Diagnosed in May No response to Prednisone or IVIG

Hello,

I am a 32 year old woman. I had a low platelet count December 28, 2015 of 71 which was missed by my OB/GYN. She told me my blood work was normal. It was only after I requested my records after being sent to the ER that I saw that this was starting back then.

I was sent to the ER on April 29 with a count of 18 after my primary care doctor ran a CBC because of bruising and petechial rash. Since then I have been on prednisone between 60 mg and 40 mg per day. Initially after 4 days of 60 mg of prednisone I had an increase in my platelet count to 40 and my primary care doctor quickly tapered me to 40mg of prednisone after which my platelets dropped down to 20 where they have been hovering around ever since.

I went back up to 60 mg of prednisone per day for a few weeks with no increase in my platelet count so the hematologist tapered the dose to 40 mg per day. Last week I had IVIG and this morning my platelet count is 12.



Has anyone else had the experience of having ITP and having no response to prednisone and IVIG?

I am also anemic HEMATOCRIT 26.4 and HEMOGLOBIN 9.2. In December I was not anemic at all HEMATOCRIT 39.5 and HEMOGLOBIN 13.1. Also my iron tests were all normal. In anyone's experience are six months of blood loss from heavy periods enough to explain this anemia? I have also had bloody mucus when I blow my nose, but no active nose bleeds.

My hematologist is confident that it is ITP, but I pushed him a little about how he knows it is not bone marrow failure and he is going to do a bone marrow biopsy tomorrow. I read that being on prednisone can effect the results of the bone marrow biopsy. Has anyone run into this problem?

Thank you very much for your time!

Hello. Glad you found us.

Some doctors don't worry about a count of 71, even though it is below normal. Symptoms are more important than the count.

Yes, you can become anemic from heavy periods for six months.

There are people who do not respond to steroids or IVIG. There are other options that we can help you with if you're ready to move on to other treatments.

Good luck with the BMB. I didn't think it was as bad as it sounded. Why are you worried about bone marrow failure? You're young!

I'm glad I found you, too.

I'm nervous about bone marrow failure due to the anemia, but you eased my mind by telling be that I can be anemic from six months of heavy periods. Also, in December my white blood cells were 7 and now they are 4.6/3.8 so low end of normal. Also, I studied chemistry for 9 years so I have the history of chemical exposure.

Thanks for your help!

Try not to worry about or analyze CBC's too much. Mine are never normal, and you have to look at the trend rather than any specific day. Things can fall out of the normal range for many reasons, but that doesn't mean that anything is significantly wrong. We only notice these things because we are getting frequent CBC's. If we weren't, we'd never even know. If the numbers are serious enough, your doctor should tell you.

My doctor sent me a letter a few weeks ago that my white count was too high and to get a recount in a few weeks. I'm not worried; I've been through this before.

BMB was painless! Just waiting for results now. Doctor said I should get them Friday.

I know you said I shouldn't analyze CBCs too much, but the scientist in me just can't help it...

I am trying to figure out if my anemia can be explained by my heavy periods. In December my hematocrit was 39.5 and now it is 26.4. In between I had six periods. I found that 3% points on the hematocrit corresponds to a unit of blood loss. So that would be like losing about 0.7 units of blood (about 325 mL) each period and having no recovery of RBCs in between. Does that sound plausible to you? Can anemia also be explained by bruising?

Thank you!

Both anemia and ITP can cause bruising. Is your doctor worried about anemia? Is he treating you for it?

So the doctor kind of got back to me on the BMB results...I don't have aplastic anemia, and he said the red and white production look normal, but that there is the possibility of an abnormal lymphocyte population and I need to go back for another blood draw on Monday so they can do another test, I guess he didn't get any liquid from the BMB. He said something about the lymphocytes interfering with platelet production. From what I have read though a high Mean Platelet Volume (MPV) ( mine is 12.6 fL) corresponds with platelet destruction. Does anyone have experience with this?

Yes, elevated MPV is a sign of platelet destruction. Platelets are larger "at birth" and shrink with age. With platelet destruction, there is a shorter life expectancy for each platelet, so the platelet population tends to be younger, and therefore larger.

Every lab has its own normal range, and MPV is often not calculated when platelet counts are very low. My wife's latest MPV was 14.3 with a platelet count of 67, with a normal range of 9.4 - 12.3. Your MPV would only be slightly elevated by her lab.

Production is often affected with ITP.

www.bloodjournal.org/content/117/21/5723?sso-checked=true

Went to Doctor today - said that he saw a "few" lymphocytes in bone marrow, but that could be normal. Waiting until Wednesday afternoon now for results that will tell us if I have an abnormal lymphocyte population. He is concerned about the anemia right now Hematocrit 26 and hemoglobin 9.2 and my white blood cell count is a little low at 3.8. Also my neutrophil count is a little low at 1.29. He also said I have increasing macrocytosis. Does anyone have experience with numbers like these and been diagnosed with ITP at the end of it all?

If your numbers are not low due to bleeding or medication, Evans Syndrome could be a possibility. That is a diagnosis which includes all cells.

Found out today that it is not cancer so I am relieved about that. But now the doctor is talking about the fact that my bone marrow has only 30% cellularity which is low for my age and is talking about how I may be transitioning to aplastic anemia. He is sending me to a bone marrow failure specialist. Anyone have any insight into this? Thanks again!

No, sorry, that is beyond our expertise. Hopefully, he is just being cautious. Let us know how it goes.

I am hopeful that he is being cautious too...I am holding on to my elevated MPV. In aplastic anemia the MPV decreases...

If it helps any, I've had doctors send me to specialists because of strange test results. Both times, it turned out to be nothing.

Sandi previously mentioned Evans Syndrome, which is autoimmune like ITP, but can affect platelets, red blood cells and sometimes neutrophils as well. You mentioned macrocytosis (elevated mean corpuscular volume, MCV) which is consistent with macrocytic anemia. Evans Syndrome is one cause of macrocytic anemia.