Reduction - what seems to be working for me...

Bones, joints and muscles
1

Recap -

I was struck with PMR in late January 2015 and diagnosed March 3 2015.  Had two 40mg  (?) kenalog (long acting cortisone) shots, one in my left shoulder and one in my right knee and also started on 10mg oral pred a day.   A few weeks later had another kenalog injection in my right shoulder. Then a few months later a repeat kenalog  injection in my left shoulder.  

These injections brought me TREMENDOUS relief.  

Have been reducing the oral pred slowly. Had to go back up after a major flare from the stress of losing my best friend suddenly to a brain aneurysm in September 2015.  

My most recent blood work from about 3 months ago shows everything is no longer elevated but is now within "normal" ranges.  

I still have some PMR shoulder pain, but it is manageable.  

I am now down to 4.25mg oral pred per day.  Like so many of you, tapering by even .25mg can make me feel just wretchedly awful for a few days...

For me, I have found that if I can "tough it out" for a few rough days, my body seems to eventually adjust.   I have been waiting until I have one week of feeling "comfortable" (not necessarily totally pain free, but where I'm managing well enough to get through my daily routine) - then and only then do I taper down by another .25. 

Some .25 tapers have been easier than others.  I have also made other small changes such as eliminating almost all sugary foods (I still allow myself a small treat now and then).   I avoid most all processed foods but do enjoy foods such as a portion of gluten free crackers now and again.  

I have not given up my nightly 2 glasses of red wine.  

What I'm doing may or may not work for someone else.  I feel there is a difference between the lingering PMR pain I have versus what I think is withdrawal/adjustment pain due to the pred tapering.  

On those taper/feel awful days, I do need much more rest. 

I have gained about 15lbs (ugh) but am trying not to worry about it until my PMR is stable. Hoping for remission.  

My heart goes out to anyone struggling with this awful disease.

Sharing in case my story might help someone else.  

Blessings to you all.  

 

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PS. My rheumy has tried to push methotrexate to get me off the pred faster. I have refused thus far, as I see no sense in trading one set of horrid side effects for a different set.  I asked her to let me just "take it slow" and she agreed that I could try that.  So far, listening to my own body is working as I reduce verrrryyyyy slowly.  The longest I have gone is 3 weeks until reducing by another .25.  The soonest was one week.  

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Hello maggiegrace, I have found that as I reduce through the doses, now I am at 6mgs the way I feel following a reduction hits me much harder now than when at the higher levels. I think it's because as you get the lower doses the 10% rule gets narrower and thus hits your body harder.

i follow the dead slow and almost stop reduction method but normally start at 1 day new, 4 days old and then when I get to 1 day each of the doses continue with that for 2 weeks then go straight onto the new lower dose. I only ever reduce by .5 each time.

now I am on the lower doses the fatigue I suffer in the 2 weeks following the total new dose is awful. Then the fatigue goes away and I'm back to my normal self. I always stay on the new dose for 4-5 weeks.

the only shoulder and top of arm pain I get us when I over do things and the pain is not pmr pain so it doesn't worry me. However, I am seeing my physio next week and I'm going to see if she can think of any exercises I can do to regain the strength to the tops of my arms because as I said if I do too much they rebel. That tells me that my arm muscles are weak so they need strengthening slowly.

inthink you have fine well to reduce to such a low dose because I have just reduced to 6mgs following diagnosis in December 2013.

all the best, tina

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I'm envious of you guys in a short time being below or at 10mg. I started at 20 only now at 17.5 and will start my next taper in March only by 1 or 1.5 mg. This is over 5 months.

I find it takes my body several weeks after the more than 7 weeks to taper to level out again.

I personnaly belive after reading everyone's comments slowwwwww is the best , but everyone is different.

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Hello, remember that we are all different. It's taken me 2 years 2 months to reduce from 15mgs to 6 mgs, with I flare xmas 2014. Regards, tina

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Hi Tina

You make me feel a whole lot better knowing it took you that long.

Thanks for the reply

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Me too. I have taken 3 years to get from 40mg to 7mg with one eflare a year ago. Two weeks ago I stayed on the 7mgs, solidly, having had a month of doing 7.5 and 7 alternately.  I am really struggling with fatigue and thigh /groin pain, which I am hoping will pass as I have my 70th birthday party to arrange in two weeks! I am assuming it's so difficult  because my own body is having to think about producing it's own steroids now.

So take heart. Some of us are real slow coaches in the reduction stakes!