I am a very active 40 year old female who has been dealing with ITP for about 20 years now. Like everyone else, my counts have bounced up and down, but generally stay within the range of 20-40k. I did have a splenectomy in 1997 that did not really take care of anything - obviously. While training for a full Ironman triathlon, my counts fell to 9k. My hemo flipped out and put me on 60mgs of Prednisone each day. He has since decreased the dose, but my counts have fallen from 226k back to 52k. He now wants me to begin Rituxin treatments. Not sure if I want to kill any other living part of my body. Has anyone experienced this treatment before? Results? I refuse to be identified by a chronic disease and would like to find a more natural way to deal with this since it looks like it will be around for awhile.
Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006.
Last Count - 344k - 6-9-18
Thank you received: 2371
No one has found any tried and true natural treatment that works for all. Most of it is trial and error with different diet changes or supplements. There are hundreds of different combinations - take your pick.
Rituxan can work well if a person is responsive. Side effects are usually minimal but there are some serious risks as well.
I have been unresponsive to more than 10 treatments and still have my spleen and I tried Rituxan in 2009-2010 and it had absolutely no effect on my platelet count. I honestly didn't notice anything physically. They give you the Rituxan along with Benadryl, Methylprednisolone (Solu-Medrol) and the anti-nausea drug Odansetron (Zofran). Of course some doctors may use different steroids or anti-emetics. Anyways it was not effective, didn't make me ill like I was told it could. It didn't permanently change anything that I know of because my health is more or less the same as before I tried it. The one drug I would not suggest is Nplate and that is because I was in the 3rd phase clinical trial for Nplate (Romiplostim) and it raised my count to 70k for months which was good but I went home for the week and ended up in the hospital with chest pain only to learn my count had shot up to 400k, and I suffered a pulmonary embolism which has caused problems, such as bleeding inside my pleural cavity of the lungs, requiring chest tube drainage (multiple times), and my lungs have been left scarred, and I commonly end up infected with pneumonias. (more than 3-4 times a year). I wouldn't suggest Nplate for anyone unless they lead an extremely active life and don't spend many hours in bed motionless like I do lol.
My ITP story is much like yours. I am a male, 54 years old. Had my spleen removed 20 years ago - a success. But had relapses and the most serious since my spleen removal began in 2011. It took me 9 months to get off pred. Through it all I managed to avoid taking Rituxin - which was my most obvious next line of treatment. How did I do it? There was no one single thing. But I did the following:
- did a very serious diet (detoxed),
- went gluten free in the process,
- cut back on sugar in a major way,
- tried Reiki (which helped),
- took probiotics daily (still do),
- tried homeopathy which saved me in 2013 (and will use for the rest of my life),
- and worked out many of my allergies and in tolerances, (avoid dust, chlorine - pools, etc).
So yes there is a way out through a more natural approach. It takes time, lots of time, perseverance, and patience.
Today I feel as good as I ever have, despite the years and mileage. My counts are typically 200 - 250k and I don't think about my ITP much anymore. GL.
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