Rtx efficiency - long time use - Poll

[loisann11]

I have been getting rtx every 6 months since April 2013. So far it does the job of killing my immune system which is what it is suppose to do. No side effects for me from it and it takes about 5 hours as an infusion 1 time. They call it remission. I am confused most of the time since I still feel like crap. I have aches and pains, right now I have an ear infection. I never know what is going on. If this is just the way it is or is something really wrong. Anyone out there know?? Does this thing still make you feel like crap even if you are in remission?? I can't seem to find anyone with an answer to that.... Thanks

[Alysia]

I have been getting rtx every 6 months since April 2013. So far it does the job of killing my immune system which is what it is suppose to do. No side effects for me from it and it takes about 5 hours as an infusion 1 time. They call it remission. I am confused most of the time since I still feel like crap. I have aches and pains, right now I have an ear infection. I never know what is going on. If this is just the way it is or is something really wrong. Anyone out there know?? Does this thing still make you feel like crap even if you are in remission?? I can't seem to find anyone with an answer to that.... Thanks

Good question. Can you please start a new thread with it ? I think many of us can relate.

[jmq]

Alyssa,

I share your experience and concerns. just finished my 2nd infusion of RTX as well. No difference in symptoms yet. On 60mg of prednisone daily which barely controls my connective tissue / nerve issues in my legs, arms, hands and face. I've tried to go down to 40 mg daily but I start feeling really bad when I do. Staying on 60mg and trying not to go up from there but I am barely making it. I take 20 mg in the AM, 20 at mid day and 20 with dinner to spread it out a little bit.

By the time 5pm comes around and that prednisone drug level in my body starts going down, I start feeling pretty bad with nerve pain, extremity pain, numbness in my face, eye, etc. Once I take my next dose of prednisone, symptoms improve a little bit and I get through the night and then we start all over again in the morning. I can barely focus and work during the day which makes me think I should really be on higher doses of prednisone. Not sure how long I will able to get away with staying on 60mg. I feel my body is already getting used to it and it's not being as effective.

Getting really bad heart palpitations, high pulse rate all the time. When i left the infusion center last time, my blood pressure was pretty high. Is that the prednisone? Even had a dizzy spell and I think what it was an episode of arrhythmia / extra heart beat. This made me bit and broke my lip really bad, also felt backwards on the floor.

I'm going to try to go to Dr. today to have my fat lip taken a look at since it might look infected and my immune system is compromised. Maybe they can check my blood pressure as well. Not sure if they can give me something to counteract / regulate that.

Will share what I find out.
Jeannette

[jmq]

loisann and alysia,

I share your experience and concerns. just finished my 2nd infusion of RTX as well. No difference in symptoms yet. On 60mg of prednisone daily which barely controls my connective tissue / nerve issues in my legs, arms, hands and face. I've tried to go down to 40 mg daily but I start feeling really bad when I do. Staying on 60mg and trying not to go up from there but I am barely making it. I take 20 mg in the AM, 20 at mid day and 20 with dinner to spread it out a little bit.

By the time 5pm comes around and that prednisone drug level in my body starts going down, I start feeling pretty bad with nerve pain, extremity pain, numbness in my face, eye, etc. Once I take my next dose of prednisone, symptoms improve a little bit and I get through the night and then we start all over again in the morning. I can barely focus and work during the day which makes me think I should really be on higher doses of prednisone. Not sure how long I will able to get away with staying on 60mg. I feel my body is already getting used to it and it's not being as effective.

Getting really bad heart palpitations, high pulse rate all the time. When i left the infusion center last time, my blood pressure was pretty high. Is that the prednisone? Even had a dizzy spell and I think what it was an episode of arrhythmia / extra heart beat. This made me bit and broke my lip really bad, also felt backwards on the floor.

I'm going to try to go to Dr. today to have my fat lip taken a look at since it might look infected and my immune system is compromised. Maybe they can check my blood pressure as well. Not sure if they can give me something to counteract / regulate that.

Will share what I find out.
Jeannette