Rebecca2z
Paradise, Ca
- Messages
- 248
- Location
- Paradise Ca
Interesting thread. As I mentioned above, I wanted RTX because I was on deaths door, on feeding tube, complete autonomic failure - bedridden etc.. The last 5 years were horrid and getting worse almost by the minute. I have a very informed doctor at Stanford, he felt I had nothing to loose and everything to gain, that being said he (we) didn't know for sure this would do anything and for how long.
As far as making me worse, well that just couldn't happen, I was as bad as a person could be and still be alive. I wouldn't have done RTX 5 years ago, I had some quality of life at that time and I wouldn't risk getting worse.
The actual RTX infusion was easy peasy for me, especially the last 3. The first one I felt some gum burning, redness on chest and my throat got a bit tight feeling. They stopped the infusion right away. You are monitored through the whole thing.
The risk of PML, scared me ( still scares me ) the most in regards to having RTX. (Up to 92% of the adult population is JCV-seropositive) But I don't have HIV and 80% of reported PML patients have AIDS. I do have inflammatory issues, but not sure they are what you would call 'diseases' - ( Only 2% who have chronic inflammatory diseases get PML.) I was on myfortic for 2 years and it also has the risk for PML, I suppose there are many biologics that carry this risk.
The fact that PML is not easily treated and your a gonner in 2 months is scary. Plus I worry that I would be a even bigger burden for my husband. This all being said ~ I don't dwell on PML ~ as part of me believes that you can focus on things to the point that they actually manifest. Just wanted to let you know I did have some strong considerations in choosing to do RTX or not, mostly because of the risk of PML.
The other side effects didn't worry me so much because when you place them next to the kind of life I have been having they didn't look so bad .
Lets face it there needs to be a lot more research, before someone with ME would/should do this.
It's a good discussion to have !
As far as making me worse, well that just couldn't happen, I was as bad as a person could be and still be alive. I wouldn't have done RTX 5 years ago, I had some quality of life at that time and I wouldn't risk getting worse.
The actual RTX infusion was easy peasy for me, especially the last 3. The first one I felt some gum burning, redness on chest and my throat got a bit tight feeling. They stopped the infusion right away. You are monitored through the whole thing.
The risk of PML, scared me ( still scares me ) the most in regards to having RTX. (Up to 92% of the adult population is JCV-seropositive) But I don't have HIV and 80% of reported PML patients have AIDS. I do have inflammatory issues, but not sure they are what you would call 'diseases' - ( Only 2% who have chronic inflammatory diseases get PML.) I was on myfortic for 2 years and it also has the risk for PML, I suppose there are many biologics that carry this risk.
The fact that PML is not easily treated and your a gonner in 2 months is scary. Plus I worry that I would be a even bigger burden for my husband. This all being said ~ I don't dwell on PML ~ as part of me believes that you can focus on things to the point that they actually manifest. Just wanted to let you know I did have some strong considerations in choosing to do RTX or not, mostly because of the risk of PML.
The other side effects didn't worry me so much because when you place them next to the kind of life I have been having they didn't look so bad .
Lets face it there needs to be a lot more research, before someone with ME would/should do this.
It's a good discussion to have !
Last edited: