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I thought it would be worth sharing my experience with Equilibrant, Rituximab and Valcyte thus far.
I trialled Equilibrant for a total of 7 months at 3 tablets twice daily. I initially weaned up the dose but experience a significant feeling of inflammation in my head that was quite unbearable. This lasted some 6-8 weeks. Unfortunately Equilibrant didn't seem to have any noticeable beneficial effects whatsoever despite the strongest herx I have had to any intervention.
So I ended up getting Rituximab, I had around 5 infusions. To my amazement after quite some months, I began to experience 'fleeting' moments of quite dramatic improvements in global symptoms. These moments lasted from around 6 hours to a whole day at a time. These periods had been the greatest level of improvement I have experienced since getting ill, but unfortunately the sticking point is these improvements did not become more frequent or last of a longer duration.
I also tried methotrexate at 15mg/weekly for 12 weeks as I believed the beneficial effects of Adenosine A2a agonism on inflammation might prove useful in this disease - this is the only intervention that has significantly improved my heat intolerance and POTS symptoms. But unfortunately it did not help with sleep, weakness, pain or any other symptoms. I terminated treatment at 12 weeks because of elevated gamma gt levels.
So now I'm onto Valganciclovir.900mg Once Daily. I wonder somewhat if I had of been on it whilst having the Rituximab if the results would have been greater, but who knows!? So far I've only been on it two weeks and I'm getting moderate headaches every so often helped a lot by naproxen and codeine and bad heart pains that do not alleviate with aspirin, but fortunately these have not been as bad the past few days. I will get LFTS CBC's etc retested in about a week. Also taking milk thistle to protect the liver and maintaining good water intake. Will let you know how I get on.
Energy
I trialled Equilibrant for a total of 7 months at 3 tablets twice daily. I initially weaned up the dose but experience a significant feeling of inflammation in my head that was quite unbearable. This lasted some 6-8 weeks. Unfortunately Equilibrant didn't seem to have any noticeable beneficial effects whatsoever despite the strongest herx I have had to any intervention.
So I ended up getting Rituximab, I had around 5 infusions. To my amazement after quite some months, I began to experience 'fleeting' moments of quite dramatic improvements in global symptoms. These moments lasted from around 6 hours to a whole day at a time. These periods had been the greatest level of improvement I have experienced since getting ill, but unfortunately the sticking point is these improvements did not become more frequent or last of a longer duration.
I also tried methotrexate at 15mg/weekly for 12 weeks as I believed the beneficial effects of Adenosine A2a agonism on inflammation might prove useful in this disease - this is the only intervention that has significantly improved my heat intolerance and POTS symptoms. But unfortunately it did not help with sleep, weakness, pain or any other symptoms. I terminated treatment at 12 weeks because of elevated gamma gt levels.
So now I'm onto Valganciclovir.900mg Once Daily. I wonder somewhat if I had of been on it whilst having the Rituximab if the results would have been greater, but who knows!? So far I've only been on it two weeks and I'm getting moderate headaches every so often helped a lot by naproxen and codeine and bad heart pains that do not alleviate with aspirin, but fortunately these have not been as bad the past few days. I will get LFTS CBC's etc retested in about a week. Also taking milk thistle to protect the liver and maintaining good water intake. Will let you know how I get on.
Energy