2nd opinion

Yesterday we went to Children's Hospital in St. Louis to see a new Hematologist about Molly's ITP. Her hematologist here who's been treating her for a year was pushing for a removal of her spleen. Since I've learned from the boards that isn't always effective we wanted a 2nd opinion. Boy was there a difference!

They told us at the new doctor's that they don't even treat unless the count is below 10! Is this normal? I understand that there might be some difference in treating children and adults and at 18, molly is right on that edge. I guess I'm a big scaredy cat, but walking around with such a low count seems scary to me. What if an emergency appendectemy was needed? Or a head injury was sustained??

Anyway, since tapering off the Prednisone in December her counts have been dropping, but very slowly. She's down from 350 to 127. The game plan is to watch her with monthly CBC's for the next four months and see if they stabilize or continue to drop or crash. If they get below 50 they want to think about doing Rituximab. The problem being the expense and the possibility of it being denied by insurance. They felt that surgery should be a later option.

My fears are that she is leaving in August to go to school for two years two states away. She is not good about taking care of her own health (are any teenagers really?). And she would not be able to come back here for treatments.

They told us that they have had very good results with Rituximab and that they have had complete remissions from it. And that they are very careful and most patients don't experience many side effects.

So I guess my questions are:

1. How low does your doctor deem safe for normal life?
2. Is Rituximab the miracle drug they made it out to be?

Any answers would be most appreciated! Thank you.

PS- she starts getting symptoms when her platelets get below 90. Bruising and petechiae on her legs. She's also anemic, but that's very well taken care of as long as she takes her iron.

The answer to question 1 is that many of the experts now are treating based on symptoms, not the platelet count. However, a "rule of thumb" in the US seems to be to start thinking about treating if counts are ~30K. In the UK, that number is more like 10K. If Molly has symptoms at higher counts, then doctors will consider a higher treatment threshold.

Question 2...rituxan is a miracle for some, does nothing for others. It's a serious treatment, and you should read up on it. Also, there's been some success with much lower doses than the "standard" (which was based on dosing for cancer). If you decide to give it a try, I'd suggest bringing in the research on the lower dose and having a discussion with the docs about that (if they don't bring it up as an option). Many insurance companies require preapproval of rituxan for off-label use (which it is for ITP), but lots of companies do cover it.

I second what Tamar said. Personally, I didn't treat until 10 or 15, but all I had to do was pop some Prednisone and my numbers would go up quickly. I also didn't have symptoms until 20 or so. Is your daughter very responsive to Prednisone? If so, maybe they would give her a script and if her counts are down, she could start it. She'll have to get set up in her college area with a place to have CBC's. It would be great if she had a standing script somewhere.

I don't consider Rituxan a miracle drug at all. I've had it twice. The first time it lasted 13 months, and the second time it has given me a 5+ year remission. I'm not sure if the ITP remission is worth it since I had a reaction to the drug which was worse than the ITP. I wouldn't rule it out as an option because of what I said; my reaction was rare, but the problem it caused goes on. It certainly isn't anything to take lightly and as Tamar said, it doesn't work for everyone.

When you stop to think about it there isn't one treatment that should be taken lightly.

I had a reaction like Sandi had, serum sickness - only mine wasn't to Rituxan as I have never had it, mine was to amoxicillin. Anything you put in your body has the potential to cause a reaction.

I hope Molly's count will stay up there mom - hopefully she will level out at a decent count!

Hi Molly's Mom--

Our Caitlin was diagnosed at 2K, needed 2 units of blood, was bleeding out from her menstrual period and needed surgery to stop it. So her docs treated any time she dropped below 30K or so. Dex was the only thing that worked for her prior to Rituxan, and she had been on it nearly a year. The side-effects were getting to be too much! :dry:

At 15, after a year of ITP, she received the standard 4 doses of Rituxan (Sept-Oct 02), and since then, has not needed a single treatment. That's seven years, five months so far.... Her CBC schedule dropped from once a week to once a month to once every 3 months to once in a while---to none. Within six months, her weight and BP returned to normal. And the change in her attitude was remarkable!

We're in FL--she went to college in CO (well, for her first year...)! She rode horses, went white-water rafting and rock climbing and finished school. Her medic alert bracelet now resides in her jewelry box. It is a boon to the whole family that she now lives without fear! And what a great deal Rituxan has been for our insurance company!

Do young adults take care of their health while away at school or etc.? Likely depends on the kid. Caitlin was becoming something of a hypochondriac. Had ITP still been a problem during college, her freckles ALONE would have sent her to the clinic a few times! But it was the non-stop period that really scared her (us); birth control pills helped with that!

WE think Rituxan is a miracle--but read up on it, as it is not without risks of its own. Caitlin had no problems with this med, but others have. I save all info I can find on Rituxan, in case she ever has to decide for herself... Good luck with your decision--and let me know if you have any more questions! Ann, Caitlin's (22) Mom

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