Splenectomy or Rituxan???

I am relatively newly diagnosed (2.5 years)with ITP and was pregnant for 18 months of that time so I was waiting it out to see if my platelet level would return to normal on their own. That's not happening, currently have a count of 9. My doctor has tried prednisone but it didn't work and IVIG only lasts a few weeks.

Needing to do something. My doctor is pushing for the splenectomy,she told me that's the next step, but i'm uncomfortable with making the decision. I have had a second opinion and that doctor basically said the same thing.

Wondering what other people with this problem have done? Or what they would suggest???

Any help would be appreciated! Thanks in advance!

Crystal

Hmmm....there are more 'steps' than just one. Have either of them discussed any other options with you? Were they open to Rituxan?

She originally told me that if I wouldn't do splenectomy then she wouldnt follow me. Now she seems to have changed her mind or the dr that i got the 2nd opinion from said that they would do the Rituxan if that's what i chose

Crystal - my daughter's endocrinologist tried to force a treament on her that we didn't agree with and she told my daughter the same thing....that she would quit being her doctor. We said fine, we don't want you anyway and found a new one that did go along with what we wanted. The drug my daughter wanted is a very well recognized and approved medication for Graves that she had been on for the past two years and was doing very well with it. There was no reason not to continue with it.

Anyway, you have the right to make your own decisions here. Both Rituxan and splenectomy are valid treatment options, but so are the new TPO's, CellCept, Imuran, Decadron, etc. No one treatment is any better than the other, it's just a matter of trying to find the best one that might work for you, your pocket and your lifestyle.

I was given the choice of Rituxan and splenectomy and I chose Rituxan. This was in 2003 and there were not that many choices available like there are now. Anyway, I have been able to avoid splenectomy because of Rituxan.

I had the treatment of rituxan and it does help most the time unforch for me it didn't so i had to get the spleen taken out i was nervous at first but it was my last resort.....my platelets are now up to 500,000 and i was and 2,000 originally so my surgery was dangerous but that is a last resort for people.....there are other things that can be done be advice if u do the rituxan it can take 2 to 4 weeks to actually start working.....i just had my spleen out about a month ago and my platelets jumped the fast.....but there are other things that can be done i was told about but there really pricey ...i was told most the time the rituxan does work.

.....good luck with your choice you just need to do whats best for you and what you feel you can handle.

What Sandi said. There are a ton of other treatments (besides Prednisone and IVIG) available to try before kissing body parts good-bye in an iffy proposition.

IIRC, a splenectomy was THE uber-cool new ITP treatment.......98 years ago.
Think about that...1913; Woodrow Wilson was president, WWI had yet to start, Henry Ford's Model T was barely into production, leeches were standard medical instruments, and penicillin wasn't even developed yet.
And with a 40%-50% chance of a splenectomy working at all, it's not what I consider good odds.

Sure, the new TPO's are expensive, but most insurance plans cover all but a co-pay (I only pay $60 of the $6,000 a month cost for 50mg Promacta). I believe both manufacturers also have plans for folks without insurance.

If my hematologist told me that I had to do a specific treatment or he'd drop me, he would not have to drop me....I'd drop him.

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I love reading this stuff. I've had ITP for 3 years and was only given Prednisone. After a few relapses, my oncologist said take the spleen out. I haven't heard of any of these medicines until I stumbled on to this site. What an eye opener. Platelets have been down in the single digits but on prednisone, which i hate, they go up to 118. Super scared about spleenectomy. Gonna ask about the other options.

jbcloud -

For what it's worth, I'd try Rituxan before considering a splenectomy. My wife had the four weekly Rituxan infusions this summer and has had great results and absolutely no negative reaction. I know everyone's response is different, but if it works, a long term remission is possible. From what I've read, the chances Rituxan will work are at least the same as a splenectomy. Seems obvious Rituxan should be tried first. A splenetomy is irreversible. I might also add that ITP patients that respond well to steroids (prednisone, etc.) tend to repsond well to Rituxan.

Jim

Ditto on the Rituxin. When my Dr was on vacation I had to see another Dr and the first thing he said was, when are we going to schedule a Spleenectomy? Caught me off guard. I said that is an absolute Last resort for me. There is not enough of a long term guarantee with a Spleenectomy. Once it is removed, it is gone. Plus you are at a greater risk of infections that last longer and still have low counts. I have had two rounds of Rituxin. First one took several weeks to kick in and lasted 16 months. Second one took less time to kick in. Going on over 2 years now with normal counts. Is is your decession on what treatment you want. The Dr can suggest treatments, but it is ultimatly your decession.
Also, as I always say with Rituxin, check with your insurance first.

I was diagnosed with ITP in 1997. At that time I went on a series of prednisone treatments until I graduated from high school. When my count dropped again after taking prednisone, I had a splenectomy. It worked for about 1 year and then I had to go on another series of prednisone treatments. I have never tried any other treatments, because I have a really great response to prednisone. Let me rephrase that, I personally do not have a great mental/physical response to prednisone--but my platelet count tends to skyrocket after taking prednisone. For me I think that having a splenectomy was the best route since I am very sensitive to medications and tend to have reactions to just about everything. Good luck in making your decision.

Maybe I read it wrong, but why do you feel that having a Splenectomy was a the best route, when it lasted for a year and you had to go back on Prednisone?

Hi guys, my son (10yrs old) doctor is pushing for splenectomy now, we havent tried Rituxan yet, the only medicine we havent tried..We have trauma before that my son developed a peripheral neurophaty after taking his 1st dose of vincristine and was in coma for 3 days( he was 6 year old then) and survive the ordeal, and now still suffering for very low count from 3 to 10K only.

Would it be better is we take Rituxan first? we are just afraid of the side effects from it...or we take splenectomy?

Thank you,

Erwin Ciar
Philippines

Is your son bleeding at all? If not there's always the option of not treating. Some doctors won't treat children at all and they still do just fine. Is a second opinion possible?

not before..now bleeding in nose and throat, he's count at zero to 20k at most..he is very symptomatic with a lot of small hematoma and small red dots..why are they not treating children?

Dean,

I think that for me it was the best route, because pre-splenectomy I would take prednisone and my count would drop. Post-splenectomy I tend to only have to take prednisone once per year or so. When I take prednisone now (even though I don't love to) my counts jump up quickly and tend to stay around the 60s to 100s for an extended amount of time. Personally, I think that this was the best option for me at the time.

OK, just wondering.
Thanks