No response

Hello been at a count of between 0-5 platelets for past 3 months and have tried every treatment I think apart from cheomo therapy which I believe is a last line of treatment? I've been fine blood blisters and petechie now and then but it seems to clear up after a few days ,Ive been to Spain and Poland in the past month on the plane so I can safely say its ok to fly no matter what the doctor says and I also went down water rides and roller coasters maybe not the best plan but I'm living as normal as possible any body know of any other treatment options ?tried all immunsuppresive drugs ,tpo drugs,rituximab,splenectomy

Have you tried N-Plate or Promacta? Just curious - could be an option if you haven't. Not sure I'd go with Cytoxan or Vincristine, but you don't seem anxious to do those.

I've tried both promatica no response and nplate worked for 6months before starting to fail it took about 3months before I reached the maximum dose and then no response so for about 9months I had normal counts now I'm below 5 all the time and I believe the only treatment I've not had is the full cheomo which my dr has mentioned recently and I think will want to start in the next week or so it's that or wait for a new drug or the small miracle of spontaneous remission

What drug is 'full chemo'? I haven't heard of a treatment called that.
Erica

Vincristine maybe. It's the only chemo drug I've heard of for ITP. I wouldn't do it myself because of the side effects. Many have neuropathy which is permanent and I would prefer to risk low counts than live with that.

I'm not 100%sure I think it's the same treatment as a lymphoma patient would get I've not really fully been told as the dr has been hoping for a response to something else before going down this route ,theyve said they would rather try and treat me than leave me with the low counts especially when I get petechie and blisters as often as I do ,but as I've said I feel fine I'm going to work ,the gym I've been on holiday etc so apart from participating in contact sports I'm living a good life but the worry is always there

Just be sure to research that before you jump into it. It probably is Vincristine which doesn't seem to work very often for ITP and as Ann said, can have permanent side effects.

I feel you. Last three weeks been through IVIG, N-Plate, steroids, platelets transfusion. 0-5K every time we test.


Got my first Rituxan on Tuesday. No Response yet. Still my usual 3K.

However, have had bleeding gums on and off, plenty of petechaie, blood blisters in mouth (new symptom for me), and HUGE bruises every time they stick a needle in me. Also, definitely "not feeling good."

Hope something works for both of us. Nice to know someone else is "alive" for such a long period of time with as low of a count as me.

P.S.

My Mother suggests that if I was just more active instead of going to my "idiot" doctors I would be "fixed" already, I'll tell her that you haven't had success in that department. :laugh:

I had vincristin same time I did rituxian had no responce. I did two rounds and the worst side effect I had was dandruff got lucky I guess but now worry that I may never be able to have kids a bit scary since I'm only 26. Its faster then rituximan if I remember took about 15 mintues. My doctor told me that there is a new study out about repeating retuxian but you take double the amount at once. I have seen this study yet but I looking forward to read it. I wish you luck in finding a treatment that works for you.

Thanks guys, if I'm honest and I was lucky enough to live like this for the rest of my life I'd be happy fair enough I bruise easy I get blisters and petechie on and off pretty regular but I'm living every other part of my life very well apart from contact sport which I love and bungee jumping and skiing I do everything I workout go on holiday ,go on roalacosters ,fly ,waterparks, work , I won't let it stop me ever no matter what I'll live life as full as I can and not let fear of th uknown stop me even if I do risk it a bit

Hi jpg,
Very sorry that after the good initial response to Nplate that nothing has worked for you.But your attitude to leading the life you manage and with the family demands of children inspires all of us. Best of luck for the future.
Derek

JPB - are you talking about rituxan?

He said he'd tried rituximab, so it must be vincristine.

JPB and tgurin12, I am interested to what works for you both. I was at less that 1,000 for 3 months and less than 5,000 for a total of probably 8 or 9 months (diagnosed about 2 yrs ago or so) and did just "fine" although I looked a little scary. IVIG worked for a little while but we are saving that in case I need it for emergency or God help us pregnancy (they don't want me to become resistant). Prednisone, Dexamethasone, Rituxin, and Promacta did not work. N-plate worked GREAT for almost 8 MONTHS- just long enough to hurt my feelings when it stopped working. Winrho, splenectomy, and finally *gulp* Azothioprine are my next options. I will not do Vincristine and I sure as heck will not go through Rituxin again. My plan when/if it all finally fails and we have nowhere to turn is to wrap myself in bubble wrap, try not to think about car wrecks and spontaneous brain hemorrhaging and start trying to replenish my savings. I often wonder if I just walked away from all the treatments how bad could it really be- at least the rest of my organs still working. Some of this stuff is so radical and its hard to imagine I can stay on any of it for a normal human life span... Yuck.