Next treatment step

Good evening. I am 31 years old and I was recently diagnosed with ITP and for the past month and a half my platelets have not reached over a count of 50,000 unless I have a platelet transfusion which I needed to have to remove my gallbladder in January. I have been on steroids and recently completed IVIG with no success. So, I was wondering what was the next course of treatment people underwent to help with your ITP. It has really been a hard time for my husband and myself and now I am just scared that there would be no solution and my platelets are sitting in the 30 - 40,000 range. Any advice?

If you don't bleed at those counts then you have the option of not treating. If it were me that is what I would do. The newest treatments only aim for a count around 50 (50,000) which gives you an idea as to what is considered a good count. Most of us don't treat until under about 10 (10,000 that is).

The most recent guidelines are here...

bloodjournal.hematologylibrary.org/content/115/2/168.full

I agree with Ann. My hema will not treat if you're around 30k. So, if I were you, I won't treat or start thinking of treating unless I'm under 30k.

thank you for the advice. my hema is doing treatments at my level because strokes run in my family history and he doesnt want to take that chance. I see him again on tuesday and I shall see what he wants to do next. he said he may look at a splentectomy and that scares me xause I just had my gallbladder out taken in january.

Have you read about different treatments in the treatment section?
pdsa.org/treatments.html

How long ago were you diagnosed?

I have read the treatment section and my hema has already done the ivig and steroid treatments and theya have not done much for my platlet count.

so here is how I was diagnosed. I had been having gallbladder issues for the past year or so....well in january I went back to the er for the umpteenth time and the er doc brought up the issue on my platelets and how they were at a 37. so, after getting a bone marrow biopsy done and platlet transfuision in order to get my gallbladder taken out then they diagnosed me with thrombocytopenia until I was officially diagnosed with ITP two weeks ago. but my hema said that he had been looking at my past records of me going to the er and he said that my levels had just started to go down in the last 18 months so it has just been a confusing time for me and husband.

It is/was a confusing time for all of us - I was diagnosed shortly after we had come back home from finding an apartment in Tokyo so we could move there. Had nothing to do with Tokyo, but had to do with having had a gamma globulin injection the company required before we could go look for an apartment.

I remember my hematologist told me she never had a patient go into remission while on IVIg - this was in September 2002 when I crashed and needed some help, I refused prednisone and we decided on WinRho.

You are still new into your diagnosis. I wish you well and I hope your count will come up.

What types of strokes run in your family? There are different types of strokes hemorrhagic (bleeding). Or a stroke that is cause by a clot. The clotting factors in the human body do not just rely on the platelets they are only a piece of the puzzle!

You have been diagnosed for only 2 weeks does your doctor not know about spontaneous remission. Does he know ITP can be Acute (lasting under 6 months) or Chronic (longer than 6 months)

Your counts were slowly dropping for how long and no one did anything till it was time to take out your gallbladder? Now all of a sudden your doctor feels you must treat and remove your spleen?

Ever thought that maybe the drop in counts were triggered due to gallbladder trouble and that they could rise back up on their own after a while?

Does your doctor know anything about ITP? At your numbers unless your going to have surgery or have a high risk job the doctor shouldn't be treating.

Years ago I read a study that said having the spleen removed puts you at a higher risk of hypertension. ????????? If that is true wouldn't taking your spleen put you at higher risk for strokes?????

Having no spleen puts you at higher risk of clotting events. Having ITP puts us all at higher risk of clotting events. Put the two together and it does make you think hard before accepting a splenectomy.

I agree. Having ITP does place one at higher risk for clotting, ie DVT's, strokes, etc. The things that raise that risk are: having high counts, getting counts up too fast and splenectomy. There has been a lot of research to support that. You'd need to know the cause of the strokes that run in your family. High blood pressure? Blood clots?