Post Spleen Journey

Congrats! Hopefully more platelet to come.

Hal, I started a list then my computer froze and I lost it. It would be easier to start a new thread and ask. I'll do that.

Sandi, I was just asking about 'aclow'. I see that you created a new thread about clots. Hopefully that will get the ball rolling with something meaningful.

I hope so too. It might take a while though.

Platelets were up to 61 on Tuesday with no clot symptoms. I continue with my Rituxin that was started in the hospital tomorrow (Friday). This is my second round of Rituxin, had it in December 2016. The Hemo has me on 20mg Prednisone and 50mg Promacta daily. He wanted me to take 60mg of Prednisoine but I said no, last time on that dosage I couldn't sleep. He finally agreed to the 20mg.

Good count. I wouldn't be able to sleep properly on 20mg never mind 60mg. The most I've ever taken was 45mg and that turned me into a hypermanic insomniac.

Did Rituxan work for you the last time? Your count is great!

I was trending up slowly, 2-3K a week while tapering Prednisone. In February I thought I had a sinus infection and my family doc gave me an antibiotic that killed my count. Turns out it was the flu and I ended up in the hospital. After that it seems I have been on a roller coaster. I'm hoping that this time I can avoid illness after Rituximab and get some good results.
I am happy with the count right now but, I had 3 IVIG's and twice daily IV steroids ((4 days) last week. I expect the count to be even higher tomorrow.

D.Mann wrote: Platelets were up to 61 on Tuesday with no clot symptoms. I continue with my Rituxin that was started in the hospital tomorrow (Friday). This is my second round of Rituxin, had it in December 2016. The Hemo has me on 20mg Prednisone and 50mg Promacta daily. He wanted me to take 60mg of Prednisoine but I said no, last time on that dosage I couldn't sleep. He finally agreed to the 20mg.

Yahoo! That's a great count. I'm happy to see that you are out of the low numbers. It sounds like they are doing the kitchen sink approach to throw a bunch of stuff at you to get your counts up and the bleeding to stop. The only thing I would be worried about is being on Promacta at the same time that you are taking Prednisone and IVIg and more Rituxan (just about every ITP treatment all at once, whew!). Because you have already had clot issues, Promacta really increases the risk for more thrombosis, so I would want to get off of that if you want to do all of these other treatments. The last thing you need is to have your counts sky rocket and then have Promacta contribute to another clot because you get too high and far away from the target count of 50.

Good for your for standing your ground on no 60mg Prednisone. That would be a recipe for absolute mania for me and no sleep. While you are healing from surgery and the complications, sleep is pretty important!

Well that is great news to hear your Platelets are 61 and no clot symptoms! Hooray!
It seems like we have to advocate for ourselves a lot! And it is not always easy. Good job.
I wonder how many rounds of Rituxin you need? Do you need to continue it even if your platelets are stable?
Thanks for sharing.
Cindy

One round of Rituxan is four treatments. It should never be more. If Rituxan doesn't work the first time, it won't work a second time. Rituxan isn't usually 'needed' - it's a choice like any other treatment.

Well second Rituxin is done. In the chair from 9am till 3:15pm a long day for sure. My count was up as I expected with everything they pumped into me last week in the hospital.
Platelets were 245 and my hemoglobin finally has started to rise, up to 9.7 today. CBC Tuesday and Rituxin again Friday.
50mg Promacta
20mg Prednisone

You feel good and can sleep. With Prednisone I always had trouble sleeping. It’s not easy to be in limbo.
I hope this treatment combination will help you get your platelet stabilized towards your goal.

Good Morning,
Do they ever just give less than 4 treatments. My guess is no. I am just trying to be prepared with knowledge. Do you see Rituxin given prior to both TPOs Promacta and nplate being tried and exhausted? Do you ever see Rituxin given with a TPO?
Thanks,
Cindy

Yay that all sounds so incredibly positive!

OOPS I see D.Mann is getting Rituxin given with TPO.

I have not has Nplate, yet. Promacta seemed to work great at first but I only responded a few months before it started dropping off. Hemo is trying to regulate everything right now. He has apologised to me last few times I've seen him because of my rollercoaster ride. He doesn't want another crash (neither do I by the way). We will go slowly and try to get a stable count for a few months in a row.

Stabilization is the name of the game! My dr wants me to consider Rituxin if things don't stabilize soon; I just moved up to 75mg dose of Promacta last week. I also started taking some homeopathic stuff a naturopath dr gave me for immune balance, antiviral and anti fungal. He said it could help within 2 weeks. I can only hope.
Meanwhile the hematologist is having me do a Bone marrow biopsy cause the WBS are low1.8 to 4 recently. It is a roller coaster ride. I forget if you have a bone marrow biopsy?
This is a part time job, right? Sigh!
I am hoping things stabilize for you and the clot stays gone!!!!!!
Cindy

No biopsy for me at this point. Lots of blood work, they finally verified that I do have antibodies for Platelets. Who knew? My WBC are high now, due to steroids. All my other blood numbers are low (climbing slow) due to the blood loss that put me in the hospital last week. I get tired really fast right now. If numbers are low this week I'm asking for some iron to help get going again. My hemo said at this point anything above 30 and stable is gravy.

Third Rituxin is almost done. My count has declined some to 179 today. I expected this since my 3 IVIG treatments were about 2 weeks ago. That's a drop of 70K in a week. That's good for me. Still on 50mg Promacta and 20mg Prednisone for now. No more issues with the blood clot so far.

Sounds good! You don't want those counts too high!

Dmann I am happy for you with your result. Keep up with positive spirit

Well I finished up Rituxin treatment yesterday. I'm feeling better than I did before surgery now. My only complaint is still getting tired way too fast. All my blood levels were still low due to blood loss during my 2 post surgery platelet crashes. My hemo said my getting tired was probably due to this so I got a bag of iron along with my last Rituxin.
Platelets were down again, to 82. Still not bad since I had 3 IVIG over 3 weeks ago. Generally I get 2 weeks tops.
Current meds are 50mg Promacta and 20mg Prednisone daily.
Also no symptoms of from my blood clot.

Thank you for continuing to check in here.

Is the Promacta going to be enough to keep counts up if the Rituxan doesn't?
Do the doctors think the clot is gone?

Doc says clot is there but reduced in size due to my very low count for so long last month. He said if no pain then no treatment (blood thinners), and CT scan in a few months to verify. I was at 10K or less for almost 2 weeks with active bleeding. Although I had to be hospitalized it seems to have helped the clot.
For now sticking with Promacta, although I may have to try 75mg. I really want to make sure not to knee jerk switch up treatment. I think that one of my issues in the past is not letting things equalize before changing treatment. NPlate has been brought up, but increasing Promacta will come first.
Another kicker is the doc says it can take a couple of months for the body to adjust to the spleen removal. I'm just getting to that point but the whole blood clot and 2 crashes since surgery have put a link in the works.

Dwindling platelets again yesterday, now at 61. My other blood numbers are climbing now since the Iron was given with my last Rituxin last Friday. At this point I am not changing anything, my doc and I want to see where it settles out. So I am staying with 50mg Promacta and 20mg Prednisone for now. I am going to do weekly counts to monitor closely. My doc said that this time we would try to avoid another crash by adjusting medications a little sooner. First option is to up the Promacta to 75mg, after that I guess it will be NPlate.

Stay positive. “The best is yet to come”.

It is crazy how the drs take forever to start being proactive. I feel like I wasted months from 5/31 till 8/6 before getting onto a focused Promacta plan and now after 3 weeks at 75mg the dr is ready to say it isn't working?!? Sigh. ITP is just tough to figure out I guess. I am glad we all have each other here.
You may already have found the PDSA newsletter section but if not it is worth a look. I was reading it for the first time last night because I wanted to investigate promacta and there is sooooo much info. I started reading about Promacta and low dose Rituxin and other stuff. I bet is is info our drs don't know about. I copied and pasted the articles and titled them individually and emailed to myself so I could share them with drs as needed. You may not need that info but thought I'd share just in case.

I am sending you good thoughts. I am sorry you have gone through so much already. I hope you have stable results soon!

Wow, wow, wow!
I've spent the last year on the ITP roller coaster. Platelet crash then IVIG and platelet spike, then do it all again. After everything today I got my first normal range count without IVIG. I am on the high side with a count of 410, was only 61 last Tuesday. I really expected another drop today. I'm trying not to get too excited but normal numbers are a great surprise. I was due to see the doc but I had the nurse show him my numbers before I left. He told me to cut my Promacta down to 25mg and keep the 10mg prednisone. I'll see him next Tuesday and we'll see what happens. My hope is that the combination of Spleenectomy and Rituxin has finally kicked in.
Surgery was August 1 and last Rituxin was October 13.