Treatments

I have been on Prednisone since August with mixed results and want to know what other treatments anyone has tried and if they were good or bad as far as side effects. Brief history: platlet count of 2000 in February, platlet infusion did not work, gamma globbulin did not work, had splenectomy and count went up to 350,000 for 5 months then dropped to 12,000 in August. Count today was 68,000. Doctor wants to try something different next month if no improvement happens but I am scared of serious side effects. Can anyone help?

You've been through a lot of treatments in a short time, some of which may have been unnecessary. Platelet transfusions never 'work'; they should only be used if serious bleeding is occurring. Splenectomies are not performed much any more and are rarely done before a year of diagnosis (as you know, they don't always work). IVIG is usually temporary and is used as a rescue treatment; it does not cause remissions. Please clarify what you mean by 'work'? Some people are happy with higher counts short-term and some want higher counts long-term. Have your counts responded to any of them?

Prednisone is a first line treatment and most of us have endured months of it. Sometimes it works to keep counts up for a while but a lot of the time counts fall as one tapers. The side effects can be horrible....agreed!

The next treatment choices would be Rituxan, Decadron, or N-Plate or Promacta. Some doctors try CellCept or Imuran. N-Plate and Promacta have the highest success rates, but they are the newest meds and for insurance purposes, are usually saved for last. All of the drugs have potential side effects, some serious, some not so serious. Immunosuppression and blood clots are the main side effects that you'd have to watch out for, especially since you've had a splenectomy. Honestly, it's a shot in the dark. Many people base the decision on cost and what insurance will pay. You'd have to discuss the pros and cons with your doctor. Hopefully, he is familiar with all of the options.

Many people go by symptoms, not counts, and only treat when they have to. That is another option unless you have an active lifestyle.