ITP Treatment and Cardiomyopathy

Hello! I'm Meghan and new to this site. Let me give you a little background on me, because really, well all love to share our stories with those who actually care

I was first diagnosed with ITP 13 years ago. I had 36 bruises on my legs (I was 22 and we played connect the dots with them one night) and was incredibly weak and fainting for no reason. I finally went to the doctor and received a call several hours later to head to the ER. There I was told that my platelets were at 6500 and I most likely had HIV, Hep C, lupus or leukemia (commence FREAK OUT). One horrifying bone marrow aspiration later, I was diagnosed with ITP (um, what?). I had never heard of this and neither had any of my family or friends. I was in the hospital for 3 days and received 3 treatments of IVF. They told me I would most likely never have ITP again but put me on pred for 4 weeks just in case. Sure enough, counts went back to normal and stayed that way...until six weeks ago...

For the past six months I have had a feeling that my platelets were low. I have been ridiculously tired (I can barely open my eyes in the morning) and bruising like crazy. Then I had the most excruciating period of my life. Bled through super tampons in 30 minutes (I can normally go 4-6 hours with a regular tampon). A week later, I got bronchitis, which I didn't see the doctor for because it goes away on its own. A few days later I was at a friend's BBQ. Had a couple drinks and was home by 10, as I was exhausted. As we're getting ready for bed, my boyfriend looks at my back and informs me that I have a waffle print bruise on my back from sitting in a metal patio chair for 15 minutes. At this point I was about 90% positive it was ITP again. I went to the ER and sure enough, my platelets were down to 19k.

I met with a hematologist the next day and we started on pred. Overnight from taking the pred at the hospital my number went up to 32k, within a week, 145k. We stopped the pred and a week later, back down to 25k. Three more weeks of 30mg/day of pred, up to 155k, so we taper to 20mg. Two nights later I had the evil blood boiling feeling. Count down to 109k, four days later, down to 43k, 5 days later, down to 21k. Let me be clear, I HATE steroids. My blood pressure is up and I'm retaining water like crazy. I respond wonderfully to the steroids, but they were never our choice for longterm care. So now I am set to start my first of rounds of Rituxan next Tuesday.

I am aware of the side effects and hopeful I won't have an issue. What does concern me is that I have cardiomyopathy. When I had my daughter five years ago, I went into heart failure. Turns out it is autoimmune related. After two years of treatments my heart function is back to normal. I am no longer on medication (I don't have insurance right now and my doc won't write me a prescription without an office visit). I have been off the blood pressure medication for a year and have maintained a perfect 110/70, until the steroids started. Now I am usually still fairly normal, but sometimes I peak to 143/80 (when I was in heart failure my BP was 145/100). Turns out steroids can actually cause heart failure. My blood levels are all perfect (except for the platelets) and my heart is beating beautifully and my lungs are clear.

In the last week or so, I've been having some chest heaviness. I attribute this to anxiety over the ITP, but the water retention and elevated BP make me a little nervous. I guess what I am looking for is someone else who has a heart condition who has been through Rituxan. Obviously my hema wouldn't allow it if she was concerned, but I did as her to contact my heart doc this week just in case.

Huh, sorry for the crazy ramble, but I think my boyfriend my kill me if he has to listen to my ITP rants anymore!!

Sorry for any typos, too tired to bother with spell check

I'm not a big poster here, but want to tell you rant all you want. I don't have cardiomyopathy but it seems you've taken all the right steps to protect yourself. During the Rituxan in fusion they will be watching you closely. Any signs of trouble they will stop the infusion and get you any help you may need. Expect the first infusion to take awhile. They quoted me 6 hours, it took twelve hours over two days. Hope you the best. Rodger

12 hours over two days!! they told me 4-5 hours. I saw my cardiologist today and unfortunately, my ejection fraction has reduced by 10% and is below normal because of the steroids. I'm back on my meds and she is hopeful it will return to normal as soon as I get off the steroids and my heart has some time to heal. She said to go forward with the Rituxan. My ejection fraction is good enough to withstand the fluid intake so I should be ok.

Just felt a little broken after I got that news today. My heart has been fine for over three years and I didn't think it was an issue anymore. I'm just glad I trusted my instincts and went to see my doc.

Thanks again for the response

I don't have cardiomyopathy, but I have had to deal with heart issues along with ITP, including a triple bypass. The only advice I can offer is to convince your cardiologist to talk, fairly often, with your hemonc. Having you be the go between, going back and forth saying "well the other doc said X" and "the other doc said Y" just increases the risk. Things have been much better since my cardiologist, my hemonc and my neurologist started talking. They can agree in advance what each will do on meds and other treatments depending on what my counts are. It's also helpful to have really frequent counts done, especially if you are on something like Plavix, so that if your counts bounce up or down a lot one day you don't have to try to track all of them down and then spend 2 or 3 days for them to catch up.

Rituxan is major league stuff, but I think most of us who post here did ok with it, in terms of side effects, although obviously there are exceptions. My infusions were always pretty non-eventful, even a bit boring, and I hope your infusions are the same.

Thanks, Gort! I'm hoping for uneventful infusions as well.

That is great advice to have my doctors talk. I can never remember everything I'm supposed to communicate.

One question about Rituxan, should I eat before hand? Does it matter? My first infusion is Tuesday morning and i really haven't been told what to expect except that it's no big deal...

I don't recall being told not to eat beforehand. I definitely recall eating during the infusions.

Yes, you can eat before, during and after. Food isn't an issue.

Having the infusions over two days is rare. Most people get it done within 6 hours the first time.

Don't bring smelly food, there are people around you getting serious chemo and might be sensistive to odors.
Erica

Great point Erica! I think I'll use this as a good excuse to eat some yummy McDonald's for breakfast. The hospital has graham crackers so I can munch on them if I need to. I used to be able to go 4 hours without eating but not since the Prednisone

mstrux wrote: yummy McDonald's

Those aren't two words I usually think of using together.... :laugh:

Except for the iced coffees....I'm hooked.

Ok, that was easy. The IV took 4 hours but I was there for 5.5 total. The worst part about it was the volunteers waking me up every time I started to fall asleep! The chaplain then the volunteer from the American Cancer Society. I know they mean well, but sheesh, 4 hours with an IV, let me rest!

Good news is that next time the IV will only take 2.5 hours since I didn't have any issues. I am so relieved and I feel better than I have in months (mostly because the steroids have my platelets up to 170k) but also because the worst part is over. Well, assuming the Rituxan works, which it had better!!

Thanks again for everything! I'll keep you guys posted on my progress.

I'm glad it went well. Most people do fine.

ooh, i never thought about the smelly food. I took my own lunch. cold veg that done night before. One nurse didn't like the yellow peppers so didn't do that again. For two weeks she wasn't on duty so the last week I thought I be safe to do them and guess what - she was back on duty. So I ate that part of my lunch quickly. She didnt comment that week so hopefully she didn't know the yellow peppers were there. Another week I had a ginsters scotch egg - yummy. Then some doc who been in to see someone else told me I was making him feel hungry :-}

But your posts about that heart got me thinking a little. For I was born with a hole-in-the-heart and had surgery but a tiny hole left. I read on here that rituximab affected heart disease. Mine is not heart disease but a birth defect per se. (VSD) for anyone who knows anything about heart operations. Though the heart docs always questioned a possible weak valve but prefer to leave it that to operate unnecessarily because so ar in my 43 years it given me no obvious trouble.

But none of that is heart disease so I told myself it be okay and if not I deal with it when it happens, knowing I have had the rituximab. I have an echo scan due in October by pure chance as a part of my on going observation of the heart. Had heart surgery in 1979 when I was 8/9 years old.

I'd relaxed with the whole idea until you had posted. But too late now and if anything happens it happens. Jump in with both feet and deal with it later has been my motto for doing courses etc so will be the same for this. If the tiny hole that has been left has grown any then I can inform the department of the rituximab and they can decide what to do then. If there hasn't been any change then it may be that it is safe to have rituximab next time platelets drop. I could ask at the scan anyways though they tend to be technicians but it is amazing what they know when you assume they are not really allowed to answer...

good luck with you. It was plain sailing for me. Boredum being the worst bit. Blood pressure kept dropping and mine is low anyways. But never enough to do anything about apart from once when had to do a deep breath.

Sandi Im back in the rituxan infusion chair again. Got here at 830am and its 340pm now and we're only about half done. They were smart enough this time to split my rituxan into two bags. They only stopped the infusion once and pushed more benedryl because my throut was getting scratchy and I was running a slighty higher temp. I guess it just me being different.

Good luck Rodger! I hope all goes well!