80 Year Old with refractory ITP

I am so pleased to find this board! My mom entered the hospital almost 10 weeks ago with a platelet count of 7000 and hemoglobin of 4. She had been getting weaker, but we thought she was fighting the flu and was losing energy due to the stress of moving from OH to GA. Turns out it was ITP and an active GI bleed from her ulcerative colitis.

She received 5 red blood transfusions and 7 platelet transfusions in her 12 days in the hospital and developed Congestive Heart Failure. She was also started on 60 mg of prednisone and had a course of IVIG. Fast forward through 2.5 weeks in rehab to gain back the strength she lost (she also came down with pneumonia on the hospital) she is at home receiving home health. Since leaving the hospital her hematologist has been checking her platelet count almost daily - we go to the doctor's office everyday during the week and the hospital on the weekend for CBC. Any time she is below 20,000, she gets a transfusion. She has had over 20 platelet transfusions.

She finished a 4 week course of rituxan 2 weeks ago and no response. Her doctor has lowered her threshhold to receive platelets to 15,000 so she doesn't become refractory to those. They were 13,000 today so yay, hang another bag of platelets!

She is starting Nplate tomorrow and I know I should be focused on the positive, but what if it doesn't work? I get the sense from her doctor that this is really the last option for her. At her age, with her other issues, our choices are limited.

Can you really go on getting transfusions 2-3 times/week indefinitely?

This is also exhausting and frustrating. I work full time, have 3 kids, and a husband who travels. Getting my mom to her appointments and transfusions has been so difficult. I am in danger of losing my job. I am juggling help from my in laws, friends, and church, but it isn't enough. I think I could manage better if I thought there were some light at the end of this tunnel, but every week is more of the same. If Nplate is going to work, when will we see results? Does she really need CBC 5-7 times/week?

I know I am not asking many questions, just happy to find a place to whine!

Karen

Karen,

Getting platelet transfusions for ITP is counterproductive. The body eats them as fast as they are given. Second, lowering the threshold for her to get platelets to 15K will MAKE her refractory, not prevent it. My MIL had MDS and Leukemia and yes, you can live getting platelets weekly (platelets typically last a week in non-ITP patients), but a person does risk becoming refractory (my MIL did). It really sounds like you need to find your mom a doctor that knows something about ITP.

Having 15-20K platelets is okay for most people and not an emergency need for platelets. It sounds like initially that she needed them for a bleed, but beyond that, if she truly has ITP it's not a good idea unless she's actively bleeding.

I'm sure others will chime in regarding the drug aspects.

patti

Hi Patti,
Thanks for your comments. I think the doctor's justification is that she does have bleeding when her numbers get low and he has been trying to keep her above 15000-20000 to prevent that. It does seem counter productive though. I will definitely look into other doctors though and see what our options are.
Karen

Karen:

ITP is a bit different for the elderly. They have weaker blood vessels and the risk of bleeding is greater than a younger ITP patient. Since she did have active bleeding, I think the blood transfusions are justified. However, yes, the risk exists that she may become refractory to them or begin to have reactions.

I think her doctor is managing this the best way he can which seems to be day to day. In a younger patient, that many CBC's would not be necessary, but I wouldn't second guess him in this instance.

I do not think this will go on forever. N-Plate may very well be the treatment that works, so there is a lot of hope here. I've seen this before in elderly patients....they are refractory and most of the time, something eventually does work. Hang in there. It IS going to get better.