Rituximab for MCS and CFS

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You're welcome.

I almost forgot. I tried one other therapy:
Tocilizumab (Actemra) - an IL-6 inhibitor

It dampened my symptoms like migraines from certain foods but was not more effective than UC-MSC or Rituximab. It is much cheaper though.
Hope all is well. I hope you do not mind if I ask a few questions. I have severe chemical sensitivity and just a few months ago have become chronically fatigued. I’ve been very interested in trying stem cell therapy, and wanted to ask how it worked out for you? I’ve read quite a few recently published scientific papers that strongly suggest that MCS is caused by neurologic sensitisation, and so I’ve found a stem clinic in Colombia that offer intranasal, intrathecal and IV delivery of stem cells. If the papers are correct, then at least the former two delivery methods should target the affected areas of the brain (olfactory bulb and pathway). Unfortunately I haven’t been able to find any information about stem cell treatment for MCS, and was hoping you wouldn’t mind sharing your experience with it? I’ve also seen from your previous posts that you have a lot of knowledge in this area and wanted to see if you have any thoughts on gene therapy as a potential course of treatment. I’ve read that certain individuals are more genetically susceptible to this condition than others and that a specific gene mutation is very common and highly likely to be linked to the disease. And lastly, just wanted to ask what has been your most effective form of treatment. Thanks very much and my best wishes
 

kyzcreig

Senior Member
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Hi,

Thank you, all is well.

1) Stem cells helped damped symptoms but did not make them go away like Rituximab did. So a headache was still possible but it wouldn't feel nearly as bad, it was minor. The benefits of UC-MSC only lasted about 2 months and faded after 1 month. I wouldn't recommend it if cost is a concern.

2) I've read similar papers. In my case I don't think MCS has to do with neural sensitization or the olfactory bulb. I can react to things that are touching me e.g. a blanket washed with detergent I don't do well with. Or foods, I am sensitive to many foods. That seems more like dendritic cells. There's probably multiple etiologies for MCS, but in my case it's likely a systemic autoimmune issue which is why Rituximab helped so much (although did not fully cure me).

3) I'm sure there's a genetic component, my family has a history of autoimmune issues. I would not use gene therapy right now because it's unclear what genetic changes would improve the condition and the cost of gene therapy gone wrong might be high.
 
Last edited:
Messages
8
Likes
13
Hi,

Thank you, all is well.

1) Stem cells helped damped symptoms but did not make them go away like Rituximab did. So a headache was still possible but it wouldn't feel nearly as bad, it was minor. The benefits of UC-MSC only lasted about 2 months and faded after 1 month. I wouldn't recommend it if cost is a concern.

2) I've read similar papers. I don't think MCS has anything to do with neural sensitization or the olfactory bulb. At least in my experience. I can react to things that are touching me e.g. a blanket washed with detergent I don't do well with. That seems more like dendritic cells. There's probably multiple etiologies for MCS, but in my case it's likely a systemic autoimmune issue which is why Rituximab helped so much (although did not fully cure me).

3) I'm sure there's a genetic component, my family has a history of autoimmune issues. I would not use gene therapy right now because it's unclear what genetic changes would improve the condition and the cost of gene therapy gone wrong might be high.
Thank you, this information is very valuable to me. Though must admit I’m disappointed to hear that stem cells were not more effective. All my symptoms are triggered inhalation of triggers only, eg car fumes etc., so I guess my MCS is more likely to be linked with neurologic sensitisation.