ITP diagnosis

I have had low platelet counts for over two years. They never seem to go about 70. Recently they are running between 40 to 45 for the past few months. I was referred to a hematologist over a year ago and after numerous test and a bone marrow biopsy which was normal I was told to watch and see what happens. Now that the platelets have dropped to 40 and below for the last few months I was told I needed a second opinion from another hematologist. After leaving her office I am now scared of what she told me. She made a diagnosis of ITP and because I am a severe diabetic she recommended that I have my spleen removed. I am unable to take steroids and cannot do IVIG. I was on IVIG at one point over four years ago and had a stroke after one of the infusions. Thankfully there were no deficits as a result of the stroke. I am allergic to Imuran which was tried before in order to get the platelet count to go up. Is removal of the spleen my only choice. I travel overseas a lot and the hematologist said I should not travel by air anymore until the problem is resolved. She seemed to think that the spleen has too great a risk of rupture at this point. I have had elevated liver functions as well but all liver test come back normal and the CT I had done shows no fatty liver disease of any problem just enlarged spleen.

Sorry for the long post but so many questions and not sure what my next step should be at this point. Thanks for any information.

BH:

I'm not liking that advice. Maybe a third opinion? I liked the first hemo better.

Is your spleen enlarged? If not, it's not going to rupture.

Yes, there are other choices for treatment. There are two newer drugs called N-Plate and Promacta. They stimulate platelet production. Most people have no side effects. When using either of these drugs, the goal is to maintain counts around 50k which is considered safe for daily living.

Do you know why you had a stroke after IVIG? The answer to that could help dictate treatment.

The CT scan did show an enlarged spleen.

They think the Ivig caused the problem and I was advised not to have anymore treatments. They never
gave an answer as to why they thought it was the IVIG

The spleen is typically not enlarged with ITP....maybe there is another reason? If it is large enough to rupture, you may not have much of a choice. I'd ask about the underlying cause of the enlarged spleen and go from there.

Did your counts get really high from IVIG?

The counts when on the IVIG did go up but not very high. They got to the low end of normal which was good for me. The hematologist and liver specialist both said they think it is ITP and the platelets are getting trapped in the spleen. Not sure if this is correct and considering getting a third opinion.

Platelets getting trapped in the spleen causing enlargement seems logical, but everything I've ever read contradicts that.

Physical examination should be normal aside from bleeding manifestations. Mild splenomegaly may be found in younger patients, but moderate or massive splenomegaly suggests an alternative cause. Constitutional symptoms, such as fever or weight loss, hepatomegaly, or lymphadenopathy might indicate underlying disorder such as HIV, systemic lupus erythematosus (SLE), or a lymphoproliferative disease.

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