I found this info about it by Martin Thomas :
I can see why it might be considered to potentially benefit vasculitis patients although the true 'mechanics of the disease are still not fully understood. The drug causes an increase in the levels of opioid growth factor (OGF) which 'controls proliferation of all cells, including immune cells (T-cells and B-cells)'. These being the ones depleted by targeted immuno-suppression drugs such as Rituximab and in turn the disease is effectively 'switched off'. Unlike traditional chemotherapy, the process this drug produces is immuno-regulatory than directly immuno-suppressive.
I found a number of reports on MS support sites which suggest it may be efficient in reducing fatigue but whether the same processes are involved in vasculitis patients is unknown. Some of the side effects described don't sound particularly pleasant and anything which causes problems with sleeping is something I'd be very concerned about.
A quick search of peer reviewed literature didn't reveal any research studies involving vasculitis sufferers and I'm always particularly wary of 'amazing results!' websites, particularly American ones.
I'd be interested to hear the opinion of others here who may have used the drug and of those who have a much better understanding of medicine (John?!). Given an opportunity I'll ask David Jayne and Lorraine Harper for their considered views when I hopefully meet them in a couple of weeks time. MY own consultant is also pretty switched on and accessible so I'll ask him too.
Clearly you're being rightfully cautious and I'm certainly interested to research this further. In the meantime and out of curiosity, was this suggested by your GP?consultant or did you come across it by other means?
Healthy wishes.
Martin
This was posted on some UK Vasculitis forum.
Last edited by drz; 05-02-2016 at 03:20 PM.
Knowledge is power! Wisdom is using it to make good decisions!
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