't do anything about the actual underlying cause, the autoimmune disorder.
You are in the USA where Actemra is used for PMR when funding can be approved. Otherwise - you have to use the all-purpose tool of pred to scoop out inflammation a cup at a time out of the bucket. Or they must investigate thoroughly in case it isn't something more than "just" PMR.
THANK YOU, THANK YOU, THANK YOU! I knew there just had to be a post on this, but alas, I looked but didn't find it. (Maybe I was a bit too much in a hurry to do a proper search.) You always explain things in such a clear and concise way! Never doubt how important you are to us and this sub. I'm passing this on to my friend - and saving it for me, too. Thanks again!!!!
hi...not sure. I don't think my rheumy either knows or believes in this med. I need to see what she says. I am glad it worked for you though.
It also is the way...when you feel your worst you have to jump through hoops to get a med.....I am so tired and drained right now I can't even process it. LOL.
thanks for that info. I will add it to the list of things to ask my rheumy about then. I need to pull all of these things I am learning to one place so I can make sense as things go on....and in prep for my next appt.
On my RA it's part of sjogrens for me and I have only had 1 flare. Not sure what has quietly gone on out of reach of the placquenil and 3 mg pred....pre PMR...but not a lot of problems. Osteo more of a problem. But we'll see what comes out of my conversation w/doc.
my eyes are so dry I was wondering if I am having a sjogrens flare...I need to find out if I am getting a sjogrens test coming up.
my brain cells hurt.
take care and thanks again for the info. Have a good weekend.
"There must be some funding for Actemra in the EU too for people with PMR only."
No there isn't - officially at least. The Genentech patient assistance is only available in the USA. It can be approved by special case applications to the state funding system in some countries but that requires renewal every couple of months, Or the rheumy changes the diagnosis.
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