Wife discovered with ITP 3 months back .....

Hello Everybody,

I was a silent observer of this excellent website ever since my wife was diagnosed with ITP back in 03/2010.This is how it started.
She had minor bruise on her left hand we waited for a week it disappeared, then we saw another one on different hand, so we went to our regular doctor, he took blood samples and told us it is common in women her age(27 yrs.). Next day we woke up to a call from him, he told, the platelet count was pretty low 16K and asked me to take her to emergency room and get platelet transfusion. So, we went to ER, the doc there did many different blood tests and gave her 80mg Prednisone, which she took in the hospital, and on the following day as well. Apart from randome odd bruise there were no other symptoms.

Two days after that we had appointment with Hemo, at that point(03/15/2010) the count was 72K so, he suggested to reduce the prednisone to 20mg daily.

A week later in a followup chekup on 03/22/2010, the count was 50K so the pred. was teperred to 20-10 alternate.

2 weeks later 04/05/2010, the count dropped to 30K.

At this point Hemo was already talking about Rituxan, as he said Prednisone is a nasty stuff and can not be taken for long period of time. we decided to wait 1 more week on 20 mg pred. and see.

Folowing week on 04/15 we checked again the count was 45K. He performed the biopsy of the bone marrow and it was OK. that concluded that her bone marrow is making enough platelet(thank goodness).

Rituxan started on 04/21/2010: the count on the day was 62K

1 rituxan 04/21/2010 Count 62K (10 mg prednisone)
2 rituxan 05/10/2010 Count 38K (10 mg prednisone)
3 rituxan 05/19/2010 count 40K (10-5 mg alternate prednisone)
4 rituxan 05/26/2010 count 04K (since the count was so low, she was given 20mg Decatron via saline and 20mg pred)
5 rituxan 06/02/2010 count 180K(10 mg prednisone)
6 rituxan 06/09/2010 count 40K (10 mg prednisone)
7 rituxan 06/16/2010 [strike]Scheduled[/strike] count 36K (10 mg prednisone)
8 rituxan 06/23/2010 [strike]Scheduled[/strike] count 37K (15 mg prednisone)

I am not sure what will be her count tomorrow when we go for 7^th round
rituxan. I am not sure why the count jumped to 180K and came back . I am not sure about anything now. Is it too early to say Rituxan is not working for her? If it's not working what's next? We are married for over 2 years now and wanted to start our family. Will it be possible with she having low counts? Or may be its her tendency to have low counts. We are still cursing the day as why went to doc.

Hello sushpop Sorry you had to find this site, but glad your here! ITP is a strange thing. As I'm sure you've read no one acts/reacts the same to the disorder, or the medication. Please don't curse the day you went to the doc, really, it's a good thing. I'm already done with child bearing, my girls are older now, 13 and 16 but I don't know why you couldnt' have children. Obviously you need to discuss it with your doctor but there are women here who have ITP and have normal pregnancies. Do more research. I'm kinda curious why she's getting 8 straight treatments of Rituxan. I thought the norm was to have 4 then give it some time before starting another round. I believe for some it can take weeks and weeks after treatment stops for it to show signs of working. I just finished my 4th treatment and am seeing the doctor tomorrow to go over everything. My count last week was 288, but I think that's from the NPlate I was on at the same time as the Rituxan. Maybe that's what's going on with your wife and the Rituxan/prednisone mix. I dunno.
Please let us know how she's doing.

Wow. First of all, I'd like to say that while it's true that Prednisone is nasty and a person shouldn't be on it long, there is a kind of protocol. Dropping the dose like that will most likely result in a fast platelet drop. Your wife had a good initial response and had she been on it longer, she may have sustained that response and may not have had to move on to Rituxan. Most ITP patients use Prednisone for a few months. No one likes it, but it can be an effective treatment. I wouldn't consider 8 Rituxan treatments any safer than a few months on steroids.

As for Rituxan....very fast to get to that treatment and 8 infusions is probably overkill. Recent research shows that even one treatment may be enough for an ITP patient and the usual is 4. That's a lot of Rituxan when it may not be needed. Yes, it is too early to tell if it's going to work. The average response time is 4 to 12 weeks after the first treatment.

Recent research also shows that bone marrow biopsies do not prove that there is adequate platelet production. I can give you some articles if you want them. Many hematologists are not aware of this (too many, it seems). That is neither here nor there though...the treatments are the same.

As for having children, wait and see what happens. Your wife could end up with a great remission, or the ITP could resolve. I wouldn't worry about that just yet. If she continues to have platelet problems, it is still possible to have a successful pregnancy.

Thank yoy very much for your responses server and sandi.
I am in the hospital right now, we had the count done and sadly its not any better infact dropped a little to 36K.
Hemo decided to continue with 10 mg prednosone for another week and said next week he will start tapering.
He also said to me that it looks like she is not responding to rituxan and we might want to consider spleen removal.

Next week is the last infusion(8th). Lets see how the count will be.

As for the questions:

why rituxan so early: We asked hemo to continue on pred. For little longer before moving ro rituxan on which he said "there is no point in delaying the inevitable."

why 8 dosage: We were told that its standard practice to have 6 - 8 weeks of rituxan.

I am so confused right now. Especially when doctor said,"it looks like rituxan is not working for her and she might need a spleen removed"
untill now he was like, ok lets give ot some more time and all.
Do you think i need to take second openion?

I also asked him about the H pylori virus, he said, tough its highly unlikely we will test it next week.

Sandi, can you post the likns you were referring to?

Thank you guys again for your support.

Which country are you in? Treatment protocol is often different in different countries.

The most up to date International guidelines are at bloodjournal.hematologylibrary.org/cgi/content/full/115/2/168 and will give you an idea of what treatments are available.

Hi Ann,

I am in Atlanta, Georgia, USA.

Rituxan:

www.haematologica.org/cgi/content/full/93/6/930

www.pdsa.org/treatments/conventional/b-cell-depletion.html

www.ncbi.nlm.nih.gov/pmc/articles/PMC2649358/

bloodjournal.hematologylibrary.org/cgi/content/full/110/8/2784

Platelet production:

www.itpscience.com/regulation_platelet_production/regulation_platelet.html

www.scripps.edu/mem/itp/cause.html

bloodjournal.hematologylibrary.org/cgi/content/abstract/103/4/1364?maxtoshow=&hits=10&RESULTFORMAT=&fulltext=ITP+platelet+production&searchid=1&FIRSTINDEX=0&sortspec=relevance&resourcetype=HWCIT

www.hematology.org/Training/Trainees/2768.aspx

Yes, I would consider a second opinion. Some of that info isn't quite right.

Sushpop, as you're in the US I'd suggest getting another opinion from someone who is experienced in treating ITP. The treatment your wife has had so far is not what would be thought of as usual. To start reducing the prednisone with a count of only 72 instead of waiting another week or so until it reaches a normal count and then tapering slowly is somewhat unusual. And to do more than 4 weekly rituxan treatments is very unusual. Good luck with whatever you decide to do.

Thanks a lot guys for all the support and all the valuable information that you shared.

We went today for the last(8^th) Rituxin infusion. The count was again in the
same range 37K. Hema suggested to increase prednisone and then taper it very slowly.
This is one option. I opted for it. He also draw the blood for "H Pylori" test I am not sure when the results will come out.

Does any of the members out here have any idea/experience about the Best Hema in Town(Atlanta-GA)?

Now the rituxan infusions is over, its pretty much dependent on prednisone

I would be checking at Emory University hematology department.

Thanks Melinda, I will check that as well.

Update from Today, The count is 57K with 15 mg pred.

Today my Hema. basically went over all the tests that were performed and said, the only thing we haven't done is CT Scan.

1) he scheduled CT SCAN next week.
2) Ask us to see a Rhumatologist.

He thinks its worth checking for Lymphos(if I spellt it right ) as during one of the rituxan treatment she tested positive for ANA, but at that time doc. said it can be false +ve and ignored.


Meanwhile, We spoke to a Homeopathy doctor, he seemed pretty confident and has handelled(sucessfully) many patients with ITP.

BTW, Was anyone ever got treated with Homeopathy? or thought about that?

Hi Sushpop,

We had gone to a Homeopathy Doctor. Dr Praful Vijaykar from Mumbai India.

Gave her 1 year of medicine. She is in remission for the last two years now. She is my wife.

Good doctor. Take an appotinment at least 4 months in advance.

Thanks,

Gautam