positive ana...Sandi and anyone with advice !

When I was first dx with ITP the Dr checked ANA. It was positive. I also have hypothyroid which is out of range and can cause positive ANA. I have not one symptom of Lupus at all. and when i say none I mean none. I feel fine except the stress from ITP. Dr wants me to see a rhuemy. I say I am not going until my thyroid is in range and until I have had ITP at least 6 months and if I have symptoms of Lupus. I know a positive ANA does not mean lupus. Do you guys think this is wise. I think we have to do what we think is best because sometimes Drs just do not know.

My hema. wants my spleen, which I am going to wait because it has only been 2 months since my platelets dropped and I was DX. He keeps saying "that is what is published in the journal of medicine as the best treatment " he is talking about splenectomy. He also will not do any of the other treatments says they have too many side effects and not enough research. I asked about Rituxan he said "if you get Lymphoma 10 yrs down the road and ask me if that caused it I could not answer" and he said he does not use any other treatment for ITP for those under 60yrs old, other than steroids, unless they have had a splenectomy that did not work. I think I need a new hema. What do you all think?

This is all crazy and all over the place I know. I just want to do what is best for me. I have taken prednisone once for 4 weeks and platelets came up to normal 220000 and stayed up for that 4 weeks. T plus 4 more. Then they dropped to 11000 so now they have me on Dexamethesone. which i know NOTHING about. I am on it for 4 days so far. Has anyone ever tried it?

I am sorry for so many questions but my dr just will not answer any or maybe he is just not saying anything I want to hear :laugh: but I believe there is more than he is telling me. I have read on hear till I have overload. My dr rebukes everything on here.

All I am asking is what you all think and if you have been through this with a DR?

Sincerely,
Shannon

Shannon:

Do you know what your ANA titer is? It's not enough to just know that it's 'positive', the numbers also matter. A person could have a low positive such as 1:80 and it wouldn't mean a thing. If the titer was 1:640, that would carry more weight toward a possible future autoimmune problem. This is something to consider when thinking about a splenectomy.

As for your doctor, I'd suggest getting another opinion. With so many available options these days, it's very odd that he would only seem to stick to two. You should have a hemo that you feel comfortable with and one who will work with you.

It wouldn't hurt to see a Rheumatologist to get a baseline of common Lupus labs. Not having symptoms is a very good thing though!

Dex is a pretty potent steroid and the side effects can be nasty, especially when you stop taking it. It can work very well, but sometimes counts drop pretty quickly after you stop using it. Maybe you will get lucky and have a good, lasting response. Many people here have used it and experiences vary. Let me know how it goes!

Shannon, I think you need a second opinion at the very least, if not a new doctor!