lowest dose of pred worth it?

Hi all,
I've been alternating 5 and 0mg prednisone for over 2 months now and have stuck around 75k since about 3 months ago. I waited so long at 5/0 because we were leaving the country. Now that's over and I'm actually splitting the 5mg pills and taking 3/4 of it on alternating days - likely tapering for a few weeks until I'm off.

My question is, do you really think a dose of 5/0 (2.5mg/day I guess) is doing anything? I know some folks here have stayed on 5mg/day or 2.5mg/day for a long time but it's hard to know if it's actually doing anything.

I don't want to rock the boat but feel like I should try to get off this completely for my longer-term health. At least give it a go to see if I do okay.

Looking for your thoughts on this.

Thanks!
Giselle

I just have to add that I'm over the moon with my (what seems to be) stable count. It was a frustrating and difficult year of ups and quick, really low lows. Another reason for why I want off is we'll be trying for a second baby and I don't want to start pregnancy already on prednisone.

Hi Giselle,

Well good to hear you are holding steady in the 70's that's awesome. Last time I checked I was holding around 160, this was after holding around 80 for two months. If you want my opinion, it sounds like you've a really slow taper. If it were me and since you've been doing this for a while I don't think continuing the 5/0 for much longer is worth it for a couple of reasons. Please also note, take my advice as a grain of salt, I'm no expert and my field of expertize is far from medicine, but here are my thoughts.
1)You'll need to eventually stop taking the pred, why not stop now.
2)It's probably such a low dose that it's probably not doing much to help you.
3)Mentally you'll feel more at ease if you take control rather than hanging on by thread. To me there is something healing about taking control of the treatment.

4)And if you find that your counts drop, you know that you can always go back on prednizone or look at other treatment.

Good luck, keep me posted.
Michel

Since 5 mg's is less cortisol than the body makes anyway, I'd say no, it's not doing anything.

However, I have no explantation as to why my counts are staying up with only 5 mg's of Prednisone. It may not be the Prednisone at all, but I don't know.

Thanks for your comments Michel and Sandi! I think you're right. I realise I should ask my Dr but can you stop cold turkey after being at 5/0 for a while? I think so but it's scary to just stop!

I stopped after two weeks at 5/0 but then I felt normal at that amount. My fat face went away and I felt no ill effects on stopping. I'm not sure if a small amount does no good because I'd have thought that at low amounts it is in addition to what the body is producing rather than instead of the body producing steroid. But that's only my theory.

Giselle:

I've broken my 5 mg's in half before and done 2 1/2. You could try that.

oops,thought I wrote back but it didn't stick?

I've been cutting the 5s to et 1/4s and 1/2s.

Ann - my understanding was the the body only compensates for what is missing up to 7.5mg but I really don't know. It's hard to believe that 2.5mg isn't doing anything but I have to hope I can stay like this on my own. fingers crossed. thanks

It's wonderful you've managed to stay around 70k!

I'm my case, 5g has no effect whatsoever. I was doing 10g and my count was around 90k and a few weeks after tapering down to 5g, count drop to 2k.

I hope you can get off Pred as soon as possible.

Sorry to hear that Jey. Maybe it's worth trying something else for a while. At least you know you can try pred again since it does get a rise in count. This is my second time taking a pred taper and the result seems different. I did IVIg and decadron pulses too.

I too was on 5 mg every day or so and my hematologist and I were never really sure if it did anything. After months at this minimal dose, I was able to stay off prednisone for a year with counts of 80-120. Even if the effects were uncertain, at least the side effects are minimal. Unfortunately my remission did not last and now I have to decide whether to get rid of my spleen or try the low dose thing again.

maybe another short pred taper would put you in another remission?