Prednisone, WinRho, Rituxin, Splenectomy Next?

So I was diagnosed with IPT about 5 weeks ago, so far I been on Prednisone, WinRho (one time), Rituxin (I had my third treatment yesterday) and I'm having WinRho once again tomorrow. Currently my count is at 7,000. All these medications have not been able to bring my platelet count higher than 50,000 (except one time to 96,000) but after just a couple of days (2 or 3 days) it goes down to 10,000 or less. I'm receiving platelet transfusion almost every 3 days to try to keep it above 10,000.

I know all bodies are different and know that some of these medications may take a while to kick in; however I'm wondering at what time should I contemplate a splenectomy. I been reading about it and know that is not a "for sure" fix. I know it may or not may work, but I'm wondering when should I really start contemplating going for that option. My doctor recommends for me to wait a couple of more weeks but even at that I wonder if I should even go for it or wait more time. Is there a suggested time of when I should really consider and go for a splenectomy after my initial treatment? any comments or suggestions would be greatly appreciated. Thank you

Anything we say is just personal opinion but it is usual to wait at least 6 months or a year to be sure that you aren't one of the lucky ones who have acute ITP that will resolve on its own in time.

After that it really is just up to the individual. I decided early on that I wasn't going that route so after the usual steroids and IVIG and WinRho, I tried the immunosuppressives, CellCept (mycophenolate) and Imuran (azathioprine) and then moved on to Nplate (romiplostim) which was my last resort drug.

However having said all that, it isn't usual to give platelet transfusions unless there is serious bleeding so if that is the case then you are going to want to move faster. If you're not bleeding and they are just doing transfusions to get your count up then I'd seek a second opinion.

I think I'd at least wait until you're 12 weeks past Rituxan. It can take that long to kick in. You're only 5 weeks into diagnosis and it can take some time to find a treatment that works. Ann is right too, a person can be acute and remit at one point.

Transfusions can do more harm than good, so I'd question using that for a treatment. There is something called "Post Transfusion Purpura" that can actually cause platelet counts to drop after transfusions. People can also serious develop reactions to them if they are used too much, which would take it out of the equation if you ever really need one in an emergency.

There is also recent research that states several problems that can occur from having a splenectomy, so make sure you do your research on that before agreeing to it. There is no set time to have it done, it depends on the patient and their individual case.

Polo, WOW, you have a lot of treatment plans running concurrently but definitely give Rituxan more time. I was unresponsive to Pred, 4 courses of Win-Rho and of course the Ivig which only worked for two weeks. I went the splenectomy route years ago and it worked, until my 10y anniversary. After another unsuccessful pred regime and all its joys, we started Rituxan. It wasn't until week 9 after my first Rituxan treatment (had the four weekly) that my counts jumped high and fast. I'm now 9 months post Rituxan and holding around 270 (I was @ 10). As others have said all Rx decisons are personal but I would try to wait several months before making the splenectomy decision. As you said it's not guaranteed to resolve the ITP and even if it does it's duration is unknown.

If your MD is a GP you'll hear a lot of recommendations to consider a hematologist. They, by profession, should have more knowledge, and perhaps experience with ITP. But due to the rarity of ITP like everything ITP that's a certainty.

Post questions freely and we'll share our collective experiences and insights - but prep yourself for what might be a new life path - and you don't have to walk that path alone or live in fear of ITP. Like everything in life, time adds valuable perspective.

I would wait as long as possible to make the decision to have a splenectomy. If you are in danger, if no other treatment works, then you might want to consider it. I had my splenectomy about 3-1/2 years after diagnosis. Unlike Steve, I didn't have anything near 10 years remission--I had maybe 10 weeks. Even if your spleen is originally responsible, your liver, my hema says, can decide afterwards to gobble up those platelets.

Definatly give the Rituxin several weeks to kick in. Who knows mabey it will kick in sooner that you think. There is just not enough positive reports of having a Spleenectomy. As already mentioned it may be acute and remit, so do not rush into a Spleenectomy. I had two Platelet transfussions that did not "stick". So, give the Rituxin a chance to work. I have had 2 treatments. First one took about a month to start working, lasted about11/2yrs. The last treatment is going on 19months.
Be patient and stay positive.
Take Care

Since you asked, I think it is wwaaaaaaaayyyyyy too soon for your docs to talk surgery. Your ITP might resolve on its own in a few months. Even if it doesn't, they haven't given the treatments time to work. Splenectomy works in about 55-65% of patients -- and those numbers are in question. I would hold off. There are new meds on the market and more new treatments on the horizon. Good luck to you!

Pretty much in agreement with everyone else here.
Six weeks is a very short period of time to begin thinking about a splenectomy.
Why are they giving you so many treatments at the same time? Not to disparage his work, but it seems like your doctor is stabbing in the dark there. That is a lot of different 'try this' in a very short period of time. And why platelet transfusions? As was said (unless your bleeding) it doesn't really do anything for ITP and the platelets just get destroyed.
I'd be getting a second opinion very quickly.
.

Polo, wondering how things are going?
The platelet transfusions do not make sense unless you are having bleeding issues. I was given two transfusions that did not last so that option was stopped cause it was not doing anything. The platelet transfusions were destroyed in a few days.

I might wait for a little bit too. I had a splenectomy and was in remission for 8 years and had 3 children. I have a friend who has been in remission 21 years post splenectomy. There is no guarantee, but it seems less risky to me than some of the newer drugs.

That depends on the person. For someone who is prone to blood clots, a splenectomy can really back fire later. Juggling blood thinners and low counts is difficult.

Polo said "I know all bodies are different and know that some of these medications may take a while to kick in; however I'm wondering at what time should I contemplate a splenectomy."

My daughter was diagnosed in january of this year and was put on prednisone for 8 weeks (that is how long it took to ween off the med) She had a severe reation to the prednisone. The Doctor tried two rounds of IVIg and one WinRho and those only lasted 10 days to 2 weeks each befor her level fell to 10k and below. Last week she had her Spleenectomy, Her platelet level is now 400k 6 days post surgery:)... But Complications developed her heart rate elevated to 150 and her blood pressure dropped to 67/37(3 days after surgery) and her antibodies are attacking her hemoglobin now and cant recieve transfusions. The alternative medication to raise her hemoglobin is using prednisone which is not a option for my daughter.
I agree with everyone here do alot of research and sole searching befor making a decision on a spleenectomy.
One thing that made our minds on a spleenectomy is she has no health insurance and I could not afford the medications any more, and at this time (here in florida) there isn't any patient assistance for drug coverage for the infusions.
Good luck with your treatments, you'll be in our prayers.

hi Polo, and others affected by ITP,

go through this post www.cidpusa.org/patient_story9.htm and see if it helps you. it may lead to something.

good luck!
-chuck

chuckhong wrote: hi Polo, and others affected by ITP,

go through this post www.cidpusa.org/patient_story9.htm and see if it helps you. it may lead to something.

good luck!
-chuck

Spam methinks!

not at all, Ann.

this is someone genuinely trying to share stories i came across while doing on own research on my 7cm-by-6cm splenic mass. i don't have ITP, but i did have Pylori and went through treatment.

anyway, do give it a read if you haven't. i just want to help others explore another possibility before having to resort to splenectomy.

cheers,
-chuck

I did read it. It sounded very odd as the person supposedly had all sorts of tests including a bone marrow biopsy, a chest xray, a sonogram and a CT scan which certainly isn't the norm for ITP. Her haematologist was shocked at a low platelet count.. funny haematologist then. And then the H Pylori breath test was negative. And there was much weeping and wailing and over reacting all in a one month ITP episode.

The site is selling an e book and a herbal remedy which promises also to cure Alzheimers, autism and heart disease. Please forgive me if I'm a tad sceptical.