Hi all, I think it has been a while since I posted last. I thought I would share my recent experiences with you all.
Over the last 2 to 3 years I had a steady drop in platelets, My GP was watching this with interest and last March 2014 he contacted me when my platelets dropped to 20, and asked if my Rheumatologist had contacted me. The answer was no. After a few days of desperately trying to contact her, my GP got a hold of the ward and they told him to stop interfering.
So over the next few months as my platelets yo-yoed between 50 and 20 the prednisone was yo-yoed
As some of you this is not a good cycle to get into when lupus is concerned.
Come May 2015 I was desperate and demanded a second opinion. I was swiftly seen by a hematologist and a new Rheumatologist. As my platelets were now around a base of 25 rather than 50.
After a few tests and need for dental work and a few minor procedures I was tried on IVIG, This had absolute no effect.
I had a bone marrow biopsy to rule out other things, but the Hematologist was certain it was ITP. (Immune Thrombocytopenia)
Early this year he was keen to try me on a high dose on steroids of 80mg for 3 weeks, I said I would do this on my terms and insists 2 check ups a week as been a high dose like that makes me extremely ill.
I was right, I ended up with a huge infection and my platelets dropping to under 10. It took another 2 weeks of Anti viral and Antibiotics to clear me up.
Because of that drop in platelets I was rushed through the system for a splenectomy. After 8 days in hospital and still no lift in platelets my specialist and surgeon both declared this unsuccessful. Since then I have had a few platelet infections and we are all still waiting for a response.
Has anyone had this same experience, and what was the next step they were put through?
Any ideas would be helpful for my follow up in a few weeks times.