Hemolytic anemia to ITP...Evans Syndrome

So, I am 40. Otherwise a happy, healthy, active person. I take herbs, vitamins, work out and do acupuncture.I believe eastern and western medicine should get together and talk more :woohoo: what a concept!! So...here goes... In January 2009 I had a diagnosis of autoimmune hemolytic anemia. I felt horrible and had the bloodcounts to prove it. I think the lowest my hemoglobin went was 6. So,80 mg of Prednisone was given and of course I felt like a million bucks. Weaned down 60, 40, 20, 10 etc... after many months of this "weaning" process,hemoglobin up and down...October '09 Rituxan was give to me , I finished the week before Thanksgiving. My Hemoglobin stablized and I was feeling fine, no side effect at all. (they did have to give me benedryl and tylenol when I was receiving the treatment the first time from an itchy head) Thurs December 18th, when I went in for my regular CBC...they sent me straight to the hospital with a platelet count of 6,000. Platelet transfusion and IVIG for 3 days. Since then it has been a roller coaster. I was in again in April '10, November '10, and 28 days later, Dec '10. Each time it was during my period??? I don't show signs of bruising until I am at 1,000 or so. The last time I had a very, scary, heavy period...and I went in early for my CBC. Now my hematologist is thinking it has something to do with my hormones? Especially since I am on a higher dose of prednisone and it seems to be helping less?? Aside from wanting to remove my spleen, They are wanting to give me Lupron Depot to stop my cycle and see what happens. I stay optomistic and pray to God (because I know he has the answer) that they will find something to stop the roller coaster...please...anyone??? I am reaching out to you.

Hi, It sounds like you Dr may be considering the possibility of Cyclical Thrombocytopenia, which is related to hormones, and is treated differently to Idiopathic Thrombocytopenia. Idiopathic Thrombocytopenia is considered rare, Cyclical Thrombocytopenia is even more so.

This is something my Haematologist has been considering in regards to me also. However despite charting my counts in relation to my monthly cycle the link has not been proven definatively.

I was having very heavy periods also with counts 3, and my Dr recommended a Mirena, which has helped greatly. I am currently on the Extend Trial for Promacta/Eltrombopag, and during the past four years whilst on this drug, my platelet count has continued to ride the Rollercoster, you talk about - however for the past couple of months it has not been in the dangerzone, thankfully. Hold on to your faith, be brave, be strong...... and do not be afraid to ask questions.

If I can be of any further help just let me know.

Vanessa xx

Thank you for your response. I think I am headed for another relapse as we are speaking. The nose bleeds started yesterday. I am on 50/40 mg of prednisone at this time as well. It doesn't seem to be controling anything but the size of my face! Could you tell me what Mirena is?

Please see the link below for a description of the Mirena.

en.wikipedia.org/wiki/IUD_with_progestogen

I have had a Mirena for five years, and it has been very successful at controlling the heaviness of my periods. I still get the cramps and pre-menstrual symptoms, but is a huge relief not to have to cope with heavy periods.

Vanessa

I'm an adult with Evans Syndrome. We have a rather large support group going on Facebook . Our blog is located here . We are also in the process of bringing our main website back up (we were down because we got hacked), and when it's out there, you'll be able to hit us here . We are the Evans Syndrome Community Network. We consist of people all ages, from all over the world. If you need help, want to ask questions, or just want to lurk, feel free to join us.

~Peace~