Money Where Your Mouth Is ... Cellcept and Rituximab Advice

Tina

Well-Known Member
For a few years some of us were excited about what was coming out about Rituximab. I know the Phase 3 trial failed, but did anything come out about any subgroups having a positive outcome? I also saw some stories about it harming some subgroups. I am getting close to having the opportunity to take Rituximab and I am not sure if I should pursue it or not.

For years the only diagnosis I have had is CFS and for years the only treatment I have been given is Gabapentin. 10 years give or take. (And don't get me started on how angry I am at my doctors for dumping me on Gabapentin and now all of a sudden I need to "get off of this high risk drug!") I digress....

A short synopsis:
2008 diagnosed with CFS
2014 go to Workwell which shows abnormal cardio/pulmonary in every category so my doctor finally sends me to pulmonologist
2014 diagnosed with Non Specific Interstitial Pneumonia (would never have been found without WORKWELL!)
2017 based on a Myositis Lab Panel I am diagnosed with Antisynthetase Syndrome (Interstitial Lung Disease, Dermatomyosits and Polymyositis and have Jo 1 antibody)
2018 based on a Myositis Lab Panel sent to a specific lab in Los Angeles test positive for antiRo52 which leads my doctor to give diagnose me with Sjogren's Syndrome (mind you I still am negative for antiRo52 at my doctor's lab)

My doctor states that I do not have ME/CFS but only the Antisynthetase Syndrome and the Sjogren's Syndrome. Both of these are serious enough and I will begin taking the immunosuppressive drug Cellcept on June 5. If the Cellcept does not workout they will likely put me on Rituximab.

Wondering how hard I should push for it. Have any of you been put on either Cellcept or Rituximab?
 

Remy

Administrator
For a few years some of us were excited about what was coming out about Rituximab. I know the Phase 3 trial failed, but did anything come out about any subgroups having a positive outcome? I also saw some stories about it harming some subgroups. I am getting close to having the opportunity to take Rituximab and I am not sure if I should pursue it or not.

For years the only diagnosis I have had is CFS and for years the only treatment I have been given is Gabapentin. 10 years give or take. (And don't get me started on how angry I am at my doctors for dumping me on Gabapentin and now all of a sudden I need to "get off of this high risk drug!") I digress....

A short synopsis:
2008 diagnosed with CFS
2014 go to Workwell which shows abnormal cardio/pulmonary in every category so my doctor finally sends me to pulmonologist
2014 diagnosed with Non Specific Interstitial Pneumonia (would never have been found without WORKWELL!)
2017 based on a Myositis Lab Panel I am diagnosed with Antisynthetase Syndrome (Interstitial Lung Disease, Dermatomyosits and Polymyositis and have Jo 1 antibody)
2018 based on a Myositis Lab Panel sent to a specific lab in Los Angeles test positive for antiRo52 which leads my doctor to give diagnose me with Sjogren's Syndrome (mind you I still am negative for antiRo52 at my doctor's lab)

My doctor states that I do not have ME/CFS but only the Antisynthetase Syndrome and the Sjogren's Syndrome. Both of these are serious enough and I will begin taking the immunosuppressive drug Cellcept on June 5. If the Cellcept does not workout they will likely put me on Rituximab.

Wondering how hard I should push for it. Have any of you been put on either Cellcept or Rituximab?
I would suggest going over to Phoenix Rising and speaking with Gingergrrl. She has done very well on rituximab and has a wealth of experience to share.

https://forums.phoenixrising.me/index.php?threads/is-cellcept-a-tailor-made-drug-for-me-cfs-b-cells-t-cells-coxsackie-herpes.53616/
 

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