Help? ITP Recurrence

I was diagnosed with ITP in 2009. I am 21. For treatment I tried steroids, Rituxan, and finally had a splenectomy. Steroids would only work for about a week and they made me too sick to function. I had an allergic reaction to Rituxan, and it almost killed me. After I did the splenectomy, I went into remission for a year and stayed there until about one month ago. Now my platelets are dropping 200 per two weeks steadily so I have to get more treatment when they hit 100. I get a lot of symptoms with my ITP and have other health problems so I have to treat my ITP. I knew I would come out of remission, I just didn't expect it to be so soon. I had a ultrasound done for other problems and they found an accessory spleen. I don't know how my surgeon could have missed it when he did the initial splenectomy. Heck, I don't even know if it was there. Anyway, the doctors are suspicious that the accessory or artifact spleen is damaging the platelets. I have so many other things going on, I really had hoped that my count would just stay up. (I just got a permanent feeding tube and oxygen due to my other health problems.)

Have any of you had an accessory or artifact spleen? What treatments are helpful that aren't steroids or rituxan?

I've read on these boards messages from those who discovered they had accessory spleens--maybe you could do a search for those messages. Was your surgery laproscopic? I think it's harder for them to see an accessory spleen with that form of surgery. Or perhaps the second spleen grew after the original surgery?

Hi Sonny,
I've had ITP in 1988 and had my spleen removed with pred. treatment for one year and went into remission for 20 years. No one told me that it could come back. It come back in 07 while on vacation in Las Vagas. The doctors here could not get it under control, counts always low and treatments don't work. I feel like I had them all IVIG, Pred, Rituxan, platelet infusions, N-Plate Spleen removed. In and out of the hosptials. Just the up and down roller coaster that alot of ITP patients have. I went to the U of M in Ann Arbor and they found that I had accessory spleens and had another surgery they stated that I had 4 of them and could only remove 3 of them because once they went in the other one was so small that they could not find it but it showed up on the test. "Crazy" So platelets still go up and down. But finally off the predisone and on Promacta. platelet counts are very good, side effects some what a problem. But I just started the Promacta one month ago. Hang in there. You'll get to know you body and how it works with ITP. with other health issues it hard to figure out what is what. But I total know what you are going through I to have other health issues.

Hi Sonny,the spleen can grow again after a surgery so it might not have been missed.I was diagnosed in 2000 with itp and tried every thing alternative and conventional, in 2002 I had my spleen removed lapro. I didn't have any problems for almost 2 years. I did a course of pred for about 3 weeks and stabilized. To make a long story short this happenned 3 more times over 3 years. I found a common denominator and it was meds OC and prescribed for other ailments, sulfonimdes, nsaids, aspirin and even some herbal drugs, anything that can thin the blood and even prescribed drugs that don't thin blood. I realize everyone can respond differently, but Iv'e been in remission for almost 8 years now. Something to consider. Best Wishes to You. Sincerly, Mike Mayer

P.S Strongly consider removing accessory spleen

Sorry to hear that treatments have not worked for you!! Especially the Splenectomy. I was dx'd in 2004. Was on Prednisone, had two Platelet transfussions and two Rituxan treatments. Over two years since the last treatment. I pray that you find a treatment that will help you!! You have a great support group here.

Hi

I agree with miketam2003 that another splenectomy makes sense. If one goes into remission after a splenectomy but then ITP returns and an ectopic spleen has grown then doesn't it make sense that the new spleen is the culprit?

My main concern is that you mentioned your feeding tube and oxygen- whether you're up for the surgery.

I wish you well!
M