SK2018
SK
- Messages
- 239
- Location
- Asia wide + UK
Original Diagnosis:
CFS
Re Diagnosis:
Systemic immune dysfunction with NMDA autoimmunity.
Symptoms:
Fatigue,brain fog ,swollen glands ,flu syndromes after physical exertion,vivid dreams,inability to gain cognitive or physical energy after sleep,tingling ,Numbness ,trouble thinking,gait issues,de realization,
Hey everyone
It's been a while since an update , I am in mainland Europe now and have just finished plasmapheresis and I am on 80mg of steroids per day.
I had 4 Grams of IV steroids 3 weeks ago and had no side effects despite the massive dose.
Yesterday I finished a 1000mg infusion of the cytotoxic immune modulating drug (cyclophosphamide) and luckily
til now I don't have any adverse reactions.
After 2 more plasmapheresis sessions i will fly to Switzerland to get BORTEZOMIB which is a drug similar to Rituximab but better in the sense that not only does it effect B cells it also effects non CD20 "plasma cells" such as long lived plasma cells that secrete antibodies.
After talking to some patients that didn't respond well to Rituximab they were able to get good improvement with bortezomib and the safety profile in many cases is better than RTX esp when given as sub cutaneous infusions and finally the cost of the drug is similar to RTX.
I have improved since starting my treatment my fatigue is down 50% I don't get flu symptoms after doing too much and I can think more clearly ,I am happy to be making progress.
The doctors in Europe have been great ,they communicate with me and try their best to help me ,it's a world apart from the disgusting attitude of some NHS physicians.I will have a new friend outside of medecine with this Doctor when I leave here for sure.
After I get the Bortezomib I will update again 2 weeks after infusion.
My IGG viral titers have all came down to near normal levels since treatment also so instead of 1:350 1:400 they are now 1:40 and 1:50 ect.
For more info on Bortezomib please check here.
http://www.futuremedicine.com/doi/full/10.2217/imt.15.66?src=recsys&
Sadly I was not able to tolerate Rituximab due to infusion reactions;(
I hope my struggle can inspire you all to never give up you WILL find a path out of this and get your lives back.
Regards
www.facebook.com/shawnkregan
Disclaimer:
This is the treatment plan that I and my doctor have decided is best for my situation ,please always consult with your doctor before perusing any treatment regimens with potentially risky drugs to weigh out the risk benefit ratio.
BACKGROUND STORY
My original post and background.
http://forums.phoenixrising.me/inde...g-cause-of-my-cfs-anti-nmda-antibodies.47413/
CFS
Re Diagnosis:
Systemic immune dysfunction with NMDA autoimmunity.
Symptoms:
Fatigue,brain fog ,swollen glands ,flu syndromes after physical exertion,vivid dreams,inability to gain cognitive or physical energy after sleep,tingling ,Numbness ,trouble thinking,gait issues,de realization,
Hey everyone
It's been a while since an update , I am in mainland Europe now and have just finished plasmapheresis and I am on 80mg of steroids per day.
I had 4 Grams of IV steroids 3 weeks ago and had no side effects despite the massive dose.
Yesterday I finished a 1000mg infusion of the cytotoxic immune modulating drug (cyclophosphamide) and luckily
til now I don't have any adverse reactions.
After 2 more plasmapheresis sessions i will fly to Switzerland to get BORTEZOMIB which is a drug similar to Rituximab but better in the sense that not only does it effect B cells it also effects non CD20 "plasma cells" such as long lived plasma cells that secrete antibodies.
After talking to some patients that didn't respond well to Rituximab they were able to get good improvement with bortezomib and the safety profile in many cases is better than RTX esp when given as sub cutaneous infusions and finally the cost of the drug is similar to RTX.
I have improved since starting my treatment my fatigue is down 50% I don't get flu symptoms after doing too much and I can think more clearly ,I am happy to be making progress.
The doctors in Europe have been great ,they communicate with me and try their best to help me ,it's a world apart from the disgusting attitude of some NHS physicians.I will have a new friend outside of medecine with this Doctor when I leave here for sure.
After I get the Bortezomib I will update again 2 weeks after infusion.
My IGG viral titers have all came down to near normal levels since treatment also so instead of 1:350 1:400 they are now 1:40 and 1:50 ect.
For more info on Bortezomib please check here.
http://www.futuremedicine.com/doi/full/10.2217/imt.15.66?src=recsys&
Sadly I was not able to tolerate Rituximab due to infusion reactions;(
I hope my struggle can inspire you all to never give up you WILL find a path out of this and get your lives back.
Regards
www.facebook.com/shawnkregan
Disclaimer:
This is the treatment plan that I and my doctor have decided is best for my situation ,please always consult with your doctor before perusing any treatment regimens with potentially risky drugs to weigh out the risk benefit ratio.
BACKGROUND STORY
My original post and background.
http://forums.phoenixrising.me/inde...g-cause-of-my-cfs-anti-nmda-antibodies.47413/
Last edited: