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PMR - What do you wish you had known . . .
Each of us has been on a journey with a disease that is not well understood, common but not identical symptoms and the steroid treatment is scary and problematic with its own side effects.
What is the one or two things you wish you had known early on that helped you put the pieces together and helped you better understand what is going on with you and your body.
Please share so we can learn from each other.
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@momac59 Oh yes - I always ask lots of questions and even challenge when I think something is wrong for the 'whole of me', rather than just managing one disease pathway! I was on 20mg to start during my first 'firestorm/flare'. Reduced to 15mg within 10 days and almost all symptoms returned! So doc wanted me to go to 40mg! I refused and suggested 30mg, which he agreed. This has stopped the vast majority of the PMR symptoms, but has wreaked havoc in my life with the prednisone side-effects.
My doc is saying he will discuss 'steroid-sparing' drugs with me and possibly even a chemo drug to hopefully be able to taper off the prednisone quickly, since it is more life-disrupting than even the PMR flare! This is, of course, after me having to suffer the effects of the prednisone for 7 weeks... feeling very frustrated with the process and truly value all comments and help from this group!
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2 Reactions@sbgigi your taper schedule is very steep compared to many of us. MY Dr said no more than 10% a time…..if after 3-4 weeks you are pain free for 2 weeks, then repeat process. Keep fighting , and asking! You should not have to live in pain. You are your own best advocate.
@cyndip could you send me the taper schedule example? My prednisone brain can't wrap around this. 🤷♀️
@carolneedham ok- let’s say I am taking 2 mg each day and I want to taper - I’m going to move in .5 mg increments. So my first goal will be getting from 2 mg down to 1.5 mg. 2 mg would be my “higher dose” (HD) and 1.5 mg would be my new “lower dose.” (LD) - that’s .5 mg lower. Using the schedule I posted, it would look like this:
Step 1 is HD - HD - LD- HD - HD -LD so
Step 1, Day 1 - 2 mg (HD)
Step 1, Day 2 - 2 mg (HD)
Step 1, Day 3 - 1.5 mg (LD)
Step 1, Day 4 - 2 mg (HD)
Step 1, Day 5 - 2 mg (HD)
Step 1, Day 6 - 1.5 mg (LD)
If all is well at this point, I’ll move to
step 2 - HD-LD-HD-LD-HD-LD
Step 2 Day 1 - 2 mg (HD)
Step 2 Day 2 - 1.5 mg (LD)
Step 2 Day 3 - 2 mg (HD)
Step 2 Day 4 - 1.5 mg (LD)
Step 2 Day 5 - 2 mg (HD)
Step 2 Day 6 - 1.5 mg (LD)
If all is well at this point I’ll move to Step 3 - HD-LD-LD-HD-LD-LD so
Step 3 Day 1 - 2 mg (HD)
Step 3 Day 2 - 1.5 mg (LD)
Step 3 Day 3 - 1.5 mg (LD)
Step 3 Day 4 - 2 mg (HD)
Step 3 Day 5 - 1.5 (LD)
Step 3 Day 6 - 1.5 (LD)
Now if all is well, you should be ready to drop the 2 mg and do 1.5 mg every day. If at any step I felt the PMR pain kicking up, I have just stayed at that step for an extra 6 days and so far it has resolved and I could resume tapering.
When you are ready to keep going with the taper, your new higher dose (HD) will be 1.5 mg and your new lower dose (LD) will be 1.0 mg. Just start at step 1 again.
This is a very slow schedule and I started using it when I dropped below 5 mg and kept having flares when I tried to keep tapering down. It has really worked for me! I make myself a little chart so I don’t have to remember and keep straight how much to take each day. I’ll attach a picture of my chart for you. I’m down to .5 mg and will start at Step 1 tapering down to zero next week. I’m super excited about that. I hope this schedule works for you too. Feel free to message me if you have any questions!
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2 ReactionsYou can see on my simple little chart below that I spent 2 weeks at 1.0 mg before moving on
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1 ReactionThank you!Sent from my Galaxy
If pain stops your taper, discuss adding LDN with your doctor. If it's adrenal insufficiency stopping you and you really want to get off the prednisone, discuss hydrocortisone pills with your doctor. I've been taking LDN with my taper for the last two months and I'm down to 5mg prednisone now. I was at 25mg three months ago. My fast taper is due to an SMM diagnosis and LDN has helped me bridge to kevzara, which I just started last week. Personally, I'm not concerned with how long it takes me to wean off the remaining 5mg because my hematologist-oncologist considers anything under 5mg to be insignificant. If I do run into adrenal issues though, I will discuss hydrocortisone with my rheumatologist.
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2 Reactions@cyndip How long has your total time been on pred? When were you diagnosed? How long were you on a higher dose? I was diagnosed early January and initially refused pred but capitulated March 20th. So all in all not too long. Tapered quickly and now at 2.5mg since june 5th. Frightened to go lower, pain is there but 1-2 totally manageable and really only when I work out. Pain goes away when I don't work out. Has anyone tapered off pred after bloodtests are back to normal?? My CRP from over 20 to 1.5 and sed from 125 to 17 My dr says to skip pred, 1 day this week, 2 next, 3 next. That would mean this last taper to zero will take 6 weeks. Dutch dr s are pretty conservative though. Has anyone's dr said that a dose below 5MG is basically below medicinal effects?? Wow, this PMR has been a really crazy ride, though seems I am luckier than many. It has really helped reading your stories, thank you for sharing.
I don know about anybody else’s experience but when it first started with the intense pain, nothing was detected right away in the average labs. A couple of ER visits involved pain levels so high I was tested for drugs, made to wait only to be given some shot in the but for the pain. If I had known then what I know now, I would be yelling, “check ESR, start steroid IV stat” to request something for the pain. Not a psych patient people!
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1 Reaction@pmrnew
People say all kinds of things about lower doses of prednisone. Many people do elaborate tapering strategies just to reduce .5 mg in 2 months. Minuscule doses of prednisone seem to make a big difference to many people. I personally haven't ever cut a 1 mg tablet of prednisone in half. I might have tried it but there were too many crumbs. I never question the necessity of cutting 1 mg tablets in half if that works for people.
Anyway ... an endocrinologist I saw when I had adrenal insufficiency from long term prednisone use told me 3 mg was a very small dose of prednisone and there was no need to taper from that low of a dose. For context ... this was only true when my morning cortisol level was within the normal range. Until my cortisol level returned to within the normal range, I had to stay on 3 mg prednisone as a maintenance dose for my low cortisol level. I was too scared to go from 3 mg to zero in one step so I never discontinued prednisone that way. I did a "countdown taper" by doing 3 mg- 2 mg - 1 mg - ZERO ... all systems go for no prednisone for a day. I did a few test launches so I repeated this pattern a few times before I actually blasted off of prednisone.
It is true that 5 mg of prednisone is considered to be the "physiological dose" which is equivalent to the normal daily cortisol production of the adrenal glands. If your cortisol level is low then you may need that much prednisone.
The "medicinal effects" of 5 mg of prednisone might be too low to control PMR Many people have flares when they get to 7 mg of prednisone so my guess is that at least 7 mg might be the therapeutic dose to control PMR inflammation assuming people still have an adequate cortisol level.
My thought is that there are two conditions in play after we taper below 10 mg. It is either active inflammation caused by the disease we take prednisone for. It can also be a low cortisol level due to a side effect from prednisone. Another possibility is a combination of both of these problems.
if you have read down this far ....are you from the Netherlands? I have fond memories of Camp New Amsterdam in the early 1970s when I was stationed there. That Air Force Base doesn't exist anymore. Someone told me the base is a "green space" now.
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