I'm Back! I see Sandi is still here...

Hello I'm back to the ITP family! I see some familiar names still here. My story is that I was diagnosed in Feb of 2006. Tried different things and took Rituxan in Oct. 2006. Things went well and the last time I saw my hema for a check up was May 2008. So it looks like the Rituxan lasted 4 years and 8 mo or so. Actually I have been thinking it had started again when I started seeing strange bruises here and there. Last time I never got bruises, or any symptom except for the counts and extreme fatigue.

Just yesterday I woke up (in the middle of the night) with some strange something in my mouth. The second time I spit it out and saw it was a blob of blood. Sigh.

Luckily I got an appointment to see my hema that same day. (But they couldn't find my records. They had switched systems.) (He told me he recognized my name, but couldn't place me until the office said ITP. Then he remembered everything. Better than a computer ha ha.)

So my new adventure begins. I will be writing my saga in the Natural Cures section if you want to follow me along on my new journey. My hema and I came up with an agreement on what to do now. (Is that enough of a cliff hanger to get you interested?) Hi to Sandi and others who might remember me. Sorry I seem pretty long winded today!

Hello there! I do remember the name, but sorry, not the story. My memory is not what it used to be! My fault.

Are you going to try Rituxan again?

There's no particular reason for you to remember me. You have 100's who come and go. But there is only one Sandi on here! I was pretty scared to try Rituxan but it all went well enough, as long as the nurses didn't try to rush the infusion. I was usually the last patient out the door at the end of the day!

What is the success rate for the second time on Rituxan?

I am hoping to have cataract surgery in the early part of July, so I was planing on checking my counts soon but then I had the blood incident. Because the Rituxan takes a while to kick in, I may have to take Pred for a few weeks to get through the cataract operation, if the acupuncture doesn't work out.

Hi Anata... I have talked to several people that have had rituxan more than one time and are pretty successful. I am not one of them it lasted for about 2 years and then when I went back for another round after the 3rd treatment I started having negative side effects and stopped the process, but everyone is different. I can no longer take it. Keep high hopes. I pray for much success for you and your next round of rituxan!

Anata - the success rate for second and third rounds of Rituxan is not bad. I'm in remission from round two and have been for 6 or 7 years - I lost count. There are a few people who have had longer remissions the second time around.

Good luck with the surgery. It doesn't seem like too invasive of a procedure, so you might do okay with less than normal counts.

Hi Ananta,
I am just about right with you. I was on this forum alot in Feb 06 and I too was grateful for all the information and support from Sandi. I took Rituxan in Oct 06 and was in remission until a few weeks ago. The thing I was noticing was extreme fatigue. I had some bruising, but not that much. I am back on prednisone and the doc today was recommending another round of Rituxan.

Wow! We are following each other! Cool! I am thinking that I definitely want to be over this and into a remission before December. I have an overseas trip in the planning stages for Dec. But, you know, the "plans of mice and men!" Rituxan again in the fall could probably get me there... We'll see.

Ananta, I have had cataract surgery on both eyes. The ophthalmologist told me my platelet count was not important--there is no bleeding. Both cataract surgeries were very successful. It's one of the surgeries they almost always can get right.

Thanks Karen. That's really good to know. Especially since I just found out my hema is on vacation and will still be on vacation when I have my appointment with my ophthalmologist to plan my surgery!
Will my being on prednisone effect it?:huh:

Dru, I just found out another thing we have in common! You have hemolytic anemia and I have neutropenia (low white blood cells). I am assuming your low red cells is also autoimmune. My white blood cells follow my platelets.

When I went to the doc yesterday, my platelets had fallen from 302,000 to 106,000 with the prednison taper. She filled out an insurance authorization for Rituxan for me and we will see how my counts are next Tuesday. I think she would rather that I go ahead and try another course of rituxan this summer as the prednisone is making me crazy and working but only in the short term.

Dru, I'm a little behind you on the pred. Today is my 3rd day at 60mg. I just had my cbc done. Platelets were 27k and the whites were back to normal. I really just want to move on to Rituxan and forget all this ITP for a few more years! But I'll have to wait until my hema comes back from vacation. I have an appt with him on July 5th. But he comes back on the 29th Maybe he will sneak into one of my cbc appts for a brief chat.