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TOPIC: Rixtuxan versus spleen removal

Rixtuxan versus spleen removal 7 years 1 month ago #28324

  • Nitin
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Welcome Mngobeni, you have come to the right forum. Sandy, Ann, Dean, DeeDee and a lot of great people are here to guide and answer your doubts. Pls do not worry and give a try to Mabthera (Rituxan). Wish you all the luck and lots of platelets.
Nitin

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Rixtuxan versus spleen removal 7 years 1 month ago #28325

  • Dean
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Welcome Mngobeni. You have found a GREAT group of ITP'ers here. We all know what you are going through. You are NOT alone!!!
First I want to tell you to STOP thinking you will not see your kids in their first year of school!!! The chances of dying from ITP are RARE!! Many people do just fine with counts of 35k, others may need treatment. We all respond differently to low counts and treatments. Prednisone does not really sustain counts unless you are on the higher doses, 40-60mg and once you taper, counts will generally drop. I would seriously consider Rituxan before a Splenectomy. A Splenectomy is generally a last resort for ITP, once all other treatments have failed. Reading the stories here will help you mentally, which in turn can help you Physically!!!

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Rixtuxan versus spleen removal 7 years 1 month ago #28334

  • DeeDee Marie
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Hello Mngobeni. As the others have said, you are not alone with this ITP journey. Actually,
with a count of 35, you are doing fairly well. If you don't have a lot of bleeding symptoms, I
wouldn't worry so much. You can live fine with counts that low. Just keep educating yourself so
that you will be aware of the treatment options and can help make your own choices.

As you mentioned, a lot of doctors don't know a lot about ITP; this is why it is important to keep
up with this forum and other sources of information. That will help to calm you and not make you so
anxious about having ITP. Also, I personally wouldn't want to go for the splenectomy, unless it is a last resort and you are young like yourself. Generally, the older folks don't do so well.

Good luck to you!

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Rixtuxan versus spleen removal 7 years 1 month ago #28337

  • ddinap@aol.com
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It can be very scary when you have young kids. I have a 3 and a 7 year old and I kept thinking the same thing about being around to see them grow up. Thankfully steroids work well for me, so if i ever needed to, I would just stay on those. It can be a very scary experience though. I am still working through it. It felt like one day I was happy and normal, and then all of a sudden with one phone call my whole life turned upside down. I think it has actually been just as hard on my kids this year as me. THye notice a lot more than I thought they did and both of them have had a hard time dealing with mommy being in and out of the hospital for the last few months. Thankfully Rituxan worked for me and I have been ok for the last month now.

Hopefully you will find a treatment that works for you and you can get some reassurance!

Good luck!

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Rixtuxan versus spleen removal 7 years 1 month ago #28339

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Ladies - maybe there is something wrong with me but I never thought I'd die from ITP. I had 3 young kids at the time (1998) and it never occurred to me that I wouldn't live to see them grow up. They did, in fact, grow up and I am still here. I had counts below 5 quite a few times. If you have a treatment that raises counts, there is no reason to believe you will die from this. Even if you can't get counts up, many people do okay.

One phone call turned my life upside down too when I was diagnosed. I got the call while I was at work and I'll never forget that moment. It was a long time ago, I've been through a lot with treatments, but have had a 7 or 8 year remission at this point.

Education is your best defense. Read. It can help you calm down.
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Rixtuxan versus spleen removal 7 years 1 month ago #28342

  • DeeDee Marie
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Sandy...Very well said!! And, you have been through a lot and have a lot of experience. Thanks for sharing with everyone.
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Rixtuxan versus spleen removal 7 years 1 month ago #28350

  • MNgobeni
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Thanks guyz, as I was reading your comments tears flowed but this time for joy, I gues I was in the dark. I know death can come anytime to anyone but for some stupid reasons I felt my life was coming to an end You will definatlty laugh if I can give you more details about what was going on in my mind about death, my kids and so forth :laugh: . My hope has been restored education is best.

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Rixtuxan versus spleen removal 7 years 1 month ago #28351

  • Dean
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Glad to hear your hope has been restored!!! Knowledge is good medicine! Feel free to share some of your thoughts if you like.

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Rixtuxan versus spleen removal 7 years 1 month ago #28354

  • Sandi
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MNgobeni - share your thoughts if you want to. That's why we are here! We laugh, we cry, we are family.

ITP is not a death sentence. Far from it! It's just something that you have to manage. You just slide it into life as one more thing to take care of. One day, you will realize that it's not your first thought when you wake up. You will learn to put it on the back burner and keep the better things (kids, family, job) on the front burner.

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Rixtuxan versus spleen removal 7 years 1 month ago #28363

  • DeeDee Marie
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It's so nice not to keep the thoughts that bother us all bottled up. That's why this forum is really good; just to let loose of those thoughts. We've all been at really sick times in our life, but we manage to get through it. And, this is why we are all here.

MNgobeni - just share your thoughts. That alone will relieve your stress! And with the counts that you presently have--you should be just fine!

Good luck to you!
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Rixtuxan versus spleen removal 7 years 2 weeks ago #28760

  • ddinap@aol.com
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Nitan - have you had any luck with your platelets increasing since the Rituxan? I was thinking of you when I was reading some of the other posts. I really hope the Rituxan worked for you. I am 2 months out and my platelets are now 252,000 with no medication, so there is hope!

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Rixtuxan versus spleen removal 7 years 2 weeks ago #28767

  • Nitin
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Thanks ddinap for your concern.
On 25-Oct-12 my count was 25k, better than 6k I had during Rituxan treatment.
As my Rituxan treatment finished on 5-Oct-12, I hope count to get better plt counts
by November 2nd week.
Thanks again. :)
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Re: Rixtuxan versus spleen removal 7 years 2 weeks ago #28772

  • kym
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MY FEELINGS EXACTLY!! THX 4 SHARING I COULDNT GET BY WITHOUT ALL THE INFO AND STORIES

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Rixtuxan versus spleen removal 7 years 2 weeks ago #28778

  • DeeDee Marie
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Nitin, that is a lot better than 6! Sometimes it does take a while to go up. So, this is a
good sign. Here's hoping you do good on your next blood test.

Wishing you the best.
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Rixtuxan versus spleen removal 7 years 2 weeks ago #28780

  • firkins
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Hello All, I am reading this thread with great interest. Hoping Nitin's numbers go up after the Rituxan. And that DD's stay up. And learning a lot from all the wise and experienced voices here. I am also needing advice/input on this very topic: rituxan vs spleenectomy VS NOTHING for my 13 year old.

I've posted elswhere on site. Like DD, my daughter Mia was diagnosed March 2012, also after a mole removed that didn't heal. The first months were such a medicalized nightmare: 3 Ivigs (& 1 allergic reaction), prednisone, Anti-D, twice weekly CBC. Finally we said enough! particularly because Mia, like DD, really had no symptoms after a while even when in single digits. (She DID have symptoms at first but they diminished & the few platelets she has seem to rise to the challenge - no bruising, pettichae, bleeding, etc). Everything felt like a band-aid -- no cure, some scary side effects, so taking a page from Ali P and the Europeans generally (also on this site), we stepped back. Our hematologist in Boston/MGH has been great about letting us NOT treat even when numbers very low since Mia doesn't have symptoms. Mia has been fine with occasional small blisters in mouth for which we give her a day or two of prednisone (small doses) and they clear up. We did homeopathy, too, which did not "cure" ITP but has helped with her mood, anxiety, and perhaps the overt symptoms of the disease.

But now it's coming on a year and wonderful hematologist wants to talk about SPLEENECTOMY or RITUXAN. Ahhhh! We do not want to do first option for sure, esp on a 13 year old. And 2nd option is scary, too.

MY QUESTION: Do some of you just live with very low numbers (say 10 or even lower to 30) for long times? Our hematologist said the worry is a car accident or something, or wanting to travel or just getting rid of it. Seems no guarantee and lots of risks for a 13 year old girl.

THOUGHTS? very grateful to all of you! Good luck to those taking Rituxan.
Firkins
Firkins (mom of Zoe (15) and Mia (13). Mia has ITP. Diagnosed 3/2012.

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Rixtuxan versus spleen removal 7 years 2 weeks ago #28789

  • kym
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HI FIRKINS i have only been diagnosed a month counts stay n the single digits pred not working and been on a 100 mg for bout 2 weeks taper myself dwn 10 mg a week just completed a 5 day treatment of IVIG which had my counts to 105 the highest ever even though its temp i am out of the danger zone and that feels good i had a bad 4 hr nose bleed and was hospitalized for 2 days other than that try n to stay positive i go thru and read to get informed since this is new and scary..pray n 4 us all high counts hope things get better for ur daughter

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Rixtuxan versus spleen removal 7 years 2 weeks ago #28790

  • DeeDee Marie
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Hi Firkins,
There are many who have ITP and there platelets stay at 10,000 or below. For most of these people with ITP, they have tried most of the treatments and nothing seems to work. Eventually, if you do too many different meds, during a short period of time, I think it starts to confuse the body--and then nothing will work.

The main thing is the symptoms. If your daughter doesn't have a lot of symptoms, the doctors probably want to take things slow with her. I did meet a couple of people at the ITP conference who have platelets at or below 10,000 and have been that way for years. They seem to be doing just fine. Every case is different, so it is something that you need to research and go over with your daughter's doctor.

Good luck to you.
Dee Dee

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Rixtuxan versus spleen removal 7 years 2 weeks ago #28793

  • Nitin
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Hi Firkins
Thanks for your wishes.
I have been having low counts for the past 6 months (2k-25k). Fortunately I am not having
any symptoms, except for occasional mouth blisters or petechia.
Go for Rituxan treatment for your daughter, keep splenectomy as the last treatment option.
For homeopathy, I would say that you try and stick with the treatment.
Its a slow process and takes time to cure. I too am taking homeopathy treatment.
Wishing lots of platelets for your daughter.
Nitin

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Rixtuxan versus spleen removal 7 years 2 weeks ago #28812

  • alisonp
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Hi Firkins

It seems a bit quick to be talking about bringing in the big guns - Mia hasn't even been diagnosed for a year yet.

I think that the thing to check all the time with ITP is that you aren't doing more harm with the treatment than the illness is capable of. Splenectomy is definitely going out of fashion, but seems a bit drastic for Mia's level of symptoms anyway. Ritiximab also seems like quite a strong drug for that reason. Have you talked to the haematologist about TPO drugs - they might be more appropriate if you want to do something rather than nothing.

Good luck

Ali

P.S - just like Mia, Dougie's platelets didn't seem to agree with Spain. I literally watched the petechiae popping up on his face during the flight over there, and then spent the whole week worrying about whether Spanish social services would want to question me about his bruising!

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Rixtuxan versus spleen removal 7 years 1 week ago #28978

  • Nitin
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Hi all,
Since last 1 month, my BP is on higher side (130/90, with medication).
My doc told me this is due to steroid side effects. Also at times I get sever headache.
Is this due to Rituxan treatment? Any suggestions?
Thanks- Nitin

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Rixtuxan versus spleen removal 7 years 1 week ago #28979

  • Sandi
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Well, you can either keep tapering Prednisone, talk to your doctor about changing your BP meds, or try taking magnesium which naturally lowers BP.
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Rixtuxan versus spleen removal 7 years 1 week ago #28981

  • Melinda
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Nitin was your bp all right before prednisone? Sometimes it take more than 1 bp med to do the trick - also some "playing around" until the right med & dose brings & keeps blood pressure in the good range. Are you seeing your MD about your high blood pressure or your hematologist?

Regarding Rituxan I can't answer as I have not had it.


Edited to add: I take magnesium as it is supposed to help nerves and I have neuropathy - but I haven't seen that it has lowered my bp.

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Rixtuxan versus spleen removal 7 years 1 week ago #28983

  • Sandi
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Melinda - maybe your BP would be higher than it is now if you weren't taking magnesium :evil: . You know me, devil's advocate. I started taking it again a few weeks ago when my BP was going up ~ it did regulate it a bit. I actually had to cut back because I was getting dizzy when I stood up. It really helps to help relax my muscles which is the main reason I try to stick with it. Multi-purpose supplement it is.
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Rixtuxan versus spleen removal 7 years 1 week ago #28984

  • Melinda
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Nope - and stopping smoking didn't bring it down either.

And Magnesium hasn't helped with the nerves darn it. I still take it though.

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Rixtuxan versus spleen removal 7 years 1 week ago #28986

  • Sandi
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How much do you take? Just curious. I take 1,000 mg's a day. I was taking `1,500 and it was too much. Is your BP still high with BP meds?

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Rixtuxan versus spleen removal 7 years 1 week ago #28987

  • Melinda
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I take 500mgs a day. My bp is fine with my meds.

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Rixtuxan versus spleen removal 7 years 1 week ago #28990

  • Sandi
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That's good! :cheer:

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Rixtuxan versus spleen removal 7 years 6 days ago #28993

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Just diagnosed in July 2012. It's only been in the last week though that I came to understand the seriousness of what I have. I guess that's my fault for not reading up enough until now. I'm on Prednisone but as seems typical when it's lowered my platelet counts drop (to low twenties or high teens). Right now I'm on 20mg daily with count in the higher 40's. Doctor wants me to try Rituxin but I admit I'm afraid to do so just yet.

My question is whether anyone has heard of weight loss leading to a remission? I'm about 30 pounds overweight and now very, very committed to losing that weight as well as eating as healthy as possible. Luckily my wife is a super healthy eater so I won't have issues there. Just hoping this might be enough to send my ITP into remission before doing anything more drastic like Rituxin. The more I read though the more I don't believe I would ever agree to a spleenectomy. I was completely unaware of my issue until a physical as I was and still feel that I'm symptom free.

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Rixtuxan versus spleen removal 7 years 6 days ago #28999

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Hi Russ, weight loss won't help with the platelet count but eating healthily will help lessen the side effects of the prednisone. Rituxan is fairly heavy duty but lots here have used it. It is said to work for just less than 50% of those who try it. If you're not having any bleeding symptoms then you have time to consider your options. Good luck with whatever you decide to do.
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Rixtuxan versus spleen removal 7 years 6 days ago #29002

  • Nitin
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Hi
Thanks Sandi, Melinda.
My BP was normal before ITP.
Today I saw my MD who diagnosed a viral infection as cause for my headaches.
My BP is keeping normal with medication.
My Hema never advised Magnesium supplements to me, right now I am taking Vit D supplement.
Nitin

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