ITP and Splenectomy

I was diagnosed with ITP about four years ago and neither Rituxan nor steroids of any type worked for me. The only thing that does seem to work for a week or so is Ivig and sadly that isn't permanent. My doctors suggest that I should get a splenectomy pretty soon because they aren't sure how much longer the Ivig will work. I have tested ANA positive but I've been to a Rheumatologist twice and he thinks that I don't have Lupus but I am scared that the splenectomy won't work and I read someone say that they held onto their spleen and eight years later were diagnosed with Lupus so is that a possibility? If it is then the splenectomy would not work since I have heard it doesn't work in Lupus patients. I just really don't know whether to hold onto my spleen or get a splenectomy and get it over with.

P:

I am the one you are talking about. I did have ITP for 8 years before I was diagnosed with Lupus. All tests for Lupus were good until I had an elevated ANA two years before I actually got the Lupus diagnosis. So yes, it's very possible. Lupus can take a long time to develop and cannot be ruled out for that reason. A doctor can say "you don't have Lupus right now", but he can not or should never say "you will never have it", especially for people who have several criteria. There are many factors that go into the diagnosis.

Now, having said that, I also have to say that having a positive ANA does not mean you will definitely develop Lupus. A lot also depends on the actual titer of the ANA. If you had an ANA of 1:80, that would be mildly positive and probably means nothing. If you had an ANA of 1:620, that would carry more weight toward the possibility of an autoimmune disorder such as Lupus. Other test results also mean a lot - Anti-dsDNA, ANti-Sm, Anti-Ro, C3, C4, SED rate, Antiphospholipid Antibodies, etc. Having a few of those, along with typical Lupus symptoms, would make a probable diagnosis.

In a person who is genetically predisposed to Lupus, all it would take is the right trigger to start the ball rolling. Triggers for Lupus can include: UV lights (too much sun, tanning beds), an illness, Sulfa antibiotics, too much stress, etc. ITP can be a first symptom of Lupus.

As for the splenectomy: it can work for people with Lupus. But the problem is that a good percentage of people with Lupus and ITP also have Antiphospholipid Antibodies which can cause blood clots, even with low platelets. Having a splenectomy also puts a person at additional risk for blood clots. I have had those antibodies off and on and take aspirin daily to lower the risk. I'd much rather deal with low platelets than deal with clots, or worse, have to juggle both of them at the same time. There are some people with ITP that are also on blood thinners such as Coumadin. That can be a scary situation. I am describing a worse case scenario here, but I never thought I'd end up in that category when my doctors discussed splenectomy with me years ago. I am thankful every day that I said 'No". However, I could treat with steroids if I had to and was very responsive to that. You are having a tougher time in that aspect.

The only suggestion I have is this - have you discussed the TPO's with your doctors? Many people are having success with Promacta or N-Plate. They are maintenance drugs, but work very well for quite a few people here. You can read many stories on the Forum about that. How low do your counts go? At what count do you have symptoms? Those are two other things to take into consideration.

As Sandi said, there are a few other options out there besides Rituxan, steroids ... and yanking the spleen.
Why are many doctors always so keen on removing that poor innocent organ?
"Alas, poor spleen! I knew him well."

Promacta has been working well for me for a year and a half now. Lots of folks have good fortune with Nplate as well.
There are also a few immune suppressants which work for many folk. Cellcept worked for me for awhile, then Cyclosporine. Both were effective keeping my counts above 20k. And generic Cyclosporine is inexpensive.
It usually won't hurt to try another medicine, before removing an organ. Especially if you have not yet tried either of the two TPO drugs created specifically to treat ITP.

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Sandi: I'm not really sure what exactly my ANA was all my doctor told me is I tested positive for it and in the long run I could develop Lupus. If I get my spleen taken out and then am cured from ITP is there still a possibility of getting Lupus? I'm not really sure if I have or not. There's just so much that they say could work but don't want to absolutely try it because the reactions could be pretty bad. I think we might have discussed the N-plate because it does sound familiar and maybe it was the one they said they couldn't do because I also have low iron but I'm not sure.

Weirdjack: So you got your spleen taken out and it didn't work for you? That's what I'm most scared of that it won't work and then I'll have made the mistake of getting my spleen removed. I'm also afraid of the diseases that I'll be more exposed to with my spleen taken out. Again about the N-plate I'm sure we discussed it but just can't remember exactly why my doctors ruled it out. I don't think I have ever heard of Cellcept and Cyclosporine. Could you please tell me what exactly they are?

Having a splenectomy does not cure ITP, it's a treatment that may or may not work. Having it done will not stop Lupus. Too bad you don't know what the titer was. Ask the doctor next time you see him. Or better yet, ask for copies of your labs.

I was diagnosed with ITP 7 years ago. We toyed with the Lupus, but there was never an official diagnosis. I was on prednisone for almost 6 years with okay results (counts around 80k) for the first couple years and then it stopped working in 2009. We tried WinRho, with no improvement, followed by Cellcept (same thing) and finally Rituxan. I even tried acupuncture and holistic treatments on a whim. Come to find out, I'm allergic to Rituxan and was admitted to the hospital with a count of 2k and serious hives (which apparently, at 2k, will also bruise you!) I defended my spleen so hard for 6 years but my hemo finally said we didn't really have any other options. It was removed in laparscopically (sp?) September 2009, and I have had great results with it. My counts have been around 300k since, and I was completely taken off prednisone. I am aware that it could come out of remission any day, but we are optimistic as it has held so long. I am fortunate to not have had any major problems with infection afterwards, although I try to be very careful about being in contact with sick people. The only notable change is that I have been very susceptible to urinary tract infections, but have only had to seek medical care twice in the last year.

To sum up my wordy response, I agree with Sandi and Jack. There is a large risk it will not work. I would definitely get copies of ALL your lab work, and maybe even see a second opinion. There are so many things to try, and new treatments are coming out all the time. I would NOT suggest leaping to rip out your spleen. I know it worked well for me, but I tried many things before that. Explore all your options before you try something so permanent.

Weirdjack: So you got your spleen taken out and it didn't work for you?

Nope, I still have my spleen. It's been with me these past 58 years and I've kind of grown attached to it. I'll keep mine.
I have not seen enough evidence of a decent success rate for a splenectomy to warrant getting one. Especially around my age. 50%-60% is not a decent success rate to me at all. I view that as 40%-50% of them failed.
And to answer your other question; Cyclosporine and Cellcept are used as immune system suppressants to treat ITP. I mentioned them because they are some of the many alternatives to yanking the spleen.
I prefer Promacta as a treatment over anything I've tried so far.

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