Everything Is Okay For Now

I went to my new Hemo yesterday and things were good. My count was 55. I took 10 mg last week and then 3 days of 5 mg. I haven't taken prednisone since last Saturday because of side effects. I am not suggesting everyone do this ... we are all different with our counts so don't doctor yourself like I did.

I know my count will drop in weeks or a month but hoping it will be in my normal range of 30-40. My new Hemo was very nice and he seemed concerned in helping. I go back in a month for blood work to see what my count is. He is doing another ANA test ... I have had 2 within 4 years apart and they were negative. He did a protein test and not sure what it was for. Does anyone know why a serum protein test would have anything to do with ITP? Could he possibly know something that would cause ITP with protein test?

It is frustration to not know why some of us are idiopathic and do not know the reason why. It has been 11 years for me not knowing.

Charlotte;

Most people don't know the reason. There really isn't one. The body produces antibodies against platelets and that's that.

I hope your counts stabilize.

Thanks Sandi. I will know in few weeks but in meantime am looking daily for petechias and so far I have none. My Hemo said to call him if I get any and we will go from there.

Here is some info about the serum protein. I don't know why he would have run it...it doesn't seem to have anything to do with ITP.

www.webmd.com/a-to-z-guides/total-serum-protein

I have been doing research about protein testing with thrombocytopenia and came across the Autoimmune lymphoproliferative syndrome (ALPS). I was told recently by my MD that my Vit B12 levels were high. I take Vit 12 supplements so have stopped taking them. I also have protein and blood in my urine which is another sign of ALPS and I do get odd rashes from time to time.

The preliminary test is for an elevated protein blood testing.

It causes leukemia and lymphoma cancers.

I guess I will know the results of a protein test (if this is what I am being tested for) when I return in November.

I returned to my Hemo for a follow up and my platelets are now 76 without treatment. They were 55 a month ago after taking prednisone for a few days so I thought they would drop as they normally did in the past. I asked my Hemo why and he said some people will go into remission and I asked if maybe I could be but he said no because I have it to long. He didn't have an answer but I am wondering why they are rising instead of falling again. I have had ITP for over 12 years.

He ran a CBC, blood chemistry test, ANA, Protein Electrophoresis and Sed Rate test. ANA was negative again Sed rate was normal but Protein Electrophoresis showed Alpha 1 globulin being a little high 0.39 (normal range being 0.21-0.35) He did not go over theses test with me. I got a copy of all blood work as leaving the office.

I did some research and the protein electrophoresis test is to check for certain diseases. Are there diseases that cause ITP?

Does anyone know why my platelet count would rise without treatment since they is no chance I could go in remission?

Platelet counts rise and fall depending on antibody production. If your body is producing less anti-platelet antibodies, your counts will rise. Antibodies come and go and sometimes there is no rhyme or reason to it. I don't know why he would tell you that you can't go into remission. Anyone can, at any time. It doesn't matter how long you've had ITP.

Thanks again Sandi you have helped me tremendously and I am so grateful for your knowledge.

I will have another blood test done by my PCP in a week or so and see what my counts are. If they continue to rise then I may be in remission.... crossing fingers and saying a prayer.

When I told him about taking Omega3 and having to take the prednisone he said Omega 3 has nothing to do with platelets. I told him Omega3 inhibits blood clotting and he said I read too much.

I noticed on my test result that my Hemo range for platelets are 174-390 and at the hospital lab their range is 140-415. So my question would be if Hemo range is higher does that mean my platelets are really at 76 or lower since the level is higher? Or does it make a difference if ranges are higher?

No, the lab reference range doesn't have anything to do with what your count is. However, the count can vary some at different labs depending on how the analyzer is calibrated. I wouldn't think it would be a big difference though.

Keep reading. As long as you are looking at credible sites, you are free to learn whatever you like.

Omega 3 very much affects platelets as I found out! And its important information for anyone with ITP. Read read read- you have to be informed when you have ITP.

My counts were lower around 30K when I took children's dose Omega 3 for several days. I got bruises all over my arms and legs. As soon as I quit the Omega 3, the bruises went away. Omega 3 prevented the platelets from working properly- that taught me a lesson. With my low counts, I need my platelets to be in top form!