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Posted 10/13/2015 10:12 AM (GMT 0)
Hello all!

A quick update on my previous post - my partner and I have had a big chat, he has turned a corner and is being much more supportive (I think he may have even read the thread on here- so thank you all for your support and help!)

Now to the new drama.... I'm on 10mg daily pred, tapered down from 40mg (with 20mg for four weeks mid way), I drop to 5mg on Saturday.

Last time I took Pred (a year ago), I got emotional, and a bit of moon face, this time has been better emotion wise, but my word everything else has kicked up! Even my neck is joining in with the moon face! The thing is, everything hurts (apart from my calves!), my neck, shoulders, arms, thighs, fingers and toes, and forearms! My throat is sore, my head aches, my eyes are 'dull', I'm exhausted, and I get the worst cramps in my hands and feet (driving is quite tough!). I know it's all just 'roid-withdrawal, but is there anything I can do? I feel like curling up in a ball under a duvet and staying there until it goes away! I've never experienced anything like this! It's like I'm catching the flu, it's been like this for a couple of weeks, should I contact my IBD team, or do I just have to grin and bear it (I fear I may now the answer!)..

Another weird one - I've had to stop taking my olsalazine, because I got totally backed up (four days with nothing but grumbles!), so I stopped, and two days later was going once a day! Odd!

I'm pretty sure I will never use Pred again!
Posted 10/13/2015 11:20 AM (GMT 0)
Did you drop from 20mg to 10mg? If so that sounds like too big a drop. You can get pred in 5mg, 2.5mg and 1mg tablets, so you can up your dose back to 20mg and then take the taper at a slower rate, which should reduce symptoms. The symptoms are always worse at a lower dose for some reason - I suppose the adrenal glands are missing their 'fix'.
Posted 10/13/2015 11:24 AM (GMT 0)
20 to 10 is a big jump and it sounds like it is throwing off your adrenal system. You could try adding maca root powder to help support your adrenal system, 1/4 tsp a day makes a big difference for me.
Posted 10/13/2015 11:36 AM (GMT 0)
My taper (as prescribed) with 5mg tablets is;
8 tablets/daily for one week
six daily for one week
four daily for four weeks
three daily for one week
two daily for one week - this is where I am now
one daily for one week

I'm loathed the go back up to three again, as surely I'll just experience the same when I come back down? I only have 5mg tablets, and enough to get me to the end of the course.

I'll look in to maca root - thanks momto2boys
Nicecupoftea - they really are missing the fix!!!
Posted 10/13/2015 12:55 PM (GMT 0)
Sorry to read this! It really is the devils tic tac!!!!
Posted 10/13/2015 1:07 PM (GMT 0)
I'm loathed the go back up to three again, as surely I'll just experience the same when I come back down? I only have 5mg tablets, and enough to get me to the end of the course.

You will if you drop by 5mg again. Make an appointment to see your GI or GP, explain the problem, and they should be willing to prescribe 2.5mg or 1mg tablets for you. For my last steroid course, I tapered the last 10mg at the rate of 1mg/week. That wasn't normal for me - like you, I usually tapered at 5mg/week - but I ended up being so steroid-dependent, I would have seriously crashed and burned. As it was I struggled, but I had been on steroids a lot by that point.
Posted 10/13/2015 1:09 PM (GMT 0)
A prednisone taper should be flexible, not rigid. If you're experiencing withdrawal, then delay the next drop for another week. You might even want to take an extra half tablet every other day to help with withdrawal symptoms (take your 10mgs one day, up to15mgs the next, then back down to 10mgs.. etc). Delaying drops, using smaller drops, and alternating between upping your dose one day and down the next are the best tools in your toolbox. It gets tough around the 7-10mgs mark as that's roughly the equivalent your adrenal system naturally produces. Your adrenals have been asleep for the 8 weeks you've been on prednisone, and must awaken and begin producing otherwise you get fatigue, aches, etc.

The longer you've been on prednisone the slower taper and smaller drops you must do to successfully get off prednisone. I did a continuous year on prednisone, and was doing 1mg drops every two weeks and still felt withdrawal for the last 5mgs.
Posted 10/13/2015 1:30 PM (GMT 0)
When I got low on my steroids I was told ( equivalent to)
2 weeks at ten
2 weeks at 5
2 weeks of every other day 5 mg and nothing to trick adrenals into making it
Your body make the equivalent amount of steroid ( cortisol) as 5 mg of pred
Posted 10/13/2015 1:48 PM (GMT 0)
Thanks all for the advice - I've emailed my GI to ask for a fresh script of smaller dose tablets, hopefully I can get that without having to endure a two hour sit and wait for an appointment in clinic! If not, maybe my GP will consider helping..!

It really is awful! I'm supposed to be starting a course with work tomorrow but I can see that being delayed until I can sit and pay attention for more than 20 minutes at a time without nodding off!

Thanks again all :-)
Posted 10/19/2015 9:57 AM (GMT 0)
Just an update - I received an email from the IBD clinic (one of the Gastro nurses), she said she'd spoken to one of the GI's about my symptoms, and that I hadn't be on steroids long enough to be experiencing withdrawal, and that it was just flu and I should carry on.

Well, I stopped being able to cope, and on Wednesday I left work before lunch, Thursday I spent curled up in a ball on the sofa, Friday I didn't take my pred, Saturday I felt like I was going to die, still no pred, Sunday I woke up feeling almost human, still no pred, and today I just have a slight headache. No pred.

Obviously I know the dangers of just stopping, and I told my partner to keep an eye on me, he had my blue card and details of my taper to hand just in case. I just couldn't cope any more! I knew it wasn't flu - I've had that before, and I've had these symptoms coming up two weeks! So I'm off the pred a week early and feeling better for it! Woohoo!!
Posted 10/19/2015 12:08 PM (GMT 0)
Good job ! Definitely not a tactic most would (or should) take, but hey, if it worked, sweet !

But the question I would be asking now, is how do I avoid needing it in the future ???? What is your plan for a long term no pred life ?
Posted 10/19/2015 12:48 PM (GMT 0)

ushippedyourpants? said...

But the question I would be asking now, is how do I avoid needing it in the future ???? What is your plan for a long term no pred life ?

I don't have a plan really.. at least, not one that seems terribly solid! I would love to never take anything ever again, but I realise this isn't possible! I'll stick with my 2g a day of Olsalazine, that gives me wiggle room to increase it if needs be, I'll also keep my salofalk bullets on hand should they be required..! Other than that, just be sensible about what I eat and try and stay active.. I find the winters hardest as cold and flu treatments seem to bring on symptoms, so I'll try and keep away from them, too!

I won't be going on steroids again-I've already told the doc that! Twice is enough for me! shocked
Posted 10/19/2015 12:58 PM (GMT 0)
Sometimes I think it's best to just get the misery over and done with, rather than dragging it out interminably. Glad stopping the pred worked out so well for you.

I was recently offered steroids by my IBD nurse on the basis of my blood/stool tests, but I basically told her no way, José. I must admit, a part of me does want to go back on them to obtain the near instantaneous relief. The instantaneous relief which won't last 2 seconds, so there really isn't much point.
Posted 10/19/2015 1:07 PM (GMT 0)
@NiceCupOfTea I have to admit I wasn't expecting the relief to last - it didn't last time! But (controversially) I stopped taking my Olsalazine once I hit 20mg, and picked it back up on Saturday, and so far, so good. Sometimes I think you can take too many meds and our bodies don't know what to do!

I'm content with going a couple/three times a day if it means I can stay away from steroids in future! I think it's a comfortable trade-off!
Posted 10/20/2015 5:24 AM (GMT 0)
Pred is one of the most dangerous drugs you can take!

Aims, I would use the enema or suppository nightly now as maintanance!

Good luck
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