Newly Diagnosed, Seeking Answers

Hello,
I am newly diagnosed with ITP and seeking answers about my bone marrow biopsy. I was told that I definitely have ITP but I was also told that my bone marrow is producing immature platelets. I was under the impression that ITP doesn't affect the bone marrow and that if you have ITP you should have normal bone marrow. The doctors are telling me that this is a normal for me to have the immature platelets in my bone marrow with the diagnosis of ITP. I am in China so am worried that there is a miscommunication between the doctors and me. I am concerned that I could have leukemia or something more serious and that I am being misdiagnosed. Can anyone tell me if the immature platelets in the bone marrow is normal for ITP or if that indicates a more serious issue? Thank you.

Your doctor is correct. Someone else may be able to tell you better than me - but... Our platelets are being destroyed and our body making new [immature] ones - new ones are large and sticky. Seeing that your body knows you need more platelets they are cranking them out and so you [an ITPer] has lots of new large sticky ones. I was diagnosed in 1989, put in the hospital with a count of 11k and dropping, bone marrow biopsy done and no cancer.

I don't know if you looked at the other thread you posted - in it I told you that I was the opposite of you, diagnosed shortly before moving to Tokyo [then Hong Kong] and was on 60mg of prednisone when we moved. That was 1989 and I've continued to live a full, happy, crazy life. Of course it is frightening, heck we never gave platelets a thought until diagnosed - but it seems from what you have said that you are getting good care.

We're here for you!

Hello.
Thank you so much for responding to both of my threads. It's reassuring to hear about your experiences, and that you have been able to live a great life despite ITP. I've just been worrying a lot that the doctors aren't giving me the proper diagnosis since there is a language barrier. So it is definitely normal for the bone marrow to produce immature platelets with ITP? Did you find that it was difficult coping with ITP in a foreign country? I am concerned about the affect of the air and water pollution on my health. I've been on steroids for three days and haven't seen an increase in platelets yet. Maybe it needs more time? I also have had too high of white blood cell counts since being on the steroids. For this reason, I've been urged to take the week off of work to give my body time to rest and adapt to the prednisone. Your responses really mean a lot to me. I've been spiraling into anxiety and fear and need to make a conscious effort to think more positively. It's hard not to be afraid that it's something worse or it will develop into something worse. Thank you for listening.

Maggie - 'Immature' means 'reticulated' and they both mean 'new'. It's normal to have new platelets showing up. That's usually a good thing.

Steroids will cause the white count to go up. That's normal also.

I understand worrying about the diagnosis, but usually if the only symptom is low platelets, it is ITP. If you had other cells that were too low or too high, or if you had fevers, weight loss, diarrhea, lumps, etc..., then they would look for other causes. Don't worry about the white count while you're on Prednisone. It's happened to most of us.

Hi Maggie, if you feel up to it, I recommend considering going to work. Work has been awesome for me since my son's diagnosis. I haven't been as productive as I could be, but the distraction is protecting me from becoming a full-time platelet researcher. It sounds like you enjoy your job, and if that's the case, you may want to just take a day off here and there or have short days. (If you don't enjoy it, then take the note from the doctor and go do something you love to do!)

Keeping my life as normal as possible is what helped me to get through the hard times with ITP. I didn't want to alarm my kids, so I just kept doing everything that I always did and pretended it didn't exist (as much as possible). I trusted the diagnosis and didn't really fear it. The side effects of the meds were worse than the ITP itself.

You don't have to make any major life-style changes just yet.

i would leave china and go back home and get it sorted out.
but that's just me.

I'd love to get it sorted out too, where do I sign up?

John, just seeing you're a fellow Canuck!! That explains it, I think. Ivig costs $5,000 a pop here in the US. Every office visit has a $15-20 copay fee. We have an annual out-of-pocket limit of $5,000, after which our insurance covers everything but I'm told that's a generous plan and our out-of-pocket is still a decent chunk of change (especially compared to socialized health care in most countries around the world).

Maggie what it comes down to is - you have to do what you think is best for you, period! Honestly since we moved to Tokyo first I really didn't have trouble coping since English was spoken and believe it or not the hematologist at the hospital I was assigned to actually knew my US hematologist, talk about a small world. But Hong Kong was a bit different as any drop in count she would want to take out my spleen which I refused. It is different for sure - it is a real experience, not only were we/are you experiencing a different culture but a different medical system. I can only tell you I am just so thankful I didn't say "nope, can't move overseas because of my ITP and being on prednisone"!

In Tokyo we drank water from the tap - in Hong Kong it was bottled water. Can't recall how long it took for my count to go up after starting prednisone, sorry. What happened with me is they thought they could get my count up and me off of prednisone before we moved and that backfired when they decreased my prednisone too much.

Yes it is normal to have lots of immature platelets - your body is doing its job replacing the ones being destroyed. They are large and they are sticky. Anxiety and being scared is normal - this is happening to you!!

What was your platelet count? What dose of prednisone are you on?

maria3132 actually if i was in the states i would get Promacta for free from the drug company. because of my income. in canada they only discount a small amount . there are advantages and disadvantages i guess in every country.

for your son.... take him to somebody who specializes in ITP even if that doctor is in another state -if you can. i switched hemo's to someone that specializes in ITP( lucky for me he was in my province) and the move saved me a lot of headaches.

Maggie- sorry to hijack the thread momentarily!

John, that's absolutely true, there are trade-offs. We are paying a lot annually for healthcare (I'd guess, all in, near $10,000), but the quality of care is excellent whether you've stubbed a toe or need an MRI, whereas I felt in Canada you only get 'excellent' with very serious issues, otherwise you get 'good enough.' That's been my experience anyway. Obviously, we are lucky enough to be able to afford this level of healthcare here, but many are not and it's deeply unfair.

Are you anywhere near Toronto? My parents are in TO and I'm trying to figure out what we would do if we were visiting and my son's counts were to drop. I see that the Sick Kids website has lots of good information on ITP. A good friend of mine was a pediatric nurse at CHEO in Ottawa for years, so I'll also be asking her if she can recommend someone. As for my son, right now he's being seen by a team of hematologists at one of the top 5 children's hospitals in the US, so we're confident we're getting good care. But as a researcher, I gotta keep researching.

In my Province of New Brunswick, I get better care than "good enough". But, NB is a lot smaller than Ontario, so that may be the difference. I didn't have to pay for my Rituxan and never tried Promacta so I don't know if I would have had to pay for it. If I did, chances are that I wouldn't be able to afford it.

CindyL, hello! That could well be. I certainly can't claim that my experience and perception are generalizable at all, let alone to the entire two countries.

I've been very lucky in all my treatments. We have a Provincial election coming up this month, and I'm afraid of who might get in and what they're liable to cut.

Honestly, the type of care you get varies from doctor to doctor. Some are calm with low counts, some panic the patient, some push steroids, some push splenectomy, some do the BMB right away, some do not.....it's the luck of the draw.

Maggie, have you given thought to what might have triggered ITP? Or, unknown right now?