Very low steroid dose... Worth it???

So long story short - I've been secretly weaning myself off steroids. Prednisolone to be exact. I came clean with my consultant today and told him I'm down to 2.5mg a day. He basically said that it wasn't worth taking a dose that low as my body should make that much of its own natural steroid. He told me I can stop taking them and see what happens.

I'm so pleased about that!!! However.....

Lots of research seems to talk about people with itp having lots of trouble coming off low dose steroids. Is that 2.5mg? 10mg? 15mg?? I guess I'm just trying to predict whether my counts will crash out. I'm going to try coming off them anyway, I just wanted some insight into this itp research. Has anyone managed to get off a low dose steroid and keep a reasonable count for any length of time (& right now by reasonable, I'm talking a count of 20ish).

Thanks Kat x

Oh & I've no real symptoms to speak of just now. My last count was 60 two weeks ago on pred 5mg & 2.5mg on alternating days

I do have one bruise on my foot, but I did balance a garden table on it to get it across the garden and into the sun. Doh!

Kat:

I wouldn't worry so much about a platelet drop from the 2.5. That low of a dose probably doesn't do much at all. You can have problems with withdrawal though. It depends on how long you've been on it. Try going down by 1 mg if you can and see how you feel. If you only have 5 mg. tablets, then you couldn't really do that.

Kat, the reason for steroid tapering is not just that your production is suppressed, but also that on a cellular level your body has developed resistance to glucocorticoids (similar to insulin resistance) and that resistance takes time to diminish. Thus your body may still need more cortisol than your adrenals can produce.

That said, your body will let you know if your are coming off your steroids too fast, and with counts over 100 you do have some margin of error.

Thanks sandi!

I only have 2.5mg tablets and I have been on steroids for 16 months now. Did have a three week break in October last year though that didn't feel too bad. My haemo reckons I can just stop 2.5mg but I'm planning to alternate days between nothing & the 2.5mg to try & reduce the side effect of stopping.

I really hope my count doesn't drop too much

I second what Sandi said. My hema told me that under 5mg probably makes no difference in your counts. For me i just feel awful if i go down too fast. Most recently, I was on for 9 months Last year feb thru Dec. When i got to 2.5mg I stayed on that 2 weeks then did 1mg for 2 weeks then off. Even with that i got fatigue, muscle pain, joint pain and headaches. Still having some of those symptoms 10 weeks later.

Kat:

Alternating every other day would be one way to do it. Or you could try to break the pills in half.

Quick update: as usual - itp forum members were right

I'm off the pred & my count "seems" to be stable after 3 weeks at 50 (fingers crossed. & touch all wood in sight!!!).

I alternated 2.5mg with nothing for just 3 days & then just couldn't be bothered so stopped. I've felt absolutely fine doing it - no withdrawal symptoms at all - except a couple of pre-bedtime snoozes on the couch which I could actually get used to!!

I'm just hoping it lasts for a little while now!

Thanks all

Kat

Urgh - count just dropped to 34.

Can't be the steroids as they've been out of my system for nearly a month.

I know 34 isn't bad - just really anxious about it dropping any further