sparklehoof
Senior Member
- Messages
- 186
- Location
- North Carolina
Two of my doctors have recommended Ritux (though neither administer it).
I'm scheduled to meet with a hematologist in NY in few weeks. Since my other doctors felt confident that I qualify and that my insurance will cover it, I decided it was best for me to relocate to NYC temporarily to where all 3 of my dr's are. In order to have the Tx ASAP I needed to make a decision about renting a room so that I could find something safe and affordable in advance. I rented a room through AirBnB starting the first week of Nov- the 1st week in January.
I'm a little scared that I won't be able to care for myself After reading some of the warnings and side effects online. I'm wondering if I may need to try to hire a nurse or some kind of aide? I'm only a little bit familiar with NYC and I believe I'll have about an an hour subway commute between where I'm staying and the doctors office. I also just learned that the room is in a 4-floor walk up and I may have to climb a ladder (about 6ft) to get to and from my bedroom...but it's in a safe area, 4 blocks from the subway and I'll be about 3 blocks from a grocery store.
If anyone who has undergone the treatment could answer any of the following questions, that would be amazing:
1. Do we know what the risk of fatality is for PWME I've read 2.5%-10.5% depending on a patient's diagnosis and other factors)
2. If the highest risk of fatal infection is during the first 24hrs, did you stay overnight wherever your treatment was administered?
3. I read some of the contraindications include Herpes and Parvovirus. Has anyone here been treated who has one or both? ( I have past infection of Parvo and HHV6, but my 1st two dr's didn't mention that it was a problem.)
4. What were your side affects like and what are the chances that one I could become a lot worse temporarily or permanently?
4. What was your treatment schedule like? How frequently did you have the infusions, how long do they take? How often did you have follow up doctor's visits? (I've read it's usually given in two doses 2 wks apart, but I was told that my doctor uses 4 weekly doses. My rheumatologist said he would like to see me after 2wks)
5. How often are courses usually repeated? (Every 6-12 months?)
6. Was it recommended that you have the flu vaccine at least 1 month before?
Thank you ME community!
I'm scheduled to meet with a hematologist in NY in few weeks. Since my other doctors felt confident that I qualify and that my insurance will cover it, I decided it was best for me to relocate to NYC temporarily to where all 3 of my dr's are. In order to have the Tx ASAP I needed to make a decision about renting a room so that I could find something safe and affordable in advance. I rented a room through AirBnB starting the first week of Nov- the 1st week in January.
I'm a little scared that I won't be able to care for myself After reading some of the warnings and side effects online. I'm wondering if I may need to try to hire a nurse or some kind of aide? I'm only a little bit familiar with NYC and I believe I'll have about an an hour subway commute between where I'm staying and the doctors office. I also just learned that the room is in a 4-floor walk up and I may have to climb a ladder (about 6ft) to get to and from my bedroom...but it's in a safe area, 4 blocks from the subway and I'll be about 3 blocks from a grocery store.
If anyone who has undergone the treatment could answer any of the following questions, that would be amazing:
1. Do we know what the risk of fatality is for PWME I've read 2.5%-10.5% depending on a patient's diagnosis and other factors)
2. If the highest risk of fatal infection is during the first 24hrs, did you stay overnight wherever your treatment was administered?
3. I read some of the contraindications include Herpes and Parvovirus. Has anyone here been treated who has one or both? ( I have past infection of Parvo and HHV6, but my 1st two dr's didn't mention that it was a problem.)
4. What were your side affects like and what are the chances that one I could become a lot worse temporarily or permanently?
4. What was your treatment schedule like? How frequently did you have the infusions, how long do they take? How often did you have follow up doctor's visits? (I've read it's usually given in two doses 2 wks apart, but I was told that my doctor uses 4 weekly doses. My rheumatologist said he would like to see me after 2wks)
5. How often are courses usually repeated? (Every 6-12 months?)
6. Was it recommended that you have the flu vaccine at least 1 month before?
Thank you ME community!