side effects of tapering

[Jackie_boy]

I reduced successfully from 7 to 6mg a year ago and have been trying to reduce a bit further recently. My 6mg was split into 5mg in the morning and 1mg at night. I decided to split the 1mg tablet every few days and got down to alternate days. Going lower wasn’t a success however; I tried once a week missing the night dose altogether which was ok but once I moved after a couple of weeks to increasing the frequency of just half a tablet I felt very unwell the next day with all over body aches and shivering. Do these fit into the typical symptoms of withdrawal?

I’be now decided to stick to the 5.5 dose longer term.

I should add t hat I have been diagnosed with osteoarthritis in my pelvis and hands and also have sciatica, maybe as a result. I have to rely on daily painkillers - mainly am managing with paracetamol which makes it bearable and only take a codeine if really painful.

I always appreciate feedback from the forum so thanks in advance to anyone who can shed a light on this!

[PMRpro Ambassador]

This is the level where your adrenal glands have to start to produce cortisol again as the pred dose falls below the amount your body needs to function. This often causes fatigue and the other symptoms you mention. The only way to improve things is to stick at this lower dose until your body catches up - and it doesn't happen overnight. You need to be patient - it will improve.

[Jackie_boy in reply to PMRpro]

Thank you that gives me comfort and confidence to slow down with the taper. Every time I speak to the GP or haematology who check my blood issues they ask about reducing the dose and I think I felt a bit pressurised. I wonder if they actually know what it feels like?!

[DorsetLady PMRGCAuk volunteer in reply to Jackie_boy]

Nope!

[PMRpro Ambassador in reply to Jackie_boy]

Of course they don't!!!!

[DorsetLady PMRGCAuk volunteer]

Agree with PMRpro-sounds very much like adrenals struggling - rather than steroid withdrawal… so stick at 5.5mg for time being - but when you try reducing again, use a slower tapering plan maybe.

info on adrenals -

healthunlocked.com/pmrgcauk...

Slower tapering plans-

healthunlocked.com/pmrgcauk...

[Jackie_boy in reply to DorsetLady]

Thank you I really appreciate the opinion based on experience; I’ve been very worried about feeling so ill but will slow it right down now and stop feeling pushed by the medics to reduce- it’s their regular mantra!

[DorsetLady PMRGCAuk volunteer in reply to Jackie_boy]

Yes unfortunately it is.., wish they change it to ours -the lower the slower! 😊

[arvine]

some of your symptons sound dimilar to mine, osteoarthritis , spinal stenosis DD, osteo in back, hips, snd few mos ago hands(painful and stiff especially on waking), Ive haf other issues especially from first of year, tear in gluteus, and hamstring simply stretching across bef to get fiited sheets on, that happened in Jan this year, it seamed to heal up by late march so started taper from 5mgs pred to 4 using the dead slow method, so been on 4 for 3 mos or more, but ss time went on through last few mos , body hurts especially in waking, feels like been run over by truck, now last 4 weeks have had terrible groin pain, sometimes radiating to hip and back, and all I can take is tylenol, which barely touches pain, now I am wondering if tapering has caused a lot of this pain, and if adrenal function is to blame, I understood poor adrenal function mainly caused fatigue, which has only bothered me when doing moderate necessities, showrring trying to vacuum etc, but put this exhaustion down to pain in groin and hip. i have many back issues iver last 2 yrs , and have had spinal decompression therapy, MRI s discovering nerve root impingent over year ago, which subsided after 20 sessions of decompression therapy, bottom line wondering if these latest issues of body hurting on waking especially is result of poor adrenal function, see GP on the 30th and ask about a cortisol test, as well ortho dr has ordered MRI on both hips Aug 3 rd, long story, but keep looking for answers as since first of this year so many idsues,

[Jackie_boy in reply to arvine]

Absolutely agree on the awful morning pain and discomfort. TBH your set of problems sound worse than mine but there are similarities. I’m waiting for a hospital appt to delve into back and leg pain which may end up with MRI; hip x Ray shows bony spurs on my pelvis too so could be the cause.

Good luck with your tapering and treatment I’m just going to slow it down now after expert opinions elsewhere on the site.

[arvine in reply to Jackie_boy]

Ok and wish you best of luck and you can get diagnosis and pain relief