Diagnosed in December

My name is John. I am a 48yo male, living in Florida....

During a routine checkup my Primary Doctor noticed my platelet counts on my bloodwork were extremely low.... 5k. He put me on a 15 day course of Prednesone. At the end of the 15 days, a new CBC showed a count of 3k. He got me into a Hemotologist. He re did blood work with their onsite lab, ran it several ways, looked at the platelets on a slide to confirm etc. He gave me an immediate IV of Solumedrol and re started a high dose of course of prednesone. I had Solumedrol IVs three times a week for several weeks. Did a Marrow Biopsy, MRIs, all sorts of blood work looking for everything. In a few weeks, my counts were running in the 15 to 18k range.

I then had four weekly treatments with Rituxan along with high doses of Prednesone. At times I have been on as much as 100mg of Prednesone a day.

After the four Rituxan IVs, my counts started to climb.... First into the 40-50k range and then in to the 95-110 range.

ALL of the bloodwork,Biopsies, and other testing came back normal aside from the low platelet counts.

By April my counts seemed to stabilize in the 95-110k range. So they started tapering me off the Prednesone slowly over about 5 weeks. The platelet counts held throughout the taper. Even when I was on 5mg every other day. So the first week in may they took me off the Pred. I was off the Pred one week and my counts dropped to about 80k. So they put me back on 5mg every other day. To see if a low dose would help hold them. The next week my counts were about 70k. So they upped the Prednesone.

Since May my Counts have been on a roller coaster. From a low of about 70k to about 100k. Currently back on 20mg of Prednesone a day. I will get a fluctuation of 25 to 30k while on the same does of Prednesone.


I have an appointment next Wednesday to discuss the next step. I am way past being fed up with the prednesone. I have, as I think most folks do, a bunch of side effects from it.

Hello Johnny - glad you found us! It seems as though Prednisone isn't worth the trouble for you. some people respond well and others don't. You did have a response, but it doesn't seem good enough to continue with that treatment. Five weeks isn't really a slow taper, sometimes the taper takes months.

It's normal for counts to jump around a bit and staying between 70 to 100 is good. Normal counts are not needed, safe counts are. Safe counts are considered to be anything above 20 to 30, as long as symptoms are not present. Of course the goal is to maintain counts though without having to treat.

Rituxan can take 4 to 12 weeks to kick in and even then, some people only get a partial response. A partial is fine as long as there are no symptoms.

If you get to a point where you don't feel that Prednisone is the right treatment for you, it's okay to speak up and tell your doctor. There are other options and Prednisone is not good long-term for maintaining counts.