Hi,
Has anyone had rituximab treatment on low platelets (<10) without steroids? I am on two short waves of dexametazone in addition to 2 out of 4 rituximab infusion weeks and now also given prednisolone in between dex waves as my platelets remain low. I was wondering if anyone had lasting rituximab effect without steroids added to the scheme.
Most people don't have steroids with rituximab. It can take a long time to work so don't get discouraged if you don't see higher counts straight away. Success rate with rituximab is something like 40%.
My specialist wants to put me on retuximab ,I was started on prednisone 50 mg daily but it affected my WBC and HGB adversely, I am currently on prednisone 25 mg every other day, I understand according to all medical information that retuximab may cause heart damage, I am currently a heart patient with 5 previous heart attacks & congestive heart failure, what has your experience been ? I currently have platelets in the low to mid 70's, but newly diagnosed, I was on a regimen of anti platelet medications up to about 1 1/2 years ago, (generic plavix ) as well as cholesterol and blood pressure meds.
Yes... Five years before I had gone for rituxam treatment. My platlets were on the normal range for 5 year since then. Now recently in June I got an infection and my platlets droped down. I took dexamathasone my platlets rised but droped again after stopping the medicne. Now currently I am on prednisolone. Dr are considering for rituxam again.
I have steroids and they stopped working, had rituxamab and it increased my platelets for about 8mth didnt take anything else at the same time. Platelets now dropoing under 50 so my hemo is going to start rituxamab again in the new year. X
Why would your doctor put you on rituxamab again when your platelets are 50. my platelets have ranged from 42 to 30 for 6 years without any treatment. Beware of doctors being anxious to treat unless your platelets drop below 30.
They quickly drop to less than 20 when they reach 50 as i have gyne problems too. X
OK, that makes sense then. ITP is a weird condition. We all have different experiences with it. I have a friend who is refractory and she travels all over the world with about 2,000 to 5,000 platelets.
Hi tinkerbelle77 ,is itp cause due to your gyne problem.
No just so happens to have that aswell. X
@karinsky... i was wondering about your friend with very low platelets.. is he/she haven't suffering in any kind of bleeding while travelling? My baby was diagnose with ITP last month now her platelets drop at 4,000 her Dr. Does not allow her to travel by plane going back to our native country because of of dangerous for cabin pressure that might cause internal bleeding especially in the brain and it makes me afraid too, so until now day by day we are praying and waiting to increase her platelets.
Regarding my friend, I am not aware of any bleeding while traveling, but with a baby, I wouldn't travel until her platelets are higher and out of the danger zone. Most children with ITP have spontaneous remission, so I think your baby will be fine. My hematologist had two episodes of ITP as a child and now, as an adult, he has been in remission for years. Blessings.
I was always given a dose of dex with each of my rituximab treatments. Have had it 3 times over 9 years now. First one full dose then 3 years later maintainence dose once a week for 4 weeks then again 3 years later. Always dex push then as well
Thank you! It seems my rituximab treatment didn't work though, even with dex... Will be moving to another one!
hi i start mine next tuesday,not looking forward to it
Hi
It is about 10 days since I finished my 4 doses of rituximab and my platelet today is 9k. It had gone upto 24 k but has dropped again. I have tried everything possible, IVIG, eltrombopag, dapsone, retux. Though steroids do keep my platelets at @ 15k, I do not want to continue them as a long term solution as I am also diabetic and they increase my sugar levels. I do not know what to do now as I seem to have run out of options.
Wait a bit, mine worked not immediately, my vague memory was it worked within a month. Hope it works for you! Have you tried MMF? It worked too for me. Also, is your doctor an ITP specialist? Even if so, maybe worth taking second opinion, e.g. from Dr Provan if you are in the UK?
Newly diagnosed with ITP low platelet 
Rituximab
Itp, platelets rising
