Emily,
Thanks for writing. The first thing I would tell you is not to panic. The second would be to not get a splenectomy (yet). The third would be to avoid WinRHo at all costs.
In the beginning ITP can feel like a death sentence, particularly if you've been healthy up to this point. Time and experience (like hanging out in a chemo room receiving IVIg when everyone else is getting chemo drugs) will demonstrate that it's not. It's for this reason that you might feel your doctor, a hema/onc isn't taking you super-seriously. It's because many of the rest of his patients, the oncology patients, are actively dying, and you're not. Remember that and keep it in perspective.
You've probably already gone through steroids and are looking at your next step, and it was at this point that my first Hema recommended spleen removal. That's when I asked a doctor neighbor to refer me to another Hema.
Here's what I can tell you- your spleen in an organ. It's not vestigial; it does something. And it's probably working perfectly, doing exactly what it's supposed to do. That isn't the normal circumstance under which organs are removed.
Spleens are removed because doctors don't know what else to do, and they know this works sometimes.
I think there are circumstances where the spleen must be removed, but I think in the majority of cases it's a lazy, dangerous and short-sighted solution.
NO MATTER WHAT you have to have an indium test performed before you even consider a splenectomy, for the reason I explain earlier in this thread. At least then you'll know if there's a chance it will work.
I don't know your situation, but if your platelets are at a sustainable level, say +25K, with treatment (and the treatment is tolerable) then you have time on your side. I would start making a graph of your platelet counts and begin doing some experiments to see if they rise or fall with different environmental factors (food, air quality, etc.), but only do one at a time and give it enough time for the results, if any, to be visible. It took me a couple of years to figure out that my trigger was a toxic HVAC system possibly combined with a wheat allergy. And I was damn lucky.
How you proceed depends on your outlook, time, and interest in solving your ITP, and that's assuming it's solvable. It may not be possible under any circumstances, or simply may not be with the time and resources you have, and you have to accept this up front.
I would say to address all of the low hanging fruit early- get tested for Celiac (with a biopsy!) and H.pylori (again, probably with a biopsy) to make sure the answer isn't right in front of you. I don't have celiac, but an allergist (the kind that sticks 135 needles in your back to test for different things) determined I do have a wheat allergy, so I dramatically cut my bread intake. Unless you actually have Celiac it may be enough to cut your bread intake and not go Gluten-Free crazy.
Be careful of every drug you agree to take- Rituxin can absolutely help in some cases, but you won't have a useful immune system for a year, and of course, it can kill you via allergic reaction.
WinRHo is a horror show in my opinion. It has an FDA black box warning that literally says it can kill you, and last I checked it had killed nine people. And if it doesn't kill you it can wreck organs via a particularly grotesque hemolytic reaction. Again, I was damn lucky.
There are only two ways medicine has to treat ITP- either by hobbling your immune system so that you don't kill your own platelets as efficiently, or by increasing your platelet production so that your counts stay ahead of the accelerated culling. The latter therapies are new, and I don't have any direct experience with them. While I understood that treatment options are limited, I hadn't gotten to the point where I was willing to try brand new drugs that didn't have a track record, particularly as some of the ones with a track record were a bit dodgy.
Finally, I'll say that a lot of the battle here is psychological, and perhaps intellectual. You have to overcome the feeling of fragility- you can't fight if you're hiding behind a rock. You also can't look at this emotionally- you have to look at it clinically, logically. Something caused this. That answer exists. And if I haven't demonstrated anything else in my process, it's that not only is the answer knowable, but that in at least some cases if that cause, that instigator, is discovered and removed, the problem will resolve. Good doctors will tell you this might be true, bad doctors will tell you that's it's not, that knowing why the snowball started rolling down the mountain doesn't make it stop. That's one theory. My experience presents an altogether different perspective.
Also, I don't know where you live, but unless you live in Boston, Baltimore, or New York, you're probably not being evaluated by the best doctors in the country. Consider making that trip.
So, do whatever you have to do to get the Indium test. I had heard they have it now at Hopkins, but I'm not 100% sure. They have it in London for $1000 (I have no idea why a Nuclear Medicine test only costs $1000, but that's it) and for me it was only a few thousand Skymiles away.
Feel free to keep in touch, and I'll give you the best input I can for whatever it's worth.
Best Regards,
KO
Topic Author
who thinks a good diet helps. I've had "some" improvement when I drink my green drink often and avoid junk food. Ironically, I met a woman from Chicago at the conference who told me she is doing the exact same thing! I was flabbergasted. We are both avoiding meds and well, barely hanging in there and doing so by drinking these darn drinks. My doc has told me if my count falls to 20 and certainly below, she will need to do IVIG. So....not absolutely certain, but I seem to be able to keep my count 30 and above by drinking my "green" drinks often. In the drink is: kale, spinach, apple and pineapple. The woman I met from Chicago, is doing the same thing drinking a very similar drink...primarily of kale and spinach. She doesn't like pineapple. She feels it is the spinach and kale that are helping her and therefore concentrates on those two ingredients. I was very surprised to meet someone almost mimicking my situation and regret I didn't get her contact info.