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TOPIC: Rixtuxan versus spleen removal

Rixtuxan versus spleen removal 7 years 2 months ago #27095

  • Dean
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What are your counts? I refused to have a Splenectomy between my Rituxan treatments. There are risks either way. Side affects of medication or increased risk of getting a serious or life threatning illness with a Splenectomy.

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Rixtuxan versus spleen removal 7 years 2 months ago #27102

  • DeeDee Marie
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Dontash,
I had very low platelets like you (I've had ITP for over 6 years), and was in the hospital for two weeks with platelets off and on at 1000. I know just how you feel and you are very young. You must have had low platelets to have ended up in the hospital and that's why you are feeling bad about the whole situation.

I agree with Dean and Karen. I would never have my spleen removed--but, again, it is a personal decision and only you can make it. There are some others on the site that have had success with splenetomy. The success rate is usually about 10 years for some. I am older and my success rate is what Karen mentioned.

There is also Rituxan that you could try. It seems a lot of ITP patients do try Rituxan before going on to N-Plate. Try and do your research so you make an informed decision.
Good luck to you!

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Rixtuxan versus spleen removal 7 years 2 months ago #27105

  • dontash01
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Early April I had a rash and gums wouldn't stop bleeding. Took a trip to see the doc - I was at 5K. At my highest (on steroids) I was 286K and my lowest (after a platelet transfusion) 4K. As soon as I came off the steroids, I dropped very quickly back down to 7K. After the IVIG I've been around 73-92K (my count this morning). I'm retired Navy and also a dependent spouse - all of my medical care is at a military hospital. I wasn't given Rituxan as an option only Nplate or splenectomy. I know there is a chance that the surgery won't work - but I'm hoping that it does.

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Rixtuxan versus spleen removal 7 years 2 months ago #27107

  • DeeDee Marie
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This is a decision that only you can make. And, with the military offering you only two options, it does make it a hard decision (my husband also gets treatment at the veterans from time to time). The only other option would be to stay on steriods for a while longer until you can think this through.

Good luck on whatever decision you make and hope your platelets go back up.

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Rixtuxan versus spleen removal 7 years 2 months ago #27126

  • Dean
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Good Luck! Fingers crossed!!!

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Rixtuxan versus spleen removal 7 years 2 months ago #27128

  • ddinap@aol.com
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what steroid level do you have to be on for your platelets to stay ok? i just finsihed rituxan and have decided if it does not work i will just stay on the lowest dose of prednisone possible. when the prednisone starts to not work, i will consider removing the spleen. if you can stay on a low enough dose of prednisone adn have your platelets be ok and feel ok, you may want to do that. at the lower doses you are less prone to the steroid side effects.

my doctor does not seem to like n-plate, so he has not offered it to me. i live in MA where health insurance costs a small fortune, but you can get any treatment you want without issue, so i tried Rituxan.

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Rixtuxan versus spleen removal 7 years 2 months ago #27130

  • Ann
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I wouldn't stay on steroids at any dose, not for ITP. It causes all sorts of side effects eventually no matter what the dose and for ITP it's just not worth it.

As someone said.. Nplate may have long term side effects, steroids definitely will.
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Rixtuxan versus spleen removal 7 years 2 months ago #27137

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As someone who just went through hell on rituxan, i would much prefer to be on low dose steroids than to do anything that has any kind of side effects like the Rituxan. if i could have gotten myself to a low enough dose of steroids i would have just stayed on that. At least that is something you can take at home and don't have to go to the hospital for, and the side effects at a low dose are nothing like those of some of the infusion therapies. I had chemo like side effects to rixtuxan and lost an entire month of my life on it. if the dr had been able to get me to 10mg or less of prednisone i never would have chosen to do the infusions.

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Rixtuxan versus spleen removal 7 years 2 months ago #27140

  • DeeDee Marie
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dd,
Their are others on this ITP board who also take low doses of steriods to control their ITP. I, myself, would probably not mind compared to the very, very high doses of Decadron I went through. Plus being in the hospital for two weeks. I agree with you. Plus, one of the top doctors at the ITP conference told me (because of family history) not to take N-Plate or Promacta. So, I don't have a lot of choices if I do relapse again.

Karen is one member who stays on low doses of Prednisome.
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Rixtuxan versus spleen removal 7 years 2 months ago #27152

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The long term side effects from corticosteroids include cataracts, glaucoma, osteoporosis, muscle weakness, stomach ulcers, tremor, diabetes, and vulnerability to infections, meaning that if you get an infection it is likely to be much worse. So if you are considering long term steroids at any dose, watch out for these things and take precautions.. take something to protect the stomach and to protect against osteoporosis, get regular diabetes and eye checks.

Of course if there's absolutely no other option then you have to do what you have to do but if there's another option then steroids are not the answer.
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Rixtuxan versus spleen removal 7 years 2 months ago #27154

  • Sandi
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I've been on Prednisone for 7 years, but not for ITP. I can tell you that it's done a job on my body. I have no muscle tone and have a lot of muscle weakness. My skin is thin and takes forever to heal. My teeth are constantly a mess (cavities). And I recently had spinal stenosis that required surgery, most likely due to steroid induced bone degeneration. My face has been round for so long that I don't know what I would even look like without the steroids.

There have been people here, even young ones, who have needed hip replacements due to excessive steroid use. Avascular necrosis is a real risk.

It sounds like a good idea, but 10 mg's or less may not be enough to hold a count up. It might work for some, but the long term side effects can ruin your body for life.

I also had a bad reaction to Rituxan. I had serum sickness, twice, which was horrible to go through. The second time I never really recovered and it turned out that the reaction triggered Lupus. That was when I started the steroids on a permanent basis, and I can't get off of them. I've tried quite a few times, but my adrenals are probably shot by now.

I would not have stayed on steroids for ITP, especially when there are other options out there. You start out thinking that nothing will happen for a long time and you can just worry about it then, but it catches up with you. It's one thing if you are in your 50's or older, but any younger than that and you are really risking your health at an early age.
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Rixtuxan versus spleen removal 7 years 2 months ago #27158

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Sandy, This is all very true. Prednisone can really do a number on your body. I was talking about Karen who is older and does take it to control her ITP; she seems to do okay.

Sometimes, it's like a no-win situation. I did attend the conference and met some people that nothing seems to work for them (even a very young girl) and they live with very low platelets (around 10,000). And, sometimes you try some of these meds and they don't work for you--but, you can end up in a worse situation (met one older lady like this-she was heading towards MDS).

But, there are so many success stories. Each person needs to look at their own family history, their own body and how they do with meds, and then decide what kind of risk they will take. You were so young when you started on Prednisone, but you felt like you had made the right choice at the time.

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Rixtuxan versus spleen removal 7 years 2 months ago #27163

  • Sandi
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I was initially given Prednisone 7 years ago to treat the serum sickness on a temporary basis. Because the Lupus symptoms began then, I couldn't get off of it. ITP wasn't a consideration.

Yes, everyone has to do what is best for them. Just be aware that the long term consequences can be serious.

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Rixtuxan versus spleen removal 7 years 2 months ago #27168

  • ddinap@aol.com
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The thing that sucks about ITP is there are long term side effects to everything! I did Rituxan (stopped reading the side effects for that after the first page b/c it scared the hell out of me) for the sole purpose of getting off steroids. I have been on them since January of this year now, and i am only 34! I hate being on them, though once i am down to 15mg i have no immediate effects from them. Of course that is not always enough to keep my platlets in a decent range. My doctor does not like n-plate. He said it has been shown to cause things like leukemia down the road, and splenectomy has it's own risks and side effects and immune issues. Compared to some of those, the steroid effects don't seem as bad.

Right now i am 2 weeks off Ritucxan and my levels were 175 yesterday, up from 155 last week! I am hoping that means it worked! I am down to 10mg prednisone right now and hoping to be off in the next few weeks if my levels stay in the same range. My hope is that the Rituxan will help for a few years and by then there will be another, better treatment option!
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Rixtuxan versus spleen removal 7 years 2 months ago #27169

  • Ann
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Good luck with your count, ddinap. I wouldn't hold your breath about different treatments coming along. It takes years and years for a new drug to get to market and there's nothing coming along at the moment that isn't either another IVIG or another TPO (like Nplate).

I tell you what's really interesting about all this, is that those of us who were here a few years ago with little choice of drugs.. IVIG, steroids or immunosuppressants basically, were really excited when Nplate and Promacta came along. We watched them being trialled, some of us even trialled them and we were so pleased to have a drug that didn't cause all the awful side effects we'd had to put up with and none of the dangers of constant immunosuppression. And now, it's really weird to see the new patients taking those drugs for granted and even not liking them. It's completely understandable and quite interesting to see.

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Rixtuxan versus spleen removal 7 years 2 months ago #27173

  • ddinap@aol.com
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I think people's views on treatments depend on their drs views. I know my Dr is young, so maybe the older doctors think differently about it. The older dr i had initially wanted to keep me on prednisone forever, adn i am 34! She had no intentions of taking me off it. When I changed doctors, he just happened to be a lot younger and told me about all these treatments I had never even been told of before (like IVIG, Rituxan...). He also told me that there is a new blood test that tells them whether splenectomy will help or not. He said insurance wont' always pay for it b/c it is so new, but if the Rituxan does nto work I woudl be willing ot pay for it myself to have a better idea if surgery woudl help. It is all just point of view and what you have seen and experienced. My dr said he has never seen anyonen react to Rituxan the way I did for the 4 weeks. He said he sees people react that wya to IVIG, to which i had no issues at all. So, you just never know.

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Rixtuxan versus spleen removal 7 years 2 months ago #27174

  • Sandi
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Hopefully DD, Rituxan worked and you won't have to think about other options. I was about as old as you when I was diagnosed. Rituxan and TPO's were not around then....choices were limited. I mainly did steroids until Rituxan came along.

I do think the age of the doctor matters in some cases.

One thing that has changed too is the mind set. It used to be that normal counts were the only acceptable way to go. Now, just being over 30 is acceptable and livable.
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Rixtuxan versus spleen removal 7 years 2 months ago #27175

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That's right, DD; Rituxan has a very good chance of working for you and I would just try to relax a little and try to let your body rest up.

I agree with Sandy. I could completely live with a count of 30. As long as you get any bleeding symptoms under control--that's what really counts.
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Rixtuxan versus spleen removal 7 years 2 months ago #27183

  • ddinap@aol.com
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I am optimistic about the Ritixan, since this is the first time in 8 months my levels have been "normal" on such a low dose of prednisone. I get my blood drawn tomorrow morning, then Saturday I am taking my kids to Disney for a week so I am hoping they are still "normal" or even higher and I will be able to go all next week without getting my blood drawn down in Orlando! I haven't done that in a long time!

I too was perfectly healthy with low levels. The night before I found out my levels hit 10 and I went for a 5 mile run and spent the whole day chasing my 2 boys around the pool in 90 degree heat! I was on my way to the beach when the doctor called and told me I had to come in for emergency IVIG! The next day when my levels hit 30 I was back out running again! The only time I have ever felt lousy was during the Rituxan treatments, but if it works for a few years, it will have been well worth that one month of hell!

Ann - as long as i am going to have this disease I will never give up hope that something newer and better will come along. I live in MA, where some of the best medical procedures and treatments in the world are developed and utilized. Some times the best things are discovered by accident, and you never know when that will happen! :)
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Rixtuxan versus spleen removal 7 years 2 months ago #27184

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Good luck to you on your next blood draw! Have fun in Orlando with your kids--but don't forget to rest a little, too--after all you've been through.

It sounds like you are going to do just fine and it's good to think positive.

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Rixtuxan versus spleen removal 7 years 2 months ago #27188

  • debrasla
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my son(22) was diagnosed 9 months ago, started bruising after 2 weeks of some supplement he ordered on line to bulk up, did the blood work and his platelets at that first time was only 10,, so there were times these past several months(latest was yesterday) that his levels were 3, 5, 7 or 10 and he felt fine(to the point he was in denial yesterday and did not want anymore treatment and didnt want to be admitted for the Winroe), but he went after cooling off and had the treatment again. As the doctor and us have told him, EVEN though you feel fine, all it takes is for a stroke to happen, a blood clot, aneurysm, bleeding, etc. He has to manage this and take care of it and will have to for the rest of his life.

I told my son, thank GOD that he doesnt have cancer, THANK GOD he is not a diabetic and having to take insulin and thank God he and us have insurance for him:) I told him it is a headache that we have to deal with and get managed and one day maybe he wont have to be seen each week and maybe someday, he and you will have it managed.

It does shake up our world and your world,but we all have to deal with it. This site has been a wonderful site for help and just venting and also educating oneself.

Hang in there and keep posting for help if needed. Sandi on this site is excellent for helping us scared mothers, parents, patients:)

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Rixtuxan versus spleen removal 7 years 2 months ago #27211

  • ddinap@aol.com
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I think we all go through those stages of anger and denial. I know I did. And I know my mom did as well. She was out of the country when I got diagnosed and I remember talking to her over Facetime and us both crying hysterically! It was so scarry for both of us.

It really took until I went for the Rituxan infusions for me to accept this. I sat there for 4 weeks with people that were so sick, probably dying, and on chemo and whatever else to fight cancer. As bad as I felt, they looked so much worse, and it was so depressing for me to see that. It made me thankful that I only have ITP and not what they have. Yes, I am going to have to monitor this for the rest of my life (which I hope is a long time, since I am only 34), but it is not going to kill me. At the end of my 4 weeks of Rituxan I got to go home and play with my kids and feel better every day. Some of the people in infusion with me were on their 12th weeks of chemo! So I think it will get easier for your son, it will just take some time.

I wish your son the best of luck! I have a friend who had great luck with Winro. She has been in remission for 2 years now! And she had very little side effects with it, and said it was only a 15 minute infusion every week.

My doctor thinks that the Rituxan I had has worked. So, if he has no luck with Winro, maybe he could try that? Today my levels were up to 180! I don't even need to get my blood drawn when I go to Disney next week! This will be the longest I have gone without having my blood drawn since I was diagnosed back in January!

So, hang in there, hopefully the treatments work for him!

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Rixtuxan versus spleen removal 7 years 1 month ago #27598

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I am going for my first round of Rituxan tomorrow, needs all the wishes.
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Rixtuxan versus spleen removal 7 years 1 month ago #27600

  • DeeDee Marie
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Nitin,

Wishing you the best in your treatment tomorrow. Wishing you high platelets and
that you have no bad reaction to Rituxan. I bet you will do just great!
Dee Dee
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Rixtuxan versus spleen removal 7 years 1 month ago #27601

  • Sandi
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Good luck, Nitin! It will be fine!
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Rixtuxan versus spleen removal 7 years 1 month ago #27606

  • Dean
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Prayers for you Nitin!! I hope you tolerate it with no issues!! Just remember to stay positive. You may not see much of a change right away. Your counts may rise and fall during and after the treatments.
Good Luck!!
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Rixtuxan versus spleen removal 7 years 1 month ago #27609

  • ddinap@aol.com
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Good luck tomorrow!

It took me close to a month for my platelets to go up, so remember to hang in there. Mine are now 200! they were 10 the week before I had the treatment!
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Rixtuxan versus spleen removal 7 years 1 month ago #27661

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Thanks to all...
My first round went well, I experienced throat dryness and bit of heaviness in head..
otherwise I was fine.
My count before was 17k before start, hoping for the best next time.
I was prepared for this due to all the info and discussions on this forum.
Thanks again Dee Dee Marie, Sandi, Dean, ddinap and all. :)
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Rixtuxan versus spleen removal 7 years 1 month ago #27664

  • Sandi
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I'm so glad it went well! Next time should be even better!

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Rixtuxan versus spleen removal 7 years 1 month ago #27735

  • jchrism8
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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....

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