Anyone w/other blood/bone marrow disease with ITP?

I don't know anything about Rituxin as I've never had it, only Prednisone and IVIG. My hematologist was very surprised when I asked him to test me for PNH. He wondered where on earth I was coming from with that question, until I reminded him he brought up a possible PNH diagnosis about a year ago. At that time I had been very sick. Right now my symptoms are minimal but I was reading about that, and that the symptoms in the early stages of PHN could easily be overlooked. My family has a very strong history of kidney problems and serious health issues, so knowing that, I asked to be tested for PHN. It will ease my mind knowing what the test results are. My Dr. agreed to test me for it, so he must have thought there were enough symptoms to validate the test. I'll keep you posted when I find out what the results are! Take care.

Kathy

Amber:

Rituxan doesn't usually even begin to work until 4 to 12 weeks after the first infusion. It's way too soon to tell if it will work for you. The week of my first infusion, my counts were 3. They didn't go up until the day of the fourth infusion...went to 150. That was a fast response by most standards.

But there can be exceptions. I'm one. My counts started to go up right after my first treatment of Rituxan.

I just hope it works and lasts....just don't know what I'll do if it doesn't.

My fingers are crossed for you! There's still plenty of time.

Thanks Sandi you'll be the first to know!

Well it has been 5 weeks since my first Rituxan infusion and my platelets are 4,000 today.
My doctor said that if I was going to respond, that I would have responded by now. Is that true? Now I have to have another Bone Marrow biopsy tomorrow because he is still not convinced that I have ITP and not Amegakaryocytic Thrombocytopenia. The first one I had looked like that, but he said it was a poor sample. The 2nd one showed lots of amegakaryocytes so he determined it was ITP. Now he wants to do a third one just to confirm that my marrow does indeed have plenty of platelet making cells. I don't know what to do....should I go ahead and do it or wait a couple more weeks?? My next line of treatment is cyclosporin. I am sooo frustrated right now.

Amber:

Many people have had a platelet response up to 12 weeks after the first Rituxan infusion. It's possible that your doctor has never seen anyone with a delayed response, therefore, doesn't believe it happens. I'm pretty sure Genentech used to actually post that information on their site. It's been a while since I've seen it. I didn't get a response until the fourth week, so you're not that far behind me.

As for the bone marrow biopsy, when was your last one?

Have you read this?

www.pdsa.org/forum/6-general-itp-discussion/11698-bone-marrow-biopsy-and-production-answers.html

Sandi,
My doctor is very familiar with ITP and has even done some studies and written a paper on Danazol and ITP. I would think that he would know about the response time that is why I am confused why he wants to start something else so early. I think the reason for the bone marrow biopsy is that he is trying to make sure that my bone marrow is actually producing the megakaryocytes that then produce platelets. If I don't have adequate megakaryocytes in my marrow then that means that my bone marrow is failing and the treatment would be different. My first one didn't have many of the cells, but the second one did. Maybe he thinks a third one would be a tie breaker?? He initially thought that the 1st biopsy was not a good sample, that's why he had me do the second one. I don't know, maybe I should tell him that I want to hold off on the biopsy for a few more weeks. I just know that he doesn't want me going around with 4K platelets either. May have to take prednisone for a few weeks until then just to keep platelets above 10,000. Why is medical treatment have to be so difficult???

A doctor can be familiar with ITP, but might not know everything about every treatment.

"The purpose of this trial was to examine the safety and efficacy of Rituxan in patients with ITP who had platelet counts of less than 30,000/µL and were refractory to at least one previous treatment. Each patient received the standard course of therapy -- 375 mg/m2 of Rituxan weekly for four weeks. Response was defined as a platelet increase of greater than 20,000/µL from base line in order to achieve a platelet count greater than 30,000/µL for more than one month duration, within 12 weeks of the first Rituxan infusion. A "good" response was defined as a platelet count greater than 50,000/µL on two counts one week apart and a complete response was considered a platelet count greater than 150,000/µL on two counts one week apart. Twenty-one out of 23 patients are evaluable after more than nine weeks since the first infusion."

www.gene.com/gene/news/press-releases/display.do?method=detail&id=4692

Amber - I think you're answering your own question about whether or not to have the biopsy when you said "If I don't have adequate megakaryocytes in my marrow then that means that my bone marrow is failing and the treatment would be different." Very true.

Thanks for the info on the studies Sandi. I sent my doc an email and explained to him that I wanted to wait a few more weeks to see if there was a response. I just hate to start a new medicine (cyclosporin)and then not really know if I responded to rituxan or not. I did remember that when I had it before, I was also taking prednisone during the treatments, don't know if that made a difference. I did agree to take 20mg of prednisone every other day to try to keep platelets above 10K. If I still don't have any results around 12 weeks then we will proceed with another biopsy and go from there. Do you think that is reasonable? I haven't heard back from him yet.

Here's one that quotes 8 weeks, but remember, this is a median response:

"A complete response, usually observed 3 to 8 weeks after the first infusion, was obtained in 46% of patients."

bloodjournal.hematologylibrary.org/content/112/4/999.full?sid=3f9f739c-2122-4fc4-bb18-e871415fed8e

It's possible that it may not work for you, but I wouldn't give up on it completely yet. It's a shame he didn't use the Decadron/Rituxan combo, which seems to have a higher success rate.

I think you have to do what is best for you based on symptoms. Hopefully, you will get into a safe range soon. I have my fingers crossed for you!

If I would have known about the Decadron/rituxan I would have definitely had him do it. I did take the prednisone last time with it and that may be why I had a better response. Darn it! OH well, I'm not giving up yet. My symptoms are really only petichae on my shins and a few brusies...oh and bleeding when I pluck my eyebrows! I always know they are low when I see this! LOL, strange I know... Thank you so much for everything I may still go ahead with the biopsy, but if afterward he still feels it's ITP, I'm going to hold off on cyclosporin until after 12 weeks.

My 20 year old dx with ITP, PNH and pit tumor 8 months ago...comorbidity they call it...2 auto immune diseases simultaneously...any advice please? PNH clone only 9%...platelets 50...low testosterone Hyperprolactinoma ....possible cushings disease...

There isn't much info about that here. All I can tell you is that if a person has one autoimmune disorder, the likelihood of acquiring another is higher. A few of us here have multiple autoimmune disorders.

Nearly 5 yeas ago I was diagnosed with ITP but 15 months ago I had a BM biopsy which showed pretty empty marrow.I then had very low platelets ,low Haemoglobin , possibly cold agglutinin anemia,,and very low neutrophils and the outlook was dim, possibly aplastic anemia. However 75 mg Promacta daily has normalised my red and white cell counts and has slowly improved my platelet count. I' ve not had another biopsy so don't know what the marrow is like now. Apparently it is now commonly used in aplastic anemia to good results.