Thrombocytopenic Purpura Support Group

I've had ITP for A LONG time...since I was 15. I am now 41...I have had it all. Splenectomy, Prednisone, Vinchristine, IVIG< Transfusions....so so many things. 5 Bone marrow biopsy's. But I recently started a clinical trial, and it is in the beginning stages, but for me, it has been wonderful. I go once a week. For the first time in, so long I can't remember, I don't have to carry tissue around with me for fear of a nosebleed!

Being that you are on the other side of splenectomy than I am have you tried Rituxan. Also, my fear is what you are experiencing. In light of my decision not to have the splenectomy I have MS on top of it.

I had one dose of Rituxan, It didn't help me. I also had a reaction to it!! My splenectomy was not succesful. I was told when I had it, that there was an 80% chance that it would help, but it didn't......I was back in the hospital less than 2 weeks later, with 2,000 platelets. I know it has worked for some people....I am just not one of them!!!
I don't know anything about MS, so I am not sure what ITP treatments would work. I just have to sing praises for the treatment I am on right now. I go to the doctor every Tuesday...and yesterday my platelet count was 489,000....thats outragous...and it has stayed in the 400 thousands for 3 months. I want this medication to be approved by the FDA, so everyone has the chance that I do....to get better WITHOUT prednisone.

I have had ITP for around 10 years. My counts rarely get down very low and have only been 60 at the lowest. Usually, I hover around 100 and have occassionally even been normal.

I actually quit going to my hemotologist and just go to my family doc when I notice increased bruising.

Well, that's a good thing emsstacey. Do you get regular blood tests for ur counts? Just curious.

I do not think that ITP can cause depression. It might be that you are tired of dealing with this disorder. MJ

I just went in for gallbladder surgery and my platelet count was 41. They would not do surgery without giving me some. So I did they got up to 150. I went into my doc 1 month later and they were back down to 79. They are wanting to do a bone marrow biopsy on me Wednesday. Has anyone had this done to them?

I have had 4 bone marrow biopsies.....I can tell you that they are not fun...they hurt, but the good news is...it's a relatively quick procedure, and usually its taken out of your hip bone, so you can't see it!!! If you have any questions...let me know

Bone marrow biopsies are not required to prove or disprove ITP. Although, they are used to prove and disprove it. A simple, manual platelet count via complete blood count or CPC should reveal the tell tail signs of ITP under a microscope. Some of those things are giant platelets (body's way of compensating for the lack of platelets) and a lack of platelets. It should reveal as to weather or not it really is ITP causing ur low platelet counts or something else - anotehr disease, meds, etc. A bone marrow aspiration or biopsy isn't necessary to find out weather or not u have ITP. Just make sure that who ever gives u a complete blood count test make sure it is done manually. That will provide ur doctor with much more accurate results on ur counts and ur blood. Hope that helps.

To correct this in my previous post. The blood test is called a CBC (complete blood count). Sorry about the typo.