New to the community!!!

Hello everyone! I’m a 27 year old female and I was diagnosed with ITP last December after being hospitalized with low platelets (8K) Since then, my hematologist has tried steroids, IVIG, Promacta, and I just completed my 4th round of Rituxan this week! It has been difficult to find a treatment that keeps me stable because it seems my levels crash when I taper off of either the steroids or the Promacta. So I’m really hoping the Rituxan will put me in remission for a while. I have been in the hospital once a month since my diagnosis because of my crashing levels and I’m sure everyone here knows how draining it is to have your levels go up and down so drastically. Anyways, I needed to find a place where people could relate to what I was going through because most people have never even heard of ITP! I’d like to hear people’s stories if you want to share! What treatments you’ve tried, the things that worked for you, things that didn’t, etc. Hope to hear from y’all, and hopefully make new friends

Welcome to PDSA. Can you share your WBC, HB and RBC level?

My last labs were a week and a half ago, but my WBC then was at 10.8, HB meaning Hemoglobin? Sorry, I’m very new to all this terminology...but if so, it was at 13.5. RBC was at 5.26 . I had IVIG & platelets a couple of weeks ago and that with 75mg of Promacta has kept me steady, my last count was at 135K! I usually respond to these things but as soon as my doctor tries to decrease my Promacta dose, my levels crash. I’m starting twice a week labs this week, so hopefully they’ve kept steady!

Carcamoc10 wrote: ... I’d like to hear people’s stories if you want to share! ...

After Rituxan failed for me, I read PDSA forum stories for 3 or 4 months trying to figure out what did, and what did not, work for others. Took notes along the way. The result is my ITP treatments table.
bottools.com/Hal/ItpTypes.html

Hi Hal! Thanks for that, husband and I are looking into it and using it as a jumping off point for more research! Admittedly, I’ve only begun looking up things because I was very naive at the start of all this and felt it was best to leave that up to the specialists. I’ve seen I’m stumping them a little because they have told me my body doesn’t react to treatments like 90% of other patients with ITP. Thanks for the info though!

Carcamoc10 wrote: My last labs were a week and a half ago, but my WBC then was at 10.8, HB meaning Hemoglobin? Sorry, I’m very new to all this terminology...but if so, it was at 13.5. RBC was at 5.26 . I had IVIG & platelets a couple of weeks ago and that with 75mg of Promacta has kept me steady, my last count was at 135K! I usually respond to these things but as soon as my doctor tries to decrease my Promacta dose, my levels crash. I’m starting twice a week labs this week, so hopefully they’ve kept steady!

I'm happy you found something that works for you.

Promacta is the sort of drug that you don't come off. You simply keep taking it for as long as necessary. Some people have been using it for years.

Yeah, I’ve actually wondered about that myself & the hematologist just said he was cutting my dosage per the FDA guidelines due to my levels reaching 300K and has even tried cutting the dosage with his own calculation so I don’t crash, but anytime he has lowered my dosage, I do! Rituxan was started to see if I do better on it, but honestly I’m not sure what the plan is with Promacta in this scenario because I was actually supposed to stop the Promacta altogether once I began the Rituxan. I have an appointment with him on Thursday and this will be what we talk about!

Just thinking out loud. I have to wonder if Rituxan combined with Promacta could be effective for a row 1&2 response.
Good luck.

I’ll post any updates for sure!!

Quick update: Went up to 200K last week and was back to 98K on Monday this week! Hematologist says he’s going to keep me on the Promacta 75mg until my levels stay steady, which he’ll take to mean that the Rituxan is working. At that point, he’ll try starting a taper on the Promacta and if all goes well, I’ll be able to get off of it completely and just enjoy a stable(even if low) platelet level! We are especially cautious just because my numbers have been all over the place and I seem to bottom out when tapering or cutting dosages! I’m hoping for the best, but preparing for the worst as well...Hope everyone’s been ok!

How does he taper Promacta. You are currently on 75mg/day. Will he cut you straight to 50mg dose or a combination of the two doses?

He’s willing to play around with the dosages...for example, he thinks it’s worth trying the 50mg pill and half of a 25mg pill to begin taking me off of it. So 62.5mg instead of cutting me down to the 50mg dose!

That is good my haemo is the same, she lets me jiggle about with dosing.
Speaking from experience may I suggest when you start taper again you take 75mg one day and 50mg the next day for a while and have a retest before dropping to 62.5 mg daily. Endpoint of any ITP treatment is a count above 50. Once I retire (only 7 months to go) I will be happy to run at a lower count than that to be honest.

That’s a good idea, I’ll bring it up at my next appointment! And yeah, I would be really happy with a stable level over 50!! The only reason I wouldn’t want less than that is because my menstruation is a ten day nightmare otherwise But luckily, even when I’m low I don’t get bruises or bleeds...only some scattered petechiae on arms, hands, & legs!

Quick update, I’m down again to 64 but am trying not to freak out about the Rituxan possibly not working because I just completed it last week! Hopefully I don’t dip under 10, though, I’m really trying to avoid another hospitalization this month

Carcamoc10 wrote: Quick update, I’m down again to 64 but am trying not to freak out about the Rituxan possibly not working because I just completed it last week! Hopefully I don’t dip under 10, though, I’m really trying to avoid another hospitalization this month

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