getting to know my body

I recently had a drop in numbers from 50 to 33. I'm so thrilled! Why ? This was the first time since diagnosis (about 8 mos.) that I noticed the signs - went to to the Hemo and confirmed my suspicions. Instead of surprise your # up or down I had at least more control.

I also felt educated enough to tell my Hemo who is well meaning but a bit clueless as I hav e learned from this site to say no - do nothing give me a week as my numebrs like bounce. So today I find out treat or not.

On a side note - my dr likes to give me steriods for a week - crash my system so to speak. But I see alot of people seem to be on them long term. The last crash raised my # a whopping 10 points and I was close to suicidal during the crash. Its funny I dont feel to abd while on the steroids. The first day off is not great, the next few days UUGHG I have to post sticky notes to remind me Oh yeah this is a side effect not a bona fide DOWNWARD SPIRAL of depression. Anyway I just wnted to stress how good it is to know your body!

Julie
:woohoo:

I agree with you Julie. I've been doing this for about 7 months now and am still learning "stuff" about my body. It's a sense of peace/relief to be able to not worry so much about the little stuff.

People react to the week or 10-day course of big prednisone so differently. My husband developed "steroid psychosis," and his doc took him off it before the week was out, and then it took him days to recover--and it never helped the problem for which it was prescribed. (Now it's listed on his record as something he should NOT have.) But I've had friends who felt euphoric on the same course.

I have bi-polar. So my psychiatric doctor urges against prednisone, while my hematologist urges for it.

Speaking of well meaning doctors, I'm with you in taking a stance on your treatment. I urge the same things with my doctor (to watch for a bounce back in the counts). It was funny he was explaining treatments to me yesterday (I knew them all from theses forums haha) and I'm worried about cost. So he says prednisone is the first option usually. Then he mentions spleen removal, and THEN the other methods. So I replied "So the spleen removal is the second cheapest alternative... really?" Of course he was like ... no. I just get irritated that this is the second time he has recommended it before other treatments.

Wish I could say the same at the moment. My platelets seem to be going up and crashing back down at the moment. I am on fortnightly bloodtests and 10mgs pred every day and one week platelets are 11, next fortnight 30, next fortnight 12, then two weeks ago 29 and this week back down to 13. I am eating healthy, and exercising and feeling the best I have in a long time and have no idea why such a big difference one way or the other every 2nd week. When they are back down really low, I don't even seem to be getting any more petechia or bruising, so I can't even tell when they are lower or higher at the moment.

Could someone please tell me what you mean by "knowing your own body?" When your counts get low, do you feel different physically, i.e. tired, or do you mean more in the way of the petechia or bruising?

Susan

Some of us can guess pretty accurately about our platelets. I used to tell the nurse what mine were before I got my count and I was almost always very very close. Other people don't get symptoms that match their counts.

My theory is that I was getting symptoms not from the ITP itself but from the conditions to which my ITP is secondary - so when they acted up my counts also moved. Then there were other things, like when my counts are low I can't drink any alcohol without getting a bad headache.

Anyway, some people can tell and some can't.
Erica