ADULT ITP

I will being going tomorrow for the Rituxan infusion. There is so much negative info versus the little positive that is out there. I have been on Prednisone for over six months and & have to stop. During this time (October), I came down with Pnuemonia.

So my opinions are limited right now. Sure hope I could be one of the few positives. That's the way I am going......positive atitude.

I have absolutely no symptons either than slight brusing. You would never know anything was wrong in the inside!

BJ

Where are you getting the negative information? There are a LOT of positive stories here.

I had a mostly positive experience. The good news was that I had a great response - twice. The bad was that I had a rare side effect (serum sickness).

No symptoms is good!

Hi. I was told 2 years ago i had I.T.P. i was put on steroids and last October i had the IVIg for 5 days! I am now done to a blood count of 21 and have to go for blood tests for the next 4 weeks too see if my bloods try to level themselves out (which i no the wont because i've been hearing that for a few year now) can anyone tall me what the next step is! I am just really sick of been not told anything apart from what my blood count is!!!!!!

Cath - until your doctor decides to treat again, monitoring is the only thing to do. At what count does he suggest treatment?

I have no idea. the last time i got the IVIg my count was at 14. just tired of going to the docotrs all the time and making the trips to the hospital.

Poor you and it possibly quite a treck for you. Is the consultant approachable? If they are then prehaps you could say to him what you said here about being tired of going to the hospital all the time and not knowing what is going to happen next. If you are blunt then yes it would put their backs up. But if you gently explain it and at a loss then they might well explain what they are doing a bit more.

Some times they really do wait and see. I think 17 is considered safe as such and that is why they can afford to wait and see? But if its really inconvientant to you then they may be able to work something out with you.

With me the first line of treatment is steroids, normally about 60mg. All previous times I had a 5 day course of IVIG. This time been the fist time I hadn't (basically because I was going away and really wanted to be out and if they started it I wouldn't have made it... As they admitted me they told me two days of steroids then steroids and ivig. As I said the ivig never happened and whether it was to do with going away I will never know. But so far my platelets are a very healthy 240 at the last check)

But as you will see from reading accounts on here, everyone has a different treatment. It is all the better for you to have wait and see though I can completely understand the hassle of hospital check ups on a regular basis. Have a chat with them the next time you go and say how its getting to you etc. If nothing else they may explain why they are doing what they are doing and that might help.

good luck and yes I do understand the frustrations of always being at the hospital

Thanks for the reply. You are correct.....no systoms are a good thing. When I read info on Rituxan infusion, people had problems with it.

I am going for my third infusion tomorrow and the last platelet count was 38. The infusion was nothing like I expected. It went very well. NUMBER ONE, everyone at the hospital is the best ever! I was able to relax more for the second infusion because I knew what to expect. You Just go with the flow.

Hi, I was told any count above 30 is good. I have to off Prednisone because you cannot stay with this for long periods. My medical staff is very infomative. They even have a sheet you fill out for every visit......if you have any changes.

Are you asking questions?