High pulse dexamethasone is losing its efficacy so my next emergency treatment is anti d immunoglobin.
Has anyone tried it, what are the side effects and has it worked for anyone? Tbh I'm so fed up with ITP even if it lasted a few weeks I would be over the moon. Steroids have really messed me up and the results only lasted a week before I was put on dex again.
Hi 123katylocke
I've been maintained on Rhophylac - Anti-D for over 3 years now, back with the consultant every 4 weeks and treatment is based on blood counts on the day.
Obviously our responses may not be the same, but keeping well hydrated before and after helps me.
Hope that helps
Owen
Thanks for your reply! Any significant side effects short term or long term?
I can only speak for my own experience and dosages.
I have headaches from immunoglobulin infusions, so try to stay hydrated, which helps. Possibly paracetamol once a day for a day or two if it's making me uncomfortable.
I am prescribed a pre-med of Cortisteroids and Piriton, so those have a short term affect for a couple of days.
I was diagnosed with ITP in 2000, and was treated (in the US) with WinRho Anti-D for 4 1/2 years, every 4-6 weeks, depending on my blood counts. I had no side effects, but had to have the infusion slowly. Eventually Anti-D lost its efficacy and I underwent a splenectomy in 2004.
Did the splenectomy work ?
Yes, I was in remission for 8 years, but gradually platelet counts dropped, until 2 years ago I started having under 20,000 whenever I got a virus. Have been on the ITP roller coaster since then, steroids (which didn't sustain platelet counts), and most recently a hospitalization with 2 IVIGs (which I didn't tolerate well) and a dexamethasone pulse of 4 days. That was 2 months ago and I'm still doing okay, platelets over 50 but falling...
Did the splenctomy help?
My daughter has had IVIG and whinrho. She had a good increase with longer success on whinrho but really bad side effects. The IVIG bumped up her plts to the other end of scary and we had to worry about all the same problems and then she dropped quicker. Everyone will respond differently and have different sode effects. Its very hard to say how you might respond.
Iv had all the treatments and the only one that has worked for any length of time is romoplastime. It does mean an injection every week at the local hospital. But my platelets are 145 at the moment. Its the most normal I've felt in the last 3 years.
I am wondering has anyone had to quit their job due to itp. I am currently employed in a job that I may be at risk of assault or injury. 
On romiplostin for 5 months. But it seems to work for a month and then count drops and needs increasing. Has anyone had similar experience?
Is cranberry juice safe to drink with ITP?
I would like to know from anyone else that has had a splenectomy, if they are more prone to getting ill. 
Platlets will not come up despite every possible treatment
