Treatment for ITP after splenectomy

So I just got a splenectomy last March (3 months ago) for treatment of my ITP. After the surgery my counts went up to 300k and stayed up until about 2 weeks ago. My count dropped to 11k and I scheduled an appointment with my doctor for the following week. When I went in I got my blood drawn and miraculously my count went up to 200k (in a week.. crazy right?). Anyhow it was a relief and my doctors and I were very happy.

The point of this topic is that I am wondering what the treatment would have been if my counts wouldn't have gone up in that week and were lower. I ask this because before I left my doctor said she was happy about my counts and was happy we didn't have to go through the hard conversation about alternative treatments like chemotherapy pills?? I asked her what she meant and she just said let's not talk about it because everything was fine.

I wish I would have pried a little more but at the time I thought it would be better maybe not to know.. but now I can't get it out of my head. Has anyone heard of chemotherapy for treatment of ITP? I just thought if my count was still bad I would go on prednisone which has always worked in the past. Is the treatment different if you don't have a spleen? What could it mean if it does come back without a spleen?

Hopefully it was just a little scare and everything will be fine but I need to be ready for what will happen if my counts do drop again.
Thanks! Personal stories would be great also!!

Hi khakie,
Most of the same treatments are available both before and after splenectomy, and some people find that certain ones work better or worse before or after - so it can be worth it to try them again even if they didn't work great when you had a spleen. The only treatment I know of that is not recommended after splenectomy is WinRho (or anti-D) - mainly because it is not believed to be effective without a spleen, not because of any danger. Another consideration is immune suppression - not having a spleen compromises your immune system to some extent, and further supressing it with certian treatments can be additional risk. Another consideration is clotting - certain conditions like lupus can make you more prone to clots, as can splenectomy, so I think you also have to consider clotting risks with treatments.

As far as I know prednisone is totally available as a treatment option regardless of spleen or no spleen.
Let's hope it's just an academic question for you - Erica

True chemo is rarely used for ITP, and it's not in the form of pills. Strong immunosuppressants can be used such as CellCept or Imuran, but I wouldn't go there if Prednisone works and you can tolerate it. I'd guess she was talking about those. Cytoxin is one of the chemo's used for ITP and as far as I know, it's an infusion. You wouldn't need to go that far if other treatments work, it's definitely a last resort. It can have permanent side effects such as neuropathy.

Rituxan is another treatment that is sometimes incorrectly referred to as 'chemo'. It's immunotherapy, not chemotherapy, and is also an infusion.

Basically, I have no idea what she would have been talking about, but as Erica said, all treatments except Win-Rho are available to you.

Thanks guys! Ya I had no idea what she was talking about either ha ha it was a little weird. I was just worried maybe she was just talking about a last resort or something. Thanks again for your info!

I had a splenectomy for a different blood disorder 12 years ago. I developed ITP a few years after that. With a splenectomy you can use all of the same treatments, prednisone, IVIG, Rituxan, NPlate. There is only one you can't use with a splenectomy, I forget the name, something like Winro.

My doctor and I were having a general discusssion about treatment options available for ITP. She mentioned vincristine which she said some physicians use. She said it was a cancer drug so she did not like to use it for ITP unless nothing else worked. It is a pill I think. Maybe that is what your doctor was talking about.

Oh yeah, I forgot about Vincristine. It's also an infusion. That is the one that can cause neuropathy, not Cytoxin. I don't think I'd ever consider that one, especially without a spleen.

Hi
No need to worry about chemo pills and your doc shouldn't have referred to them as loosely as she did - even if to gradually get you used to the idea - it still isn't fair on you

Dont worry. I had splenectomy back in 1994. And have had ITP 8 times in the last 16 years. In the past the consultant put me on prednisolone and followed it up with IVIG that usually seem to take 5 nights. 5 bottles a night. Over last few years he retired and have a new consultant and I had a platelet drop at christmas. I wanted to be out for a new year holiday and whilst they talked about IVIG I never saw it - thankfully because wouldn't have had time. But suffered ever since because doc thinks am responsive to prednisolone alone. In a way I am but my platelets dropped in may and the last few weeks been a little bit of a rollacoaster ride though partly my own fault as have an appointment tomorrow and after reading everything on here. I decided that since am not actually bleeding - even though I been told to ring up when I see bruises. I have hung on. I may be a bit in trouble tomorrow afternoon. Because I banged my ankle as one does on wednesday and have not nearly as big a bruise on xmas day. but definately sightly and this morning after church at home I banged my arm on the towel rail and that is definately there. So depending on platelet level - I don't think he would tell me off as such.... but he wouldn't be happy if he sees what I can see and not reported....

I never ever know when its in between. Though the bleeding sign is a bit false because bruises is bleeding. Bruises is bleeding underneath the skin. And yes I should go if it big i suppose though I don't think am heamophiliac. am sure its stilll ITP and that is that. I presume that a health knock on ones limb doesn't cause the platelets to drop? Just that one has a predominate bruise because of the platelet drop.

anyways hope you feel less panicky about the silly consultant you have and if you were in uk I would have encouraged you to seek help in making sure she got a bit of a 'ticking off' in scaring you they way she did. Not that is how she will think of it - but that is part of their problem. Chemo pills don't scare them as they are prescribing them all the time. They don't always realise the effect even loosely mentioning them to someone especially when there is no need for that route at this stage.

NOw you all going to tell me IVIG is chemo:)

No, IVIG is not chemo. I won't be telling you that.

I get some things right then phew...


though no idea what is going through new consultants mind because he don't seem to want to give it though only last month he found through me telling him that I don't have spleen. Bang goes that option for him. I think I have spent about one may be two months of this year without being on steroid. How long can he just keep giving me them in reality. They do go up but IVIG makes them stay up longer and when I admitted IVIG is more expensive he kind of dismissed that somewhat

so what is the protocal in England now if anyone knows. why is he hanging back and determind that the steroids work enough on their own?