Week 3 and count has gone up!

Morning all

Well I went to the hemo on Tuesday. Last week was my 3rd week of taking 60mg predsilone and my count went from 5 - 23. I know Im only 3wks into treatment but with a jump like that I feel cured!! lol.. I know its very early days and I shouldnt count my chickens but Im hoping when I go back next week they will have gone up again.

I told my hemo that I really really dont like the steroids and he said that next week we may try injections.. 1 a week for four weeks. Not sure what they are? He talks so fast and I didnt really feel comfortable asking questions. When I go next week though I will be taking a pen and paper to write it all down so that I can research it.

One thing I wasnt happy with though was the fact that he told me he has written to the surgeon to advise that my spleen may need to come out shortly.. he hasnt even asked if this is what I want. I only discovered I had ITP 3wks ago and hes pushing to go down this road. This is something I really dont want and I will be making that clear.

Anyway... heres to another uplift this week!!

it wasnt till 7 months went past did I get my spleen taken out.and after numerous tests .bome marrow test,liver spleen scan ,lupus ,stomach parasite and a host of others.he offered rituxin but i choose the spenectomy..I agree with you ask questions.

Red girl, if you don't want a splenectomy, your doctor can't force you to have one! Remember, it's your body. If you're not comfortable asking your doc questions, maybe you need to find one you can be comfortable with. My hema mentioned spleen removal a couple of times, but since he couldn't prove it was my spleen causing my ITP, I decided not to go that route. It was 2 years later that I decided enough was enough. And it didn't work. That's something to keep in mind; a splenectomy isn't a cure, it's just another treatment that might/might not work. Every one is different. I'm glad to hear your counts have gone up!

Rituxan is given once a week/four weeks, but it's an infusion, not a shot. Could that be what he said?

Keep us posted on how you're doing.

Congratulations on the higher counts! I believe no one likes the steriods, but apparently they work for some people! I'm with Cindy, if you not comfortable asking questions you either gotta get comfortable or find a doc you can be comfortable with! This ITP is quirky. Though not life threatening in itself, if does mess with your life and you gotta be in charge of the treatments. Remember, there is no stupid question. Praying with you for even higher counts next week!

Hi Redgirl, Like the others said dont be rushed into a spleenectomy, your only 3wks in and only tried pred which doesnt seem to be working much. For the 60mg your taking it seems a very high dose to get a small result. The pred stopped working for me at 60mg and i was put on 150mg Imuran, 3yr later im off drugs and still have my spleen. There are lots of different things to try dont give up yet. You will get there and youl be fine just take it easy and learn all you can.
Julia

I'm not sure I'd be comfortable with a doctor who doesn't talk to you. It's not up to him to consult a surgeon for you. YOU choose the surgeon when and if you decide you want surgery. It seems very soon to even think about that.

Second, I believe he is talking about Rituxan. It's not a shot; it's an infusion that takes between 6 to 8 hours. I think you should have been told that so you can plan that day accordingly.