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.

Additionally, most surgeons in general will not perform surgeory until the platelet count is above at least 50. Going beyond that alot of those surgeons won't do surgeory until ur platelet count is above 70. FYI.

My surgeon would not do my gallbladder surgery until they were over 100. When I went into the hospital in December with a gallbladder attack they were 41. They had to give me some platelets to be able to do surgery. 1 month after surgery they were back down to 79. I will have it rechecked tommorrow when I go have the bone marrow biopsy out of my hip. I also suffer from MS. I was dx about 6 years ago and they have taken me off all my meds until the biopsy. My neurologist says that is ok but I need to go back on next week.

Wow. U have MS too. Holy cow. U are the first man I have ever come into contact with that had both diseases. Nice to know ya. Do u realize just how many men on the planet that suffer from both of these diseases naturally. Wow. I know what it is to have to deal with both. Its not easy feat. That I can tell ya, but u already know that. U are correct about some surgeons. 70 is usually the standard that most surgeons prefer to have as a minimum platelet count. However, because they are in the business to make money and not get sued, they prefer to have it higher so as to cover their bases. Don't let them fool ya with that. 70 or better is adequate enough for clotting purposes when it comes to surgeory.

I am a 38 year old Female with MS and possible thrombocy.... Just had the bone marrow test yesterday and am waiting for the results...

Oh Forgot.....

Had my platlets checked yesterday...

2 1/2 weeks ago=79,000
yesterday= 57,000

NOT GOOD