New with questions

Hello,

A little bit of history, My wife was diagnosed with ITP in October 2012. She also has Type 1 diabetes, and some mild complications due to the diabetes. Her platelet counts were at 1 when diagnosed in the ER after showing signs if bleeding (gums, petechea, and blood blisters in mouth). In the ER she was provided IV prednisone, platelet transfusion, and eventually IVIG when she was admitted. Since her hospital visit she's been on 60mg Prednisone. Her numbers have been up and down over the past five weeks, they were as low as 1 and as high as 114. She started to see a dip in her numbers again trending away from her high of 114 and the doctor wanted to start Rituximab.

She started the Rituxan about 3 weeks ago and instanly starting seein results, just before her first infusion her platelets were at 33, her next blood draw had them at 113 and started infusion#2, her third blood draw had her at 200 with infusion #3. Upon her first dose of Rituximab, she did experience some mild side effects such as chest tightness, coughing, itchyness in throat in ears. At that point they stopped the infusion, provided steroids, and more benedryl and she was able to finish the infusion. The other two infusions occured without incident.

Her doctor has started to taper her prednisone by 5mg per week. Since her first 5mg reduction she started to experience some chest pains, she describes it as muscular. She eventually went to the ER and they did a full blood work up as well as a CT scan and Chest X-Ray to help rule out a pulmonary Embolism all came back negative. She continues to get similar pain however it is short lived.

Finally, my questions are, from what I'm reading my wife's response to Rituximab is not typical. Is it common to skip the 4th infusion if her platelets are normal? Second, could her chest pain be a side effect of the Ritiximab? The Prednisone? Both?

Just curious if others have experienced similar effects.

Thanks in advance for the responses.

Hi Jay! I wouldn't say it's common to skip the fourth infusion if counts are up, but it is certainly okay to do that. Studies have shown that four infusions are not necessary, but many doctors do not know that and just stick with the protocol which was actually designed for illnesses other than ITP. Your wife did have an unusually fast response....could have been Prednisone that helped it along too.

As for the chest pain, I wouldn't say that is a typical Prednisone side effect, but I have heard of some people having that problem. Prednisone can do some pretty wacky things to the body and nearly everyone agrees that the drug is wicked. Tapering can be very hard and most people experience a lot of fatigue and joint/muscle pain.

Sandi,

Thank you for the information, I really do feel for you all. Speaking as a bystander and one who has seen my wife go through quite a lot both with Diabetes and ITP its heartbreaking to see and read many of the struggles. I wish everyone the best and a speedy recovery and Gob bless all.

Jay

Hi Jay, welcome!

I too had an immediate response to the Rituxan! But I had all four infusions. I had no issues with any of them. And I was lucky enough to get off the Pred a few years ago! Good luck to your wife and I hope her counts continue to rise!

CyndyL,

Thanks for the info. I know everyone is different however, with the response you had was it longish lasting? Have you needed retreatment?

Hello Jay,
I, too, had a quick response to Rituxan. My platelets stayed in the normal range for 4 and a half years. Last summer, my platelets again went down to 7 and I again had 4 infusions with a quick response. I am currently still in that remission. I had no issues from Rituxan except for "flue like symptoms" for 24 hours. I was told that was due to a lot of B cells being killed off. (Which is what Rituxan does. The body replaces them in 7 to 12 months.)

I hope things go well for you and your wife!

Jay, nope no more treatments since the Rituxan. I've had a couple of drastic drops, but by the next blood test, they were back up. My last test was in Oct. and were 148. My next test is on the 15th of this month.

Hi, My name is Loretta and I was diagnosed with ITP in September 2012 - after ending up in the hospital with over 100 bruises all over my body and petechiae, bleeding gums, severe fatigue and dizziness. My platelet count (PC) was at 12. I was admitted and put on high (IV) dose steroids, 1,000 mg per day for 3 days. Then discharged with 70 mg prednisone per day, and a referral to a Hematologist/Oncologist. I had all kinds of tests. While in hospital and after. ITP was confirmed, and also a golf size tumor in my liver.... still waiting further tests on that. I've had the IVIG infusion, which brought up my PC for a few days, then we went for the rituximab or rituxan. I just finished the last rituxan treatment last wednesday. I had four IV treatments, one a week. My PC count shot up to 203 after the first session. Boy, was I excited! I thought.... "wow, this chemo is good stuff" the second week the PC count was still good, at 150 something; the third 143 and just today my PC was 133. Now, for a person with ITP that's nothing to complain about I know.... but after having it up to 203, then having it drop already to 133 - it just a little disappointing. I know, its a heck of a lot better than 12!

I'm just wondering if I shouldn't be doing more? Like going to a Large Hospital where they specialize in this stuff. Or someone wrote about a test done in London to see of your Liver or your Spleen is actually eating your platelets. I've got a mystery growth in my Liver, could it be connected? I live in Northern California, is there a specialist in Northern California?

So many questions.

Bottom line, is that I want to feel better. I feel tired and that I'm not firing on all cylinders. I'd like to be able to plan a vacation, and not have to worry about whether or not I'll "be well" ..... I know I'm preaching to the choir, sorry. Thank you for letting me vent.

Loretta:

You are actually doing all you can right now and it has been successful. I wouldn't worry about the drop; counts can rebound just as easily. As long as you can keep a safe count (over 30k), you can pretty much do anything, including a trip. You don't have to stop living.

The growth in your liver might be connected; sometimes liver problems can cause a low platelet count. Hard to say.

Most people see the most improvement with Rituxan 4 to 12 weeks after the last infusion, so you still have a lot of time to go. The only reason you'd need the Indium scan is if you are contemplating a splenectomy. Since you are responding to other treatments, there isn't much of a reason to have to think about that right now. The Indium will not tell you if a splenectomy will be successful, but it can tell you if it won't be.

Hi Sandi

Thank you so much for your reply. You have provided me with some needed reassurance, for sure. I didn't know that it would take 4 to 12 weeks to see the full effects of the Rituxan, or that my platelets could rebound just as easily.

I'm going to work on my diet, which will help with my overall health. And have a friend who is offering oxygen therapy, via a hyperbaric chamber, free of charge. Of course I'll check with my doctor about that first. Have you heard of any one using oxygen therapy or even ozone and oxygen therapy for ITP?

Thank you (again)

Loretta

Nope, that's a new one around here!