How do you know how much and when to raise prednisone level when you have signs of a flare up?

Bones, joints and muscles
1

Hi Everyone,

Been on prednisone for 2 years, 2 months, (but who' s counting?) with one major flare, 

i have been on 2 mg's for at least 2 months, and have not reduced, due to midsection discomfort, which I'm guessing isn't related, but, I'm not sure.

in the last 4 days, I've been feeling shoulder and arm ache and fatigue, both sides, which I recognize as a previous symptom of possible flare.

in the past, I've gone up as high as 5 mg, which seems to take away the pains, but I often wonder if a 10 mg shot, or one week pred pkg. , from the doc, while continuing with the 2 mg., might do the trick, and allow me not to have to taper down, again to 2 mg, over, possibly as long as 6 months. 

Has anyone tried anything like this, or some other way to avoid the long taper, again?

Also, how does one determine amount to taper, other than by trial and error?

So many questions.

I truly don't know what I would do, without this group.

Thanks,

Barb

2

Barb, I have GCA and have been on predisone for a few months more than you.  I had been at 1 1/2 mg. for about 6 weeks when my ERS jumped up to 43.  I did a burst of 15, 15, 10, 8, 6, 4, down to 2 and my ERS dropped to 27.  I am hoping it will come down some more, this happened once before and it worked.  GCA is a silent dangeous disorder which can lead to bood vessel destruction and blindness.  I have a blood test done ever month to keep a watch. 

Good Luck !

3

You wrote:  "I truly don't know what I would do, without this group.".  Me too!  I don't often reply to this website but I have learnt so much about PMR and particularly about myself.  I have been on Pred for 4 years now and can't seem to get off it.  I am 75 years old and lead a hiking group (Laguna Beach, CA) lotsa Cardio!  I am down to 2 mgs (this past year) but hurt all the time (almost everywhere but mostly shoulders and arms!) and am always fatigued, so I do self-medicate. 2 mgs then 3 mgs back down to 2 mgs, and I chase with 2 Ibupfrofen when I hike (5 miles).  But I am on several non-profit Boards and do a lot in the community.  The point is I am not half as bad as so many ladies and gentlemen I read about on this chat website and I hate taking meds, particularly Pred... I am 90 for Diabetes (between 70 - 98 is standard here, don't know if that translates for you) am not overweight but I think the Pred has affected my pancreas over the years and I can't get off this ... Wot's to do?  I just live with pain, soldier on and am grateful that I am retired and have good doctors... I am resigned to staying on Pred for the rest of my life (that has been difficult to accept)... but my Drs say 2 mgs is good and you can go up to 5 mgs daily if you have to, no more. A warm and gentle embrace in empathy and be brave, very brave!  

4

Barb, I went up 7mg recently and then reduced over a period of a week or two. I find that works quite well. Also you can reduce quite quickly if it is short term. If you stay on a dose longer I think it gets harder.

5

I do understand After 30months my Esr was 7.I was taking 1mg daily and felt ok,after 3 weeks tapering off I came of Pred for 3months.After 2weeks I felt discomfort of a flare.I had Esr blood test and it had shot up to 21 in three weeks.Rhuemy put me back on 2.5mg of pred and I felt good and pain free.After a month I had another test and Esr was v5. The lowest ever.Then diagnosed with inflamatory osteoarthritis.I still on 2mgs of Pred and waiting to see Rhuemy to go on different tablets. It is trial and error at this stage. It is 3. Years since my journey. began.eks I felt u

6

Barb, I resisted stepping up my prednisone during a few major flares and suffered for it.  What I have learned is that we have to counter the inflammation quickly or it has longer term, deleterious effects.  Finally, give it a try.  From 5mg where I had been - too low as I later learned - I did one day at 10mg, one day at 9 mg, one day at 8 mg.  A quick hit, but not so much as to reverse all of my gains from tapering.  It helped immensely, and now whenever I flare which is often after long distance travel, I do not hesitate to step up 50% for one or two days.

7

Thanks, Daniel.

Appreciate the info. 

Reading your response and others, gives me the motivation to jump in and test the theory.

Did you do this for just 3 days?

Did you go immediately back to the 5 mg's, after the last day?

Barb

8

John,

How often do you check your ESR ?

Do you always check before you do a burst?

when you are finished, do you go back to original dosage, before you started

unfortunately, had ESR done, last month, and it was extremely low.

rheumy says it can fall within normal ranges, but not necessarily be a true indicator of what is going on in my body?????

OK, decision made..

Thanks

barb

9

Answers to your questions:

1. ESR & CRP monthly.

2. My GCA is such that I go without noticeable symptoms, so far for 2.5 yrs. but have had high readings twice.

3. I go back to the dose where the reading was good.

ESR has a time lag and I believe CRP is closer to what the actual reading is at the time of the blood test.

 

10

Our objective is to taper and in theory, no faster nor slower than our underlying PMR will allow.  I powered my way to 5mg which was a mistake.  i have since learned that PMR has a mind of its own, and in truth we are managing prednisone, not PMR.  Some folks people taper slowly until thy flare, then tweak up the dosage to fine-tune.  Sound logic.  But many of us have periodic bouts of flaring, sometimes severe.  The inflammation is not good for you, so it makes sense to knock it down quickly with a quick bump in your prednisone.  A day or two at the higher dose, then back.  Otherwise your body will acclamate to the new level and you will be tapering from the higher level. 

That's my experience, anyway.  Others may have a more enlightened opinion.

11

I think you should try to figure out why you are having frequent flares.  For myself, fairly significant lifestyle adjustments have been necessary so that I am not as stressed. Also diet and not overdoing any activity, including exercise.

12

Anhaga,

How come you are so wise?

It only took me, all of 2 long years to learn from this group and to finally absorb these simple, but necessary truths.

my doctors had no clue. Thank goodness I found this site. I was truly desperate.

i will be 76, in a few weeks (happy for that) I was an athlete.

i was strong. I never got tired.

age didn't mean anything

i could go for ever. I believed I could still put my all, into everything, and took glee in beating all the young ones, at all sports.

what a rude awakening.

Stress and overdoing, or even doing, have become my enemies

i am emotional and I hurt for others, when they are suffering, and

Thats'something I am still working to control.

I am unable to play sports, without reprocussion, so the gym, and walking have taken their place., but, at half speed. I don't even recognize me.

What a bummer....but necessary.

and then there are my children...they think I should look great and be able to do the same things I did in my twenties. I'll bet almost all kids are like that, about their parents.

whoops, wandered way off the subject.

i Want to grow up and be smart like you.

barb

 

13

Daniel,

Been toying with this idea, a long while.

i hate to lose so much ground, especially after so much hard work.

checking the theory, seems reasonable.

Barb

14

  I wish I could follow what I preach....  However a strange thing happened with my youngest chld.  A little over two years ago he was back home for a job interview.  It was while he was staying with us that I slipped on ice and broke my leg (tibial plateau).  He was, therefore, suddenly made aware of how quickly a parent could become disabled, and as he returned to us for a few weeks after wrapping up things at his old location he was the one who paid most attention to me and helped me most.  Subsequently, even though he had moved into his own apartment, he seemed to be more sensitive to the growing disability I was experiencing after leg healed but I was succumbing (undiagnosed for many months) to PMR.  So he actually has been kinder to me than my husband, who until now was always the weakling, ill-health member of the partnership and who still seems unable to grasp that there are things I simply can't do any more.  And I don't think my other son nor my daughter, who were not living with me at the time, have any real understanding even now how my life has changed.

15

Beatrice,

I'm sorry for the Inflamatory Osteoarthritis diagnosis.

Does that mean you don't have PMR, or know you have to deal with both?

what kind of med's will you be on?

i wish you and all of us, better days, better health.

Barb

16

Hi Barb:  Right on Sister!  It is hard accepting the relative weakness of our older years, but it could be so much worse and I holding my own with pain and my kids are more tolerant of me now.  In friendship and Sisterhood. 

17

Hi,

I am a very new pmr, and was going to ask a similar question.

This week is my second attempt if reducing steroids from 15mg to 12.5, four days in I feel like I have been hit by a truck, very

shakey and tearful.

What's the matter with me, is this usual with reducing and does this last long.

Apologies for moaning, still in denial.

Julia

18

No this is not what should happen, Julia.  I believe you asked this question on another thread and received information about the slow reduction program many of us follow.  I was wondering how long your doctor let you stay at 15 initially, and did that dose resolve your symptoms?  If your symptoms cleared up within a few days of starting at 15 you should, ideally, have stayed at that level for at least a month to clear out the inflammation as much as possible.  You aren't "cured" the inflammation is being kept in check by pred, but the underlying disease is still active, and may stay that way for a few years.  My particular journey was, I think, fairly typical, in that I was at 15 with no pain at all for five weeks.  At that point my doctor told me to reduce by 1 mg a week.  If at any time in that progress I felt return of the pain I was to stop at that level.  It was this forum which reassured me that I could go back to the level where I last felt comfortable.  So I stopped at 9, went back to 10, waited there a few weeks, and then started (and my doctor gave her approval thank goodness) with the dead slow nearly stop method.  With a couple of hiccups (typically, again, at 7 and 5) I've been successfully reducing and am now at 4 where I feel most of not all of the pred side effects have gone away (not sure about my bones) and even my doctor is happy with me at this level.  It took a year, many might take somewhat longer and stay at the various levels a bit longer than I have done.  What I've noted, since you asked about pain specifically, is that I've a certain tolerance for pmr niggles - in other words, for example, the tops of my thighs might ache a little.  But if that ache got to the point where I had difficulty standing and taking those first couple of steps, I would know my dose is not high enough.   This is what happened when I dropped to 9 a bit too fast, but that incipient flare was easily caught, thanks to this forum.  I note that with each taper I may feel a bit of discomfort, and I now put that down to pred withdrawal because I never feel worse at the end of a taper than I did at the beginning, and mostly I feel better.  There are days at the beginning when I wonder, but so far it's gone well.  The secret it to go very, very slowly.  And especially at around 7 (or some people 8) the adrenal glands will have to start working again and they can be a bit lazy after their pred-induced holiday so it's typical to hit a bump at that point and have to wait while the adrenals catch up.  And, as you'll have gathered, for some reason 10 seems to be a sticking point, and I don't know why, but many of us have to wait around at that level for a while.  I understand it's even part of the protocol for one of the systems used by doctors to tell us to stay at 10 for a whole year. 

19

Julia,

Luckily, you have found your way to this site, relatively early.

After  2 years, I am still struggling for control, but without those who have experienced similar setbacks, and responded to my naive and frustrated questions, I would be still feeling, much like you do, at this time.

listen to "the experts" ( I'm not one of them)and learn to adjust to a new way of handling the way you deal with life in your new body.

For me, it's an ongoing, learning experience.....of trial & error.

Wishing you well.

barb

 

20

Thank you,

The support and advise I have received is amazing.

Working on acceptance, I sure it will come.

Hope you are well.