So much useful information...

[Kael-gca]

Thank you to all the warm welcomes to this amazing site. Keeping me well busy!

The story so far...part 2.

My initial dose of 70mg Pred made me feel so well! I was full of energy, getting through the day without having to nap and minor ailments just disappeared e.g. my one knee, injured from swimming, used to be so stiff when I woke in the mornings. Sadly, I was under no illusion that the medication was a good thing as I was well aware of the long term effects on my body. I was also constantly hungry and very careful not to overeat. Not sleeping through the night either. All the classic symptoms. Nevertheless, I got through a backlog of chores while I was SuperKael. Then I started lowering the dose and began three days of hell.. to be continued!

[DorsetLady PMRGCAuk volunteer]

What sort of hell?

If you reduced from one day to next it may well be steroid withdrawal, if so it will only last 3-4 days and then should settle once your body has got used to new lower dose.

Just make sure the original pains don’t return.

As a matter of interest how much did you reduce?

[Kael-gca in reply to DorsetLady]

I reduced the dosage to 40mg as advised by Rheumy. I lost my super strength but felt no ill effects. I did get a problem later when dropped to 30mg. My inflammatory markers began to rise so went back to 40mg. Now reducing the dose again in the hope l have a better experience. My 3 days of hell, which I will describe in part 3, wasn't linked to the dosage but could be useful information for new pred users.

[DorsetLady PMRGCAuk volunteer in reply to Kael-gca]

That’s a very big reduction - if it was in one go! Over 40% - a recipe for disaster, methinks.

My first reduction was from 80mg to 60mg which was manageable (after 2 weeks when everyone was happy my remaining eye was saved) - but I then stayed at 60mg for 8 weeks before reducing monthly and only 5mg a time! Until into 20s.

Mantra - do not reduce more than 10% of existing dose!

Good luck.

[Kael-gca in reply to DorsetLady]

I just double checked as it did seem a big drop but it was what was advised. I think it might be due to the fact that my inflammatory markers dropped very quickly. (ESR went from 85 to 26. CRP 159 to 8). Been on 40mg for 4 weeks, 35mg for a week and today is my first day on 30mg. Feeling OK so far.

[DorsetLady PMRGCAuk volunteer in reply to Kael-gca]

Yes your inflammation markers should have dropped quickly - that means the Pred has got to grips with the inflammation. (Me ESR 68 down to 6, CRP 25.2 down to 2.4 within 4 weeks).

The art then is to keep the inflammation at bay (it continues to be produced every day) with the right amount of Pred. Reduce too quickly and you may go below that level without realising it! That obviously happened between 40mg and 30mg for you.

Personally I think you would have been better at 35mg for at least another week before dropping. It can take at least a week before a flare starts if you have gone below YOUR level, so just be sure everything is okay.

[Daisychain12 in reply to DorsetLady]

Brilliant advice as always xxxx

[SheffieldJane]

Oh dear.... I think we know where this is going. Enjoy it while you can and try not to overdo things, you are still ill!