Rituxan Reaction

[Anne0505]

Hello,
I had my 2nd Rituxan infusion 2 weeks ago. Afterwards I developed a rash and had an on off low grade fever. I have noticed i choke when i drink since the last infusion and sometimes when i eat. Not constantly, just enough to be noticed. Its not messed with my breathing. I didn't think it was a big deal, so I didn't call the doctor. Then I got to the 3rd infusion and the nurse asks if I had a rash or fever. I answered truthfully. I just thought it was par for the course. The rheumatologist on call wouldn't okay me doing the 3rd round till I was seen. Today my rheumatologist approved the infusion, but I'm starting the benadryl tonight. That's in addition to the IV version that I will have in premeds with steroids and antacids. I'm supposed to stay on benadryl for the next 3 days. She is also having them run it very slow tomorrow. She said that if I have another reaction, this medication may be off limits for me.while I get that I could die froman an allergic reaction, I am concerned about.cutting off the medication that seems to be what keeps most people healthy.
She also was not pleased that my saddle defect is still rapidly progressing, my ankles are now swollen in addition to my knees. I've also developed edema in my hands and some fluid in my elbows. The crusting is also secere enough thst my nasal passages are considered blocked and the airway compromised. So the wegners is still active.

Has anyone had reactions on 2nd and further infusions when the 1st was fairly calm (hot flashes and elevated heart rate)? At what point are reactions something to call the doctor about? I really didn't think of this as a big deal until the nurses and doctors got all excited. It was just a rash, not a really nasty one. More annoying than anything. Should I be concerned?

[Aneinu]

Hello,
I had my 2nd Rituxan infusion 2 weeks ago. Afterwards I developed a rash and had an on off low grade fever. I have noticed i choke when i drink since the last infusion and sometimes when i eat. Not constantly, just enough to be noticed. Its not messed with my breathing. I didn't think it was a big deal, so I didn't call the doctor. Then I got to the 3rd infusion and the nurse asks if I had a rash or fever. I answered truthfully. I just thought it was par for the course. The rheumatologist on call wouldn't okay me doing the 3rd round till I was seen. Today my rheumatologist approved the infusion, but I'm starting the benadryl tonight. That's in addition to the IV version that I will have in premeds with steroids and antacids. I'm supposed to stay on benadryl for the next 3 days. She is also having them run it very slow tomorrow. She said that if I have another reaction, this medication may be off limits for me.while I get that I could die froman an allergic reaction, I am concerned about.cutting off the medication that seems to be what keeps most people healthy.
She also was not pleased that my saddle defect is still rapidly progressing, my ankles are now swollen in addition to my knees. I've also developed edema in my hands and some fluid in my elbows. The crusting is also secere enough thst my nasal passages are considered blocked and the airway compromised. So the wegners is still active.

Has anyone had reactions on 2nd and further infusions when the 1st was fairly calm (hot flashes and elevated heart rate)? At what point are reactions something to call the doctor about? I really didn't think of this as a big deal until the nurses and doctors got all excited. It was just a rash, not a really nasty one. More annoying than anything. Should I be concerned?
Firstly, wishing you well.
Secondly, yes, you should be concerned about it. Allergic reactions or Aversions to rtx happen.
My son had these rashes after third time. They could never determine cause, for it was more than a week after the rtx. He also passed out when they increased the speed.
That being said, he had rtx administered yesterday in hospital in half the speed. Thank God it went well. The other option is cytoxan, which we still would like to avoid, if we can.
Our prayers are with you.
Keep us posted please.

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[jakekell]

Anne,

I tried the Rituxan infusion 2 years ago and reacted asap to it so they had to stop. I now go to the Cleveland Clinic and a Dr. Alpher that I use when I am in Naples during the winter. The two listed agreed to say with MTX and due to the fact there is lactose in the pills I know do the injections once a week. I myself am doing much better on the MTX injections than before.

Wishing you well

[Aneinu]

Anne,

I tried the Rituxan infusion 2 years ago and reacted asap to it so they had to stop. I now go to the Cleveland Clinic and a Dr. Alpher that I use when I am in Naples during the winter. The two listed agreed to say with MTX and due to the fact there is lactose in the pills I know do the injections once a week. I myself am doing much better on the MTX injections than before.

Wishing you well
One thing that I just got clear from Dr villa-forte is as follows: they try to hit the disease with two punches. And when the disease is active, the options are rituximab, large dose of prendisone, cytoxan (And perhaps in the past something else). For maintenance, they use rtx, methotroxate, low doses of prendisone and azathioprine.

Maybe I'm wrong on a thing or two (or more), but that's what I remember.

Hope all is well with everyone.

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[jakekell]

Aneinu,

I also see Dr. Villa-forte, but now 10 years into wegs. I am sure different people need different drugs and RTX was not an option for me. I am able at this point to be controlled by the MTX injections, low dose prendisone. I think your needing more at this time than I am so more than likely she did tell you the above information.

[Aneinu]

Aneinu,

I also see Dr. Villa-forte, but now 10 years into wegs. I am sure different people need different drugs and RTX was not an option for me. I am able at this point to be controlled by the MTX injections, low dose prendisone. I think your needing more at this time than I am so more than likely she did tell you the above information.
Thank you for that.
How are you feeling in general?
And actually, it works with what I heard, for again, you are using two maintenance drugs, the MTX and the prend.

Either way, wishing you well.

Thanks

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[jakekell]

Thank you for that.
How are you feeling in general?
And actually, it works with what I heard, for again, you are using two maintenance drugs, the MTX and the prend.

Either way, wishing you well.

Thanks

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I am doing very well on these drugs now. I am getting a CPAP machine as my ENT said that I have a lot of scaring and this will help me sleep deeper. I had a bad spell for a year and one half, finally doing good.

I hope you can get to feeling good, how long have you had Wegs?

[Aneinu]

I am doing very well on these drugs now. I am getting a CPAP machine as my ENT said that I have a lot of scaring and this will help me sleep deeper. I had a bad spell for a year and one half, finally doing good.

I hope you can get to feeling good, how long have you had Wegs?
It is my son who has it.
October 2015 diagnosed.

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[jakekell]

I have found through this journey I was really bad in the beginning. I would say most of us go up and down with wegs. I am hoping the MTX injections continue to keep me steady, however I also know all these drug though the years can be hard on the body. One thing for sure Dr. Villa-Forte is good, really and that helps a lot.

[Aneinu]

Thank you so much.

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[timmy10]

timmy 10
I the same just had before christmas 2 infusions of Rituximab large load of prendisone and constant slightly higher dose of continuing Azathioprine.My prendisone though is being reduced due to side effects ie.breathing issues,leg tiredness and sleeping issues.On 15mg at moment.This all due because i went into relapse before christmas.I was diagnosed originall in november 2015 and had plasma exchange in St James Leeds then chemo treatment for 5 months and them Azathioprine but then relaps as i say december 2016.Back in remission now seeing how things going see my consultant every 4 weeks.

[Aneinu]

Wishing that all goes well.

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[luan22]

Thanks for the good information