Rebecca2z
Paradise, Ca
- Messages
- 248
- Location
- Paradise Ca
As many know here I have been getting RTX for a little over a year and I wanted to give an update.
I have been getting RTX about every 5 mo, when ( for lack of a better way to put it ) the RTX wears off I am in severe pain in my hands & feet, can't tolerate the sun, have tons of discoid lupus sores stc...
I get blood work every month to check the B-Cells & T-cells - which my doctor uses to determine when I need the RTX again, but I can tell right away when I need the RTX, (my severe burning joint pain tells me ) The first time I got the RTX I had it once every week for 4 weeks and it seemed to hold me for about 6-7 months. But now I get RTX every 5 months - one every week for 2 weeks and this only holds me for about 4 months, maybe 5 months.
I have to say that I have been getting an even better response to the RTX with each round, in other words I feel better - stronger -less neuro pain, joint pain, fatigue, weakness, eating better, much less brain fog, can tolerate the sun and no lupus sores, etc... Not letting my body return to it's state of attacking me and keeping me at a certain level seems to be very beneficial. ( not informed enough to put it any other way )
This all being said I am unhappy with the pre-meds that they insist on giving with the RTX - They are about killing me. They give a large dose of steroids and I am not having an easy time with those. I have major fungus issues and these steroids feed that.
Also due to the steroids I get an infection that requires antibiotics and this also feeds the fungus. I have been dealing with record breaking fungus that has brought me to the ER several times and they suspect I am having fungus issues in my brain, but several spinal taps ( followed by spinal leaks ) later we still don't know for sure.....
The severe headache, neck pain and nausea are very defined. and so I am guessing it is in my brain. I am taking massive doses of itraconazole which seems to tamp it down some, but when I cut back on those about 4-5 days later the brain pain, neck pain and nausea is back, not sure if this Itra crosses the BBB and feel I need capsofungin..
I see Stanford soon and hope they help me with this issue.
@Jonathan Edwards any insight or thoughts on premeds with RTX - in your experience are there other pre-meds that can be used besides steroids ?
I have been getting RTX about every 5 mo, when ( for lack of a better way to put it ) the RTX wears off I am in severe pain in my hands & feet, can't tolerate the sun, have tons of discoid lupus sores stc...
I get blood work every month to check the B-Cells & T-cells - which my doctor uses to determine when I need the RTX again, but I can tell right away when I need the RTX, (my severe burning joint pain tells me ) The first time I got the RTX I had it once every week for 4 weeks and it seemed to hold me for about 6-7 months. But now I get RTX every 5 months - one every week for 2 weeks and this only holds me for about 4 months, maybe 5 months.
I have to say that I have been getting an even better response to the RTX with each round, in other words I feel better - stronger -less neuro pain, joint pain, fatigue, weakness, eating better, much less brain fog, can tolerate the sun and no lupus sores, etc... Not letting my body return to it's state of attacking me and keeping me at a certain level seems to be very beneficial. ( not informed enough to put it any other way )
This all being said I am unhappy with the pre-meds that they insist on giving with the RTX - They are about killing me. They give a large dose of steroids and I am not having an easy time with those. I have major fungus issues and these steroids feed that.
Also due to the steroids I get an infection that requires antibiotics and this also feeds the fungus. I have been dealing with record breaking fungus that has brought me to the ER several times and they suspect I am having fungus issues in my brain, but several spinal taps ( followed by spinal leaks ) later we still don't know for sure.....
The severe headache, neck pain and nausea are very defined. and so I am guessing it is in my brain. I am taking massive doses of itraconazole which seems to tamp it down some, but when I cut back on those about 4-5 days later the brain pain, neck pain and nausea is back, not sure if this Itra crosses the BBB and feel I need capsofungin..
I see Stanford soon and hope they help me with this issue.
@Jonathan Edwards any insight or thoughts on premeds with RTX - in your experience are there other pre-meds that can be used besides steroids ?