Platelet drop and the prednisone dance

So here's a quick sum up with my count and prednisone:

Count start: 14
Week 1 of 60mg: 88
Week 2: 78
Week 3: 95
Then I dropped the pred to 50mg
Week 4: 42
Week 5: 35 (<-- that was yesterday)

So my question is: GAH!... okay.. that's a statement.. But really.. It seems like the presnione isn't reeeeaallly working, and I just want off of it! I have NO symptoms (bleeding gums, nose bleeds (I've actually never had a nose bleed in my life), etc). Should I just keep tapering and just watch my body for pitikea and bruising and not worry about it?
I took 40mg yesterday after my labs, cause I just really really really want to be done with it. And all last night I couldn't sleep cause I was freaking out that my count would plummet or something.

I'm going to the county clinic on Friday for a walk in and dear goodness hopefully they can refer me to a hematologist! This is nearly impossible to do on my own... Thank goodness for this site! I would be completely lost otherwise!

Kate

Sorta seems like it DOES work, you had 14, you took 60MG, your numbers went way up and stayed there until you dropped in dosage. But it also seems that you need a massive dose to get your numbers up. Taking 60MG of pred. for any long period of time is unacceptable - you need to talk to a doctor about other options.

Just my opinion. Hang in there!!

Yeah.. my thoughts exactly. 60mg is NOT worth it... Platelets up and have the worst quality of life ever... or low platelets and a MUCH better life.....

I think we all will react differently to different levels of Pred.... and our individual Doc's will prescribe various Preds doses and/or drug regimens..... but nothing consistent as there is no consistent response. At my first ITP encounter the Hemo Doc started me at 80mg.... then tapered off weekly over several month. THAT was really a trip. Six years later I still bounce between 10k and 180k depending on whether I take 15mg or 20mg Pred. Somewhere there will be some stability...it may take a little time to find it.

Kate, I remember bouncing counts, sometimes regardless of dosage. In general your counts will drop when lowering pred but it still can spike ocassionally. My advise would be not to taper anymore until you have a plan B in place. At least the pred is giving you some improved counts. What would you do if you woke up to a count of 0. I'm not trying to scare you, just hang in there.

Kate,

High doses of prednisone worked for me, but lower doses did nothing. My personal opinion (which has no basis in anything but my own experience) is that any extended period on steroids when you aren't having symptoms isn't worth it. You are right that quality of life comes into play.

I agree, it does become a quality of life issue. You do need a hematologist (but you already know that). Having a low count isn't in itself an emergency, but not having a plan in place in the event that happens isn't a good idea. I'd consider staying at the dose you are on until you have an actual doctor that is experienced with ITP.

I agree with everyone that quality of life is something to consider. I took prednisone as well I hated it I'd rather just be careful and have a low count than have a higher count and feel crappy all the time it was horrible! (can I say crappy?) All the side effects are not worth it.

Like everyone has said, quality of life is important. I agree with Sandi, though. You shouldn't keep tapering off until you have a plan.

I've been on Pred for a few months now, began tapering down from 20 to 10 on January and with 10mg I managed counts of near a 100. As soon as I hit 5 mg, (two weeks later) my count dropped to 2k.

So be careful.

High counts to you.

Good night! 100 to 2... So what did you do?

Kate, per my earlier post, a Pred change of 5mg swings my count betweem 10k and 180k. After 6 years, I am now on 'Plan F' will be starting Promacta May 10th. As mentioned before, you should be considering a Plan B.....and there's a lot of options available. I hope you find some stability and can keep the count in the 'comfort zone'.

Wow! That's just a crazy huge difference!

I FINALLY got an appointment to get established with a hematologist on Monday!! I'm very excited about that.. Finally someone who knows something more than the definition of I.T.P!

Can you feel it when your count is low?... or is the only indication symptoms? (bruising, bleeding, etc).. When my count dropped from 95 to 42 I SWEAR I felt it... I even said to my mom that I thought something was 'wrong'.. and when I got my labs a few days later, sure enough! Maybe it's just coincidence.... *shrug*

I feel tired when my count is low. I feel it when I go up the stairs. I find my legs are like lead and I can't do it so well.