Reaction to Ritixumab

[gwenllian111]

Hi

I'm not sure if this is of any real relevance, but I just wanted to say that after 4 years of Ritiumab infusions, I have now had such severe reactions to it, that I am unable to have anymore. After my last infusion, my lungs collapsed and became very inflammed - so my doctors have withdrawn it's use as a result.

So, now, I can't tolerate ANY meds apart from pred.

The plan is, if I have a flare up, that I go back to the good old days of plasma exchange.

Just wanted to let you know of the Ritix reaction, as the symptoms I experienced 48 hours post infusion were:

Chest Pain
Shortness of Breath
High Temp

Best wishes to you all, Gwen x

[Sangye]

Oh no, Gwenllian I'm so sorry to hear this. I'm glad at least you have the option of plasmapheresis.

It might interest you to know they're currently recruiting for a study about using plasma exchange for lung involvement--it's only been used for kidney involvement before. Here's the link to the research info. Many UK hospitals are taking part.

I've always had a strong gut feeling that plasmapheresis would be the best treatment for me and that it would have gotten me into remission right from the start. I think of it and actually crave it, like food or something. Hard to describe. Interestingly, the very type of Wegs lung involvement they're testing is lung hemorrhage-- my body's favorite pasttime!

I had an intuitive feeling like that about Cellcept (once I got over the 3-week total freak-out about having to continue treatment). And it did help me, just didn't use a high enough dose.

Take care, Gwenllian. Kiss those babies for me.

[Palmyra]

Gwenllian,
So sorry to hear the news, but thank you for reporting to us. My daughter had taken two 'biologics' previously for Crohn's disease, and had reactions to those (Remicade and Humira respectively). I have read evidenced based reports that Humira or other TNF~alpha inhibitors are responsible for the development of some cases of Vasculitis (Vasculitis/TNF-alpha blockers). She developed pancreatitis in short order after use of immuran....so I can relate to your frustration.

There are new drugs always coming down the pipeline, and hopefully some that will take treatment into a new direction. Unfortunately, all can have significant side effects. Sangye's message regarding plasmapheresis is very interesting, in that it is tried and true, and works on a totally different model than targeted medications that may have a component to aggrevate and already hypersensitve immune system.

Please keep us posted on your progress.

[DEE]

Gwenllian
So sorry to hear your news too . Please take care of you DEE

[elephant]

Gwen, I too had those reactions with Imuran. It is scarey, but glad they know now and will continue with a differnet treatment. Keep us updated. Take care.

[drz]

Hi

I'm not sure if this is of any real relevance, but I just wanted to say that after 4 years of Ritiumab infusions, I have now had such severe reactions to it, that I am unable to have anymore. After my last infusion, my lungs collapsed and became very inflammed - so my doctors have withdrawn it's use as a result.

So, now, I can't tolerate ANY meds apart from pred.

The plan is, if I have a flare up, that I go back to the good old days of plasma exchange.

Just wanted to let you know of the Ritix reaction, as the symptoms I experienced 48 hours post infusion were:

Chest Pain
Shortness of Breath
High Temp

Best wishes to you all, Gwen x

Sounds like a bad experience. It is a good reminder that reactions can happen at any time and just because you have tolerated something well doesn't mean it be the same the next time. It is also a source of anxiety when you find you have been through several or the major drugs used for treatment and wonder what happens with next flare. Hope things go well for you and they find some new drugs for us soon.

[Brooke]

Wow, that is very scary! What were your reactions to it in the begining? How soon after your last infusions did your lungs collapse? Like hours, days, weeks, months? I hope you can find something that works for you.

[Palmyra]

Yep....thanks for your post gwenllian. I am sorry for your ordeal, but appreciate your willingness to share your experience with the group. I hope you find something else that can help you achieve periods of "quiet".

My daughter is scheduled for her forth Rtx infusion series in as many years, to begin on Wednesday of this week. I have decided to be the helicopter Mom and go down for the event, and "train" her new husband. He has not seen a drug reaction or a collapsed lung. Time to bring him into the ranks of official caregiver!

[Sangye]

LOL You gotta do what you gotta do, Palmyra. Glad you're gonna hover....

[Palmyra]

Yep, ready and willing to train all troops. Put on the big girl/boy pants and get ready for a full lesson in all possible infusion reactions. Plus, I have the added benefit of a pre-infusion meal with my troops in fabulous Austin, TX.

Will it be tappas, Indian, Asian, with the addition of currey and wondeful peppers and spices? YES.
Add whisps of fabulous live inernational music in a cool breeze with hiking/biking trails ready to bust out in wildflowers galore....near spring fed rivers with lots of open minded individuals and Texas Mountain Laurel in full bloom?......yes, I do believe it will! Good karma to all...come join us if you can.

Cheers,
Momma Palmyra :-)