Newly diagnosed

Hi, my husband has just been diagnosed with ITP and of course I have questions. He went into the hospital a couple of weeks ago with a count of 2? They did bone marrow, just got the results today and hemo doc said platelets appear to be normal. I asked if that meant no cancer and he said "for now"? Don was given 2 units of platelets, count went up to 20 but dropped the next day. They gave him 3 more, count went up only to drop again. They gave him IVIg in two sessions and his count went up to 48, then next day to 96. He's also anemic, RBC dropped overnight one night, had two units of blood. They did ct scan of stomach and spleen, normal, did a colonoscopy, normal. Sent him home after platelet count was 96. He went in for blood work two days after release, platelets dropped to 90. Went back in today, 5 days after last blood work, platelet dropped to 70. Was on 120mg Prednisone, doc doesn't like that high a dose, says it appears it isn't working anyway, is dropping him to 60mg, told him to come back on Thursday this week. Said there are lots of other treatments besides Prednisone, but didn't elaborate. Don's had lots of health problems, is a T4 para, also below knee amputee, I hate one more thing to complicate his life, but am grateful for a no cancer diagnosis. Can anyone give me ideas on what to expect and what treatment works when Prednisone doesn't? I appreciate forums such as this cause I usually lurk and learn lots. Thanks in advance.

1. Is it cancer? ITP is a diagnosis of exclusion, as there are several other conditions that have symptoms of low platelets. There are some bone marrow diseases that can progress to a form of leukemia (its fairly rare), so the doctor is probably covering his bases with his "for now".

2. If it's immune ITP either the immune system (spleen/liver/lymph) are distroying platelets or the bone marrow is not putting out enough. Platelet transfusions are a band-aid that only gets you through a crisis or emergency surgery and the drop in one day is really common if the immune system is distroying platelets.

3. Everyone responds to treatments differently. It appears your husband is trending to the most common response to IVIG which lasts around 2-3 weeks before needing a repeat infusion.

4. Treatments. There doesn't seem to be a great deal of consistency in the orders hemo's suggest them. In part, other conditions will wiegh in on sequencing. For example, since steroids raise blood sugars, they may not be the best treatment for a diabetic and a side effect of Winrho can be anemia, so it may not be the first line for someone who is already anemic. The information on the main site about all the convention treatments can be very helpful. Also see the PDSA announcements section of the forum, which has a link to an article from the Blood magazine with the revised international guidelines for treating which contains first and second line treatment protocols.

5. Once you've been at this for a while, you learn counts are just one tool, and not to freak out when they start dropping. We have people on the forum who consistently live with low counts and no symptoms. It's about learning what level is safe for you and your life style. Most of us don't treat until we're under 30K and others set the limit at 20K.