2K today

I hit a personal low. 2k today. I'm covered in red dots and have blood blisters in my mouth.
I like my new hema ALOT. He's very receptive to my opinion. I told him I didn't want to do NPlate like my old hema always wanted, as last time my platelets went too high and my arms went numb. Awful.

We decided to try a round of Pred and see what happens next week. I never dreamed I'd prefer Pred to some other treatment, but I do.

I hope that the prednisone is all you need to get your counts back up!

Best of luck and keep updating!

-Daniela

I know how you feel. I'm starting to feel the same way. Every treatment I have tried does not work. I only react to Predisone but that can have long lasting effects doing it for a long time. I have tried every treatment almost. Nplate put my platelets in the millions, the infusions only last for so long, had my spleen removed(was in remission for 20 years) until 07. And it come back with revenge. No treatments been working for me so far except Predisone. But my Herm. wants me off because of the side effects. She told me that Predisone can attack weak organs in the my body because of the other medical problems that I have. Not fun some times Right now I'm on Promacta and Predisone because of the platelets where 318 last week and dove to 4 in just 7 days.

DeeDee -
Wow -we are similar. I had my splenectomy in 1995, and it lasted until 2003 when a really crazy battle with the flu took me down. I've been known to plunge from good numbers to bad in a few days as well - and until a doctor is with me and seen it, they don't believe it.

NPlate put my counts so high that I felt terrible and my hubby even took me to the er because we thought I might be having a stroke. Not good. Plus, NPlate made me feel very out of it and always on the verge of passing out.

I upped my iron intake and that is helping me. My hemoglobin was 13.3 yesterday, which is good for me! So happy about that, becuase last time it was 10. Thank heavens for Floradix.

how much Pred are you on now? I"m on 60mg for a week, then see where we are. I had a spontaneous nosebleed last night that started again in the middle of the night. NO FUN. Happily though, some of my bruises have faded this morning.

I hope it works for you, Jill!

I never thought I'd want to stay on Prednisone for life either, but I do. I used to hate the stuff.

I think it's working - no more blood blisters in my mouth, but I got some red dots when I scratched last night. I can't believe I'm not climbing the walls on 60mg, but I'm surprisingly fine. No heart racing either, but my hemoglobin was the best it's ever been, so maybe that helps. Typical sweats, but no appetite whatsoever - what is up with that? Things taste funny to me.

I get a count done tomorrow. I don't expect it to be super high because I started so low, but I'm guessing I'll be around 75K....we'll see.

Thank you for the update 'plopper' I was thinking about you.
Very glad to hear that you are improving!

(I am no expert but I felt very similar at that dose):
I had no appetite from 70 down to 40 mgs...and my doctor said the reason I wasn't "climbing the walls" was because I wasn't fueling my body well enough---I started drinking a natural fruit and veggie juice just to make sure I was getting what I needed without having to eat: everything tasted funny to me as well.


All the best, keep updating!

I had funny taste too. Most things tasted of nothing although some sweet things tasted too sweet and savoury things tasted of salt. I ate a lot of melon while on pred as it was the only thing I liked the taste of.

Man - you guys are totally spot on!

When I was at anything above 20mg, I felt like I had the taste of pennies in my mouth, and I brushed my teeth a lot because it felt like there was a coating on my tongue. Also agree w the sweet thing - I'm an avid ice cream lover and during prednisone and dexamethisone I couldn't eat more than two or three bites. I couldn't even eat some Chinese foods because they were too sweet!

Plopper - how did you feel at 2k? Was there any noticeable "feeling" or was it all visible bleeding?

At real low numbers (though ive never been at 2k) sometimes I feel tired, and I have this weird feeling deep in my chest when i take a deep breath - I don't know how to describe it at all. It's nothing they've ever detected through a stethoscope, and it's a feeling like.... I don't know. But that's the only things I've ever "felt", and honestly, last time I hit my new low (9k) I thought my numbers were gonna be great because I'd been feeling so good!

Oh wow, I've never heard anyone say that about the chest thing before. When my counts are very low my chest feels very weird. If I carry anything heavy my chest feels as if something is pressing on it and I can't breathe properly. It's a very weird feeling.

Huh! Maybe it's just hard to describe and so secondary that no one has ever mentioned it? It IS a weird feeling - very hard to describe. So much so that I've never tried!

It's like if I tried to take a very deep breath and couldn't, or if I had breathed in water 30 minutes ago and was now fine.... Sort of.

Jill - sometimes it takes a while for those side effects to begin. I hope they don't!

So, a week on 60mg of Pred and my count went from 2K to 17K. Hema wasn't happy. I wouldn't have been either if I didn't keep all my old records. In 2009, on 50mg on Pred I went from 3K to 14K in a week, so when I'm this low, it takes more than a week. This was when we started NPlate and a week after NPlate and Pred and my count went to 988K.

Hopefully Monday my counts will be high enough that we don't have to take another Med. I'm so not keen on adding NPlate again. Those swings kill me. The numb arms and creepy scalp and that "I'm about to pass out...no, I'm ok feeling." I told him I didn't want to do it, and he suggested Promacta, but I worry about my liver on that med. I'm always worried about my liver, LOL. It's just one of those things, I guess.

come on Pred!

My theory on why I'm not as jumpy on Pred this time is that my hemoglobin is 13.3. Last time it was 7. It's amazing how a racing heart makes you jumpier, angrier -- out of sorts. I still have no appetite, though, and things still taste off to me, which I guess is good. I don't want to gain a bunch of weight again.