from 8 mgs a day to 60mgs blast!: having tapered... - PMRGCAuk

PMRGCAuk

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from 8 mgs a day to 60mgs blast!

Janetknit profile image
34 Replies

having tapered down to 8 mgs over the last 4 months I was thrown into a very painful flare… felt just like the beginning of PMR 2 1/2 years ago. After urgent run to emergency, doctor x-rayed first for possible compressed vertebrae ( I’ve had two in the last year) finding all well there he prescribed me to a prednisone blast, 60mgs for 3 days, 40 mgs for 3 days and 20 mgs for 4 days, then back to 8 mgs.

my question is should I go slower between the final 20 mgs to reach the 8? Thank you for help, I always appreciate all the help you offer.

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Janetknit profile image
Janetknit
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34 Replies
PMRCanada profile image
PMRCanada

I’ve done pred ‘blasts’ before, but never at such high doses. I believe there is a window of 10-14 days to adjust your dose after increasing it to address a flare, before having to resume a normal (slower) taper.

Do you really need to increase your dose that high to get the flare under control? Has the flare been going on for some time, or more recently? I’ve heard of folks adding 5mg to the dose at which they struggled with re-emergence of symptoms, but never an increase from 8mg to 60mg (for PMR)?!?

Others will be along shortly, but I do hope you get the flare under control.

Janetknit profile image
Janetknit in reply to PMRCanada

I was in overwhelming pain, couldn’t walk or lay down…. I am grateful they are blasting me as I have never completely been without pain for 2 1/2 years. I started with a sed rate of 95… I wish they had blasted me at the very first!

PMRCanada profile image
PMRCanada in reply to Janetknit

Sorry to hear you’ve been suffering for the full 2.5 years. Yes, too bad they didn’t get the inflammation under control from the get go. Not being able to walk or lay down due to pain sounds horrible! Hope you get some relief.

Janetknit profile image
Janetknit in reply to PMRCanada

Thank you for reaching out. This flare is very bad, it went all out! I had a smaller flare a year ago, nothing like this. I am anxious to get this storm under control.

PMRpro profile image
PMRproAmbassador in reply to Janetknit

In GCA they sometimes use a 3-day pulse therapy of up to 1000mg pred per day as an infusion. And have established that the patients often have an easier reducing journey and even have a lower cumulative dose. I don't think the current trend to starting lower and reducing faster does anyone any favours. A good clear out of existing inflammation first pays dividends.

Janetknit profile image
Janetknit in reply to PMRpro

I’ve had this feeling for a long time… not high enough sweeping out of inflammation just leaving a perpetual Trail to clean up. Hoping this blast pushes me into a less inflamed body.

PMRpro profile image
PMRproAmbassador in reply to Janetknit

Fingers crossed

Janetknit profile image
Janetknit in reply to PMRpro

Thanks PMRpro, I pray so.

piglette profile image
piglette

It does sound a bit like overkill for PMR. Did the doctor give you any idea why he wanted to give such a high dose?

Janetknit profile image
Janetknit in reply to piglette

He definitely tagged this as a huge storm of inflammation, I was in pretty bad condition when I arrived for help. Once the x-rays showed no new compressed vertebrae, he rapidly started the blast. I will have follow up on august 19, if things aren’t greatly improved a MRI is possible to explore tissueProblems.

piglette profile image
piglette in reply to Janetknit

Perhaps he is a belt and braces sort of guy.

HeronNS profile image
HeronNS

No idea about the blast protocol but I would be concerned about going right back to 8 mg from 20 as that's where your problems appear to have really started. You may do quite well with just a couple mg more than 8, but you won't know unless you step down more cautiously, especially from 15 mg. although I know you can drop much faster than a regular taper when you've only been on the higher doses for a short period of time. This is just my opinion as I haven't had to do a "blast" myself.

Janetknit profile image
Janetknit in reply to HeronNS

Thank you HeronNS, I was thinking the same way. I still have 7 days of the blast, then I think I’ll go to 25, see how that goes and slowly taper

HeronNS profile image
HeronNS in reply to Janetknit

Listen to your body!

🍀

Janetknit profile image
Janetknit in reply to HeronNS

Trying… my body is throwing a huge tantrum right now… clearly is unhappy

PMRpro profile image
PMRproAmbassador in reply to HeronNS

Won't have been on the high doses long enough to suppress anything - it is only 10 days in total.

HeronNS profile image
HeronNS in reply to PMRpro

I was thinking that if someone flares at a certain level, is it really wise to drop right back down to that level again?

PMRpro profile image
PMRproAmbassador in reply to HeronNS

Well no - but it is more likely to be just 1 or 2mg too low and it sounded as if your doubt was relating to going from 20 to 8 in one go. I'd go to 9mg if I was feeling brave, 10mg if I was being cautious.

HeronNS profile image
HeronNS in reply to PMRpro

Yes, I guess maybe I wasn;t as clear as I shoudl have been. I actually had rewritten that reply 3 times trying to make it clear without sounding too authoritative, as I'm not!

Janetknit profile image
Janetknit in reply to PMRpro

This sounds like sound advice, I have a few days to see if I am ready for the plunge

Janetknit profile image
Janetknit in reply to Janetknit

I am running out of pain relief everyday by 9 pm , the prednisone efficacy dissolves just in time for a rocky night, tomorrow I’m going to 40mgs and I’m facing that with trepidation 😳

PMRpro profile image
PMRproAmbassador in reply to Janetknit

You could try splitting the dose - about 3/4 in the morning and the rest later enough in the day to carry the effect overnight.

Janetknit profile image
Janetknit in reply to PMRpro

I will consider that, the nights are really hard. I have already taken the whole doze for today, so tomorrow I will see, tomorrow is first drop to 40.

PMRpro profile image
PMRproAmbassador in reply to Janetknit

Bit concerning that that high a dose isn't doing 24 hours though

Janetknit profile image
Janetknit in reply to PMRpro

I agree, I actually have an extremely high tolerance to pain which makes this disabling pain even more concerning. Prednisone is the only treatment that is bring relief , I’ve tried extra strength Tylenol, and zip… nothing. I have follow up appt the 19 th with urgent care… possible MRI if there is still concerns

PMRpro profile image
PMRproAmbassador in reply to Janetknit

Mind you -if you are a person where the antiinflammatory effects is only 12 hours in duration, it doesn't really matter how much you took, it will still wear off. Which is why it seems a bit daft giving so much, you need enough but overkill just means you got all that extra pred for side effects!

Janetknit profile image
Janetknit in reply to PMRpro

We’ll, I hope it’s not true, pred lasted a lot later today and tomorrow I go to 40 mgs. Maybe a lot of the inflammation is being taken care of.. hoping

pata63 profile image
pata63

This is timely for me as I have just gone back up to 20mg having been stable on 5mg with no pain since Oct 2019.

I was thinking I would probably be doing the kind of reduction I did in April 2019.

20 mg 1 month

15 mg 3 weeks

12.5 mg 3 weeks

10 mg 6 weeks

7.5 mg 3 weeks

6 mg 3 weeks

5 mg since mid Oct 2019

During the reducing period I never had symptoms nor a flare. That's why the reduction was continued at that pace. Long after being on 5 mg I did have the occasional "sick day" doubled doses when I was in hospital a few times with acute bacterial prostatitis and sepsis, a kidney stone and an inguinal hernia op and a week of gastroenteritis. That was my first half of 2020. I barely noticed Covid was going on. I was a bit preoccupied. 😉

I haven't heard about flooding doses that high. I've been given a one month supply of 20mg and I have a follow up consultation in another week and a half. I'll see what tapering schedule is suggested.

Janetknit profile image
Janetknit in reply to pata63

Thank you for your helpful response. I am sorry you also are in my position to have to increase after all time spent getting numbers down. I really like your schedule for reducing it and have posted it to my calendar for guidance in the coming weeks. Quite honestly, my flare pain is so bad I would have taken any dose eagerly to stop the pain. Your journey sounds very scary with sepsis,

Hernia and bacterial prostatitis, gastric problems, you have really been through a lot.

Thank you for sharing taper plan, hope you get your flare to quiet done soon!

Poshdog profile image
Poshdog

Also tapering or trying to from 4mgs to 3.5. Using DSNS method and all went well until 3 days old dose 1 day new dose. Then muscle pain everywhere but no stiffness. Guessing this is adrenal so have doubled dose to 8mgs and will try again leaving longer intervals when I can move again! Good luck

Janetknit profile image
Janetknit in reply to Poshdog

Oh Poshdog, I sympathize with you… I also spent months slowly using the DSNS method… I was so proud of my achievements. Then starting 4 months ago my numbers started to raise so I stopped tapering all together… unfortunately my body proceeded to flare with a huge storm!Totally get the “ when I can move again”,

I hope you are better soon and if you’re like me , hoping you can sleep at some point over the pain. Good luck to you also!

PMRpro profile image
PMRproAmbassador

With a taper like that it is OK to just go back to your baseline.

Seems a tad OTT mind you! I'd have suggested a few days of 20mg and back to 9mg - 8mg is obviously too low.

Having read you more recent reply - Are you already better after the 3 days of 60mg? I'd drop straight to 20mg for 3 days and then maybe 15mg for a couple of days and back to 10mg. 8mg wasn't enough - but difficult to say where you need to be now.

Janetknit profile image
Janetknit in reply to PMRpro

I don’t think 8 mg was a sound number for me, I was definitely in denial as my numbers had begun to rise. My rheumatologist stopped all tapering but it wasn’t enough to stop this huge flare. Ten sounds like a possible answer, and I feel more confident with the drop after reading your comments,Thank you for quieting my concerns

Janetknit profile image
Janetknit

Dad2cue, thank you for that information, nice to know someone got through the blast successfully! Hoping this is a one time experience, but good to know it can happen again. Always be prepared….this flare was pretty bab😕

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