• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Search results

  1. S

    Throwin up White Flag on Rituxan Also! :(

    I couldn't agree more! We need the big bucks like cancer patients get. This disease is debilitating in a way that no one truly understands until they get it. But it needs to get out there. I pray that through film or exposure other ways that the word will get out that we deserve help. We are...
  2. S

    Throwin up White Flag on Rituxan Also! :(

    Hi Ben, thanks for your response. i'm so sorry you are having a tough time too. i didn't do well on valcyte. it is tough. these drugs are very powerful but our symptoms are brutal and neverending. I appreciate your kindness! =) really helps keep me going when I feel so alone surrounded by LA...
  3. S

    Throwin up White Flag on Rituxan Also! :(

    Hi young&sick, Thanks for the response. I always had a low grade fever with my CFS. Dr. Kogelnik treated me and tested me for all the infections he thought I could have had before getting the infusions. I believe I didn't have these infections going into it, but I might still have something that...
  4. S

    Throwin up White Flag on Rituxan Also! :(

    Hi Irene, Sorry I didn't get to respond sooner. I am having a rough time. Let's see I was a patient of Dr. Kogelnik since 2009-2013. I will be getting a copy of my records from him as I am changing doctors, but he ran the thorough tests I believe since he is the CFS/ME doctor and he worked at...
  5. S

    Throwin up White Flag on Rituxan Also! :(

    Thanks for your response. It takes me awhile to answer as I am quite under the weather these days. To answer your question the Doctors at Stanford thought that the Rituxin comprised my immune system as it does in everybody and they treated me as an immune comprised patient. I was quarantined...
  6. S

    Throwin up White Flag on Rituxan Also! :(

    * Oh and PS to those of you who are considering Rituxan...if you fall into the PAIN syndrome category my opinion is DON'T do RITUXAN!!! I asked my doc if I was the only one responding with an inflammitory BOMB response...and his reply was "No that those who have the pain syndromes are...
  7. S

    Rituximab in the USA - Dr. Kogelnik

    I'm finished with infusion 3, I live in CA. He is authorized to use it because he is a top researcher and is in contact with every important ME doctor around the world all looking at our vast amounts of blood. It is a rough start infusion 1 is hard painful and long But after that it goes...
  8. S

    Status of Rituximab-ME/CFS Studies

    Rituxan I'm starting treatment in a month. Does anyone else know of anyone here who also is getting it before trials? I have a pretty severe case with the pain levels and fatigue.