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TOPIC: Rixtuxan versus spleen removal

Rixtuxan versus spleen removal 7 years 1 month ago #27738

  • Dean
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jchrism8 wrote: When my first count was checked, it was at ZERO !! while in the hospital it was brought up to 29,000. 3 days after I got out, it was checked again and had drop to 8,000....I had the Rutuximab treatment,Other than what I got in the hospital--- Im goin for my 2nd outpatient treatment next week. I spend alot of times in the bed to weak to do anything.. I sent all day yesterday in the bed as well. Today I up more but everytime I stand up I get dizzy... Its all new to me as well, I wish you the best with yours....


The pre-treatment meds will make you feel this way for several hours after the treatment. The low counts and the Rituxan can also cause these feelings. I experienced the same during Rituxan. Good Luck to you and Nitin with the rest of the treatments. Remember not to expect instant results with Rituxan. It can take several weeks after the last treatment before results can be seen. Counts may drop during and after the treatments. So do not get discouraged if you do not respond right away. Stressing out over the medication not working right away does not help. Stress can have an impact on this disorder also.
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Rixtuxan versus spleen removal 7 years 1 month ago #27741

  • DeeDee Marie
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Nitin,
So glad your first treatment went so well!! It's always good to be prepared. Just remember to be patient for your platelets to rise. Sometimes it takes a little while. Good luck to you.

JC--Sounds like you are new to ITP? I, too, have also had a count of zero before. Don't panic as it has happened to a lot of us before. I actually didn't feel real bad when my count was that low. Since you are on the Rituxan, it should start to bring them up; but, you will need to be patient as it may take a while. Good luck to you, too.
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Rixtuxan versus spleen removal 7 years 1 month ago #27882

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Jc- take it easy...at first it is very difficult coming to term with ITP. But try and get all the info you can, as on is available on this very good site and forum. I hope your treatment goes well.

I am going for my second round of Rituxan tomorrow, will post my experience.

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Rixtuxan versus spleen removal 7 years 1 month ago #27890

  • Dean
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Good Luck Nitin.
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Rixtuxan versus spleen removal 7 years 1 month ago #27927

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Second round went well without any hiccups. Although count before start was 3k, was hoping for better :)
2 more rounds to go and than hope for the best.

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Rixtuxan versus spleen removal 7 years 1 month ago #27939

  • DeeDee Marie
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Nitin,

Sometimes it takes some time for the numbers to go up. It's a really good sign that your infusion went to sell without any problems. My case was real stubborn last time I was in the hospital. My platelets didn't want to budge for a while.

Good luck to you!
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Rixtuxan versus spleen removal 7 years 1 month ago #27959

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Thanks Dee. I just hope this treatment works :) .

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Rixtuxan versus spleen removal 7 years 1 month ago #27961

  • DeeDee Marie
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Your welcome, Nitin! And, wishing you successful treatment and high platelets!
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Rixtuxan versus spleen removal 7 years 1 month ago #27977

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Stay positive Nitin. It can be discouraging when you are hoping for counts to increase and the oppisite happens. I got a bit discouraged during my first treatments as counts dropped and did not increase much until several weeks after the last treatment.
Good Luck!!!
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Rixtuxan versus spleen removal 7 years 1 month ago #28109

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Hi all
Had my third round of Rituxan yesterday. Went well, infact I slept through most of the treatment. :cheer:
Keeping my fingers crossed.- Nitin

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Rixtuxan versus spleen removal 7 years 1 month ago #28110

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That is great Nitin! My fingers are crossed for you too!

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Rixtuxan versus spleen removal 7 years 1 month ago #28111

  • Sandi
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One to go! :laugh:
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Rixtuxan versus spleen removal 7 years 1 month ago #28112

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Nitin,
So glad it went well! Now, you're on the final count down!
Good luck to you.

Dee Dee
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Rixtuxan versus spleen removal 7 years 1 month ago #28139

  • Nitin
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Thanks everyone for your wishes and encouragement.
As my counts are still in 3-5k, my doc is suggesting IvIg until Rituxan comes into effect,
but I am not too sure as two treatments together might interfer? Any suggestions?

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Rixtuxan versus spleen removal 7 years 1 month ago #28142

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Personally, I do not like the idea of starting another treatment while still in Rituxan treatments. How are you to know if the Rituxan is working? As long as you are not experiencing any bleeding symptoms, I would consider holding off on the IVIG. It is your decission. I am sure it is discouraging, but try to stay positive.
Good Luck!!!
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Rixtuxan versus spleen removal 7 years 1 month ago #28154

  • ddinap@aol.com
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IVIG and RItuxan work in different ways. I had both as well. I had IVIG right before the RItuxan b/c my counts were at 10. The Rituxan still worked for me. The IVIG will increase your levels but only for a week or 2. By then you will have a better idea if the Rituxan worked.

Hang in there. About 3 weeks after my last treatment the Rituxan kicked in and I have been between 170-200 since then and am finally off prednisone.
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Rixtuxan versus spleen removal 7 years 1 month ago #28163

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Nitin,
Have you ever had IVIG before? The doctor probably just want to give it to you to be on the safe side. It will bring up your platelets just temporarily. I've had it before (actually, about 5 times over a one-month period). You just have to remember that it will bring it up just temporarily.

Are you having a bleeding symptoms? That is what the doctors mainly worry about. I was getting blood blisters for a while; but, after a couple of weeks, the symptoms slowed down and I hardly had any.

Good luck to you Nitin and try not to worry too much. It does take a while for Rituxan to start working.
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Rixtuxan versus spleen removal 7 years 1 month ago #28170

  • Sandi
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You can have them both at the same time (not together, on separate days or one after the other).

Anyway, IVIG will give you a temporary boost. If counts stay up after a few weeks, you'll know Rituxan kicked in. If they drop, you might have to wait a few more weeks to see if they start going up.

My counts were in single digits when I was getting Rituxan. My hemo asked me if I wanted Prednisone to boost me before Rituxan kicked in but I chose not to. Some prefer a booster drug and that's fine too.

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Rixtuxan versus spleen removal 7 years 1 month ago #28221

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Hi everybody, tomorrow I am going for my last Rituxan dose...
Thanks all of you for advice and encouragements.
Will discuss with my doc regarding IvIg until rituxan kicks in...
Will update later....
Nitin

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Rixtuxan versus spleen removal 7 years 1 month ago #28253

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My last Rituxan treatment went as well.
Now will wait n watch.
Mean time to increase my count (last count 6k) doc is suggesting IvIg or Promacta??

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Rixtuxan versus spleen removal 7 years 1 month ago #28255

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Wow - those are two totally different ways to approach it. Do you respond to Prednisone at all?

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Rixtuxan versus spleen removal 7 years 1 month ago #28256

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Not sure what Promacta is, but IVIG worked well for me. I had no side effects at all from it or during it (and I had a lot from the Rituxan). It raised my counts a lot very quickly, but it only last about 10-14 days, then it dropped again. I had 2 of them within a few weeks. But it is an easy option, and hopefully by the time it wears off the Rituxan will kick in.

GOod luck!

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Rixtuxan versus spleen removal 7 years 1 month ago #28257

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I wouldn't use Promacta just yet. If the count raises you won't know if it's the Promacta or the Rituxan doing it, and you won't know whether to stop the Promacta or what. I'd wait a bit to see if the Rituxan is going to kick in first. But then I like things to be neat and tidy and I don't like to feel I've lost control for myself!

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Rixtuxan versus spleen removal 7 years 1 month ago #28259

  • Sandi
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I'm glad you said it, Ann. I agree, but didn't want to be the only one with that opinion. I'd definitely think about Promacta after I was sure Rituxan didn't work.
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Rixtuxan versus spleen removal 7 years 1 month ago #28261

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I agree with Ann and Sandy. You sure wouldn't know which one is working if you do the Promacta. The IVIG (maybe with a slow drip) should bring up your count for a while if the doctor is concerned.

Good luck to you Nitin!
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Rixtuxan versus spleen removal 7 years 1 month ago #28270

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Prednisone didn't work for me.
During Rituxan treatment I was on 40mg Prednisone and had developed few bruises
and mouth blisters. My last count are 6k, thus doc advised to reduce steroid dosage
(as it is not working)and have IvIg or Promacta to elevate plt count. I will probably go for IvIg.
Nitin
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Rixtuxan versus spleen removal 7 years 1 month ago #28286

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Agree with the others. I would wait with Promacta untill you are sure Rituxan has not worked. IvIg would be an option if you need something to raise counts a bit. Promacta is to be my next treatment if needed.

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Rixtuxan versus spleen removal 7 years 1 month ago #28289

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Hi all, I am from South africa, Johannesburg, I was dignosed with ITP in my early teen years by a physician who was not clued up on ITP, fortunately I later discovered another good oncology hospital where Im currently being treated, I have two wonderful boys one born in 2010 and the other 2011, both pregnancies were meraculous I must say. Lately Im feeling scared having to look and my kids and thinking I might not see them when in their first year of school because of this illness, I had been on a series of prednisone however early this year Iwas started azapress and slowly waning off prednisone last month however it not worning,Im always tired especially in the mornings and evenings , last platetet count last month (September) was 35 but then the doctor said we must give them a try until end of October, Im hoping and praying that the results will be different otherwise I will have to choose between mabthera or splenectomy, I have been following this thread and I must say it has lifted my spirits, more specificaly ddinap@aol.com’s story, my community and family dont understant much about ITP and Im not getting the support I need, I have gained so much weight from prednsisone I dont like what I see, sometimes I feel my husband it less attracted to me. Is Rituximab and mabthera the same?

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Rixtuxan versus spleen removal 7 years 1 month ago #28290

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Hi,

Yes, the tradename for the drug rituximab is Mabthera in some places, Rituxan in others. So all the same thing. The Azapress drug you are on now is otherwise knows as azathioprine or Imuran, so others who have taken those might chime in. It can take three months to work so hang in there. Is the tiredness due to weaning off the steroids or to the ITP? If it's the steroids then it should pass and you could live with a count of 35 just fine, but if it's the ITP then you might want to treat to get a higher count. Many have had success with the rituximab although I have not tried it myself.

I wouldn't worry about dying just yet, very few people die of ITP, even those who never get their counts up. We do see some with bleeding problems here but then we don't see all those who have no problems and just get on with life, as they don't feel the need to post here.
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Rixtuxan versus spleen removal 7 years 1 month ago #28292

  • Sandi
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Rituxan has done wonders for those who respond to it. There are many success stories.

Tapering from Prednisone can cause fatigue for a few months after stopping the drug. It will get better soon.

As Ann said, very few people die from ITP. Try not to worry about that. You'll be fine!

Most people do strive for normal counts, but it's not necessary to have normal counts. A count of 30 and above is considered a safe count, so if you can maintain that, you are doing okay. Stick with us and read. You will learn a lot from others experiences.
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