Dr is recommending splenectomy over rituxan

Not too thrilled. Her dr went to a conference last week and her colleagues were all in agreement that splenectomy was the next step for Caitlin. I don't know what to think. I really want to try rituxan first. We will meet with her to discuss this after her rheumatologist appt in two weeks.

Wow Pauline - that is a big step. Did he give you any reasons?

Doing research now before I take Caitlin to see the drs next week (rheumatologist & hematologist). I am reading as much as I can to try to see whether splenectomy is really the correct "next" step for us. Splenectomy really has a high complete response rate in children. Then there are a couple who have a partial response. It looks like it is almost rare for children not to have some type of response from the majority of the articles that I've read so far. However, I did come across this particular article and wanted to know what you think: pediatrics.aappublications.org/cgi/content/full/111/1/87

Caitlin really doesn't have a good response to IVIG. I know this is just one article and it doesn't necessarily mean that it won't work for Caitlin. So, I wanted to ask...for those of you who have had a "failed" splenectomy...did IVIG work for you prior to having the surgery?

Pauline:

I have read articles that go both ways....IVIG predicts response and IVIG does not predict response. The article you posted was written in 2003 though, so I'd see if there is anything newer than that.

Thanks...I didn't realize the article was an older article. I was doing a google search on splenectomy in children and came across this one. I think alot of the articles I read must have been older because it says that they usually stay in the hospital for 3 to 5 days after the procedure is done and I thought this was done almost like on an outpatient basis since it is usually done lap??? (can't think of how to spell right now). If she will be out of school that long, then I will have to figure out what to do because she will be over her days that she is allowed to miss per semester. (They are not allowed to miss more than 9 days per semester and that includes excused absences. Her half days don't count against her, thank goodness.)

I think Caitlin is about to get sick again. Complaining about her stomach and head hurting again. Seems like this has been a common complaint for a few months now! She has ALOT of petechaie under her eyes and on her chest. This seems to be where she usually gets petechaie first and sometimes it spreads to other areas. I wish the rheumatology visit was tomorrow, not a week from tomorrow! I know it will be here sooner than I think though!

I really hope she has a good Rheumatologist. It can make all the difference. I've seen several, and some of them don't know what they are talking about.

My very first Rheumatologist (prior to diagnosis), dismissed me without doing any blood work because he said I "looked fine". I told him all of my symptoms plus prior ITP diagnosis and because I didn't have joint swelling, he told me I was okay. My Hematologist was the one who ordered the ANA and found it elevated. I was referred to another Rheumatologist who monitored me every 4 months and things went downhill from there. BUT - he listened.

Good luck Pauline...I know you are going through rough times with Caitlin right now. I truly hope things get better!

Thanks Sandi...I hope she has a good rheumatologist as well! I saw a rheumatologist last year for the first time and have not been back because they also felt like there was nothing going on with me even though I had joint pain and a positive ANA as well as some other test (I think Sed. rate) that was highly-elevated. She said it was not high enough for her to worry about it and sent me off with basically a muscle relaxer, which does nothing for me. She said that if I didn't have retinal & kidney problems, she wouldn't even see me because the blood tests really didn't reveal anything "way" out of the ordinary. It seems like you have to be in excrutiating pain for the drs to even flince nowadays! (Although I have an "overprotective" PCP who sends me off to have a test for every minor thing that is going on with me, hence the medical bills and negative results. I've been to a cardiologist, nephrologist, retinal specialist, pulminologist, gastro dr, and probably some others I can't even remember due to her wanting to make sure everything is ok. Only have to see the nephrologist and retinal specialist on a regular basis, thank goodness!)

Pauline:

Just from your description, that was not a good Rheumatologist. That really irritates me. A good one will know that autoimmune disorders can develop slowly and there are certain signs (elevated ANA, elevated SED, pain, etc) that indicate the patient should be watched. At the very least, they can help the patient manage things in the interim. Funny, my first Rheumatologist also gave me a muscle relaxer. I've been taking it for six years and didn't think it did anything either, until I decided to stop taking it. Within days, I had muscle spasms so bad I couldn't move. That is due to a problem I have with my neck though, not Lupus.

My second Rheumatologist insisted at every visit that I didn't have Lupus (fine, I didn't meet the criteria then), but he did prescribe meds that helped and he did do blood work every four months. Eventually, my dsDNA became positive and I had APS antibodies (which I asked to be tested for) and those gave me the criteria. One day he was telling me again that I didn't have Lupus and five days later after results were back he was calling to tell me that I did. I always liked him a lot because he listened to what I was telling him and he believed the symptoms even when blood work didn't prove it. Sadly, he moved across the country and I was stuck finding another one.

Anyway, if you know something is wrong, don't let yourself be pushed away. Usually if someone has renal problems, it's late in the game and could have possibly been avoided with proper care in the first place. I'm glad your PCP is on top of things!

My kidney problems really are a result of pre-eclampsia which turned into Toxemia, leading me to have several health problems afterwards. I don't think it is auto-immune related, but interestingly, I came across a clinical trial that is looking for participates with my kidney disorder to try Rituximab. Unfortunately, the study is in Indiana. It would be so cool to do this at the same time as Caitlin!

I always thought my kidney problem (FSGS) was from toxins in my blood (trying to reject my pregnancy since it was a foreign object)that basically created scarring of my kidneys, which allowed protein to go into my urine. I took both Prednisone & Cyclosporin for quite a while and I think these meds led to my joint pain. I guess I really should look for a new rheumatologist, but will ask my nephrologist for a referral so the two of them can work together.

The new article that came out in the PDSA newsletter today said that IVIG success rate does not indicate whether or not a Splenctomy will be successful. I have seen a specialist at UCLA at she said there really is no way of predicting who will have success, even though there is the test in Europe that some mention.

Good Luck. I do not know how old Caitlin is. I am in my 30's and have had ITP for 9 years. I tried IVIG, WinRho (what I have been using 1-2 times a month for the last 4 years) and Rituxin. For me I wanted to try the First line treatments and give it some time before going to the Splenectomy. I kept thinking I would go into remission, or a new treatment would come out that would be a "cure". I am now ready. I had to go to 4 different Dr.s before I found one that would work with me in steering the course of my treatment. All of them talked Splenectomy after the Steroids and first IVIG treatment. It is the standard protocol for most Physicians when looking at Chronic cases. After First line is exhausted they go to the Surgery after 6 months.

If she is a child or young lady maybe the protocol is different. If you are her Mom I would use your motherly instincts. If you feel you need to try somthing else before the surgery then you should keep asking the questions of your physicians or seek a second opinion.

I had my Hemo refer me to another Hemo for a 2nd opinion and that is another reason why I decided on the surgery.

Good Luck!

Jennifer

If you haven't tried NPlate or Promacta yet, is their a reason? I'd really recommend trying one of those before doing something so irrevocable, their can be dire complications from being spleenless.

Yes, my 11-year old (almost 12, this Friday) daughter has already tried Nplate. She was on it for 2 years. She can no longer use Nplate or any TPO due to increased reticulin in her bone marrow. She also did Rituximab and had her first infusion 6 weeks ago. She developed serum sickness so she cannot do this as well. We will find out on Thursday if it is working for her since two weeks ago, she had a jump in her counts-up to 52. She had also just finished a high dose of Prednisone so we will see if it was the Prednisone working or the Rituxan. I'm praying it's the Rituxan!! If her counts drop below 20, then we will start considering a splenectomy. And I will feel better with this decision knowing that we have tried most of what she can have.