Help!

Don just called me from the docs office. They will not give him any more Nplate, they don't even know why it's not working right now, when it worked three weeks ago, but they want him to IMMEDIATELY take Rituxan with 100 mg of Prednisone tomorrow. Don's ready to walk away today without anything because he feels they're pushing him. What would you do?

He's not comfortable doing the Rituxan? I'm not sure about the urgency they are showing. He hasn't had Rituxan yet right? I dunno, I think I'd do it. Is there a reason you are reluctant about it? Either way Nancy, I believe it's gonna be alright!

Anytime a doctor is pushing anything, it's time to take a step back. That's how people end up in bad situations. Even *if* he had zero platelets, although there is a bleed risk, if he's not bleeding already then you have some time to at least think things through and make an informed decision. It will give you time to read up on rituxin, it's risks, benefits, and decide if you guys really want to go there. I read of a person not long ago that lived with zero platelets for 18mos. and went to work every day. His finally came up. My point is simply that Don will not necessarily die if he has low platelets. Anytime a doctor starts pushing ANY treatment without giving people time (unless it's clearly an emergency), red flags go up all over for me.

My .02

Don has Transverse Myeletis, a immune disorder that destroys the mylen sheath around the spinal cord. According to things I read, Rituxan can cause PML which is also a disease of the myelin around the brain. It is fatal.

donswife48 wrote:

Don has Transverse Myeletis, a immune disorder that destroys the mylen sheath around the spinal cord. According to things I read, Rituxan can cause PML which is also a disease of the myelin around the brain. It is fatal.

THAT alone would cause me to avoid that drug like the plague. There are too many other options without adding that dangerous chance to the mix. And I don't care if they say it's 1/2 of 1% that might get it. Would HE want to be that 1/2 of 1% (I have no idea what the percentage risk is - I'm just throwing a small number out on purpose).

hang in there.

patti

Don just called back. The hemo clinic is backing off for today on Rituxin and will give him a large dose of Nplate. We will go back on Wednesday to discuss everything with his actual doctor (he's only seeing a PA today). I think it's time to be referred somewhere else. Joan Young has said teaching hospitals usually have someone who is knowledgeable in specialties, we have the Nebraska Medical Center nearby. I've looked at their staff, and discovered Dr Sandeep Rajan is there, he's written a publication on ITP and is even listed in the archives as having his article written in the PDSA newsletter in 2002. The nurse last week even mentioned Mayo Clinic. Has anyone been seen by them?

Nancy, I don't think Rituxan "causes" PML. It in some case it may reactivate PML in people who already have it in their system. And yes, it can be fatal.

Rituxan may actually improve the transverse myeletis. It has been used with some success to treat multiple sclerosis, which it seems might be similar to the transverse myeletis. (I have both MS and ITP, so I've read up on that).

Anyway, you're doing the right thing not to rush into it, but after considering the fact that it treats many autoimmune conditions, you may decide it's worth a try. I had 2 low doses in early 2008, and haven't had any MS problems since. I don't think I'd ever have the "full dose" unless I had cancer--it seems like overkill.

The thing that makes no sense to me is that Rituxan isn't known to be fast-acting. It can take a few weeks to work. If they are in a hurry to get his counts up, Rituxan won't be the ticket for that.

I'm glad you got it sorted out.

Dons is correct in not letting him push him into any treatment he is not ready for. Like I said before, I signed up for the trial at USC for the drug similar to Rituxan--same side effects as Rituxn, but given in two does (not IVIG). I also read that it can cause PML. Since my platelets went up after signing up, I've done more reading and have decided against this drug. You need to keep reading and go by you "gut" feeling. Even if my platelets go back down to "1000", I'm not letting them push me into any treatment I am not 100% for. My platelets went up to 285000 since all this happened. Who knows what would have happened if I would have done the "trial". Even if they go back down tomorrow--there's always the chance that they can still go back up again. I'm willing to live with low platelets for a while if I have to. I don't really feel that bad when they are low.

I agree with Joan about the teaching hospital. Personally, I wouldn't make a special trip to Mayo clinic (and I live only 90 miles away). My second opinion was at the University of MN, and I have stayed with that clinic and been very happy. Mayo Clinic is good, there's no doubt, but I don't think they have any published ITP experts.

Thanks for the fast support. Don said he was blind sided when he went to the doctors yesterday. Apparently two of the doctors had discussed his lack of progress earlier and had decided if he was low again, they would stop Nplate and change to Rituxan. Unfortunately, they left Don out of the discussion, so he called me in kind of a panic, said they were not going to give him any more Nplate, they were changing the treatment to Rituxin w/100MG Prednisone and were trying to set up the first treatment today at the hospital. He asked me what I knew about Rituxin because he hadn't heard of it before then. I quickly read off the PDSA site what it says, he told me on the phone he was ready to leave without any treatment plans because he wanted time to think. That's when the PA called the on call doctor and they agreed to give him a larger dose of Nplate. (He was at 5mg last week so it's not like he's at the full dose yet). I had also written a couple of questions regarding medicine changes made at the same time his counts started dropping. At the time his count was 99, he saw his heart specialist who prescribed Lasix & a couple of other meds. His counts started dropping after that, so I wrote that I suspected Lasix might be contributing to his drop, could we try a trial of stopping Lasix to see if his counts improved. The PA called the heart spec office and he agreed (because the Lasix is only to reduce swelling, not for blood pressure). So he now has also stopped Lasix and is to go back for a blood count on Monday, he also sees his regular hemo doc on Wednesday, when they'll discuss Rituxin. Thanks Tamar for the insight in Rituxin & MS. I did lots of research last night and saw where it is used for Divic's also. So armed with knowledge now, Don can make the decision on Wednesday. And lost in this whole thing is the fact that I don't know if our private insurance will even cover Rutixin??? Thanks for the support.