Rituxan and tracheal stenosis flares

[im so blessed]

I spent much time yesterday-hours actually-on this forum trying to get answers to my nagging questions about this subject. Is rituxan really worth the risk when my flares have all been my stenosis in the last 2 years. I have been weighing this option for almost 2 years and honestly, im scared. I dont like the risks. And so we have to decide if its worth going for. We decided to go for it and my first one is tomoro. I am very nervous. I almost cancelled yesterday after i read a post on here about Dr Lebovics opinion on it. If i understand correctly he would say a stenosis takes on a mind of its own, and has nothing to do with whether your wg is active or not. Ok, so then why am i getting treatment for something that isnt flaring because of my wg? And then i found post of one person saying they kept having flares with their stenosis and rituxan is what finally put it into remission....so i guess i concluded everyone is different and i honestly dont think anyone knows for sure one way or the other...is that a wrong assumption? What are your thoughts? I wish i wasnt so scared of this treatment.

[blu4runner]

I have subglotic stenosis to the point I still have a trach tube due to the damage done to my trachea. I have consulted with Dr Lebovics about surgical correction to eventually get the trach removed but that will have to be at a later date. I am currently in a flare and have my 2nd rituximab infusion tomorrow at UPenn in Philadelphia. I drive from VA to Philly to see Dr Merkel and the rituximab has been a wonder drug when I have a flare. Personally I have been lucky and the side effects minimal from the rituximab for me. Best wishes on your treatment we are here to support one another

[im so blessed]

I have subglotic stenosis to the point I still have a trach tube due to the damage done to my trachea. I have consulted with Dr Lebovics about surgical correction to eventually get the trach removed but that will have to be at a later date. I am currently in a flare and have my 2nd rituximab infusion tomorrow at UPenn in Philadelphia. I drive from VA to Philly to see Dr Merkel and the rituximab has been a wonder drug when I have a flare. Personally I have been lucky and the side effects minimal from the rituximab for me. Best wishes on your treatment we are here to support one another
I have been very curious of your specific case...of course because i read some past post. So is your flare only in your stenosis? So Dr Merkel would support the idea of treating that with Rituxan? Are you also put on steroids first doing these flares? And how long until you feel the benefit of rituxan. Im srry all the questions,and you are very kind to take time to answer them!

[blu4runner]

It was good to talk with you. Keep us updated on how the treatment works for you!!

[MikeG-2012]

I spent much time yesterday-hours actually-on this forum trying to get answers to my nagging questions about this subject.

Isn't it great that this forum exists for that? Since there isn't one textbook for our disease, it is nice to have the resources this forum offers.


Is rituxan really worth the risk when my flares have all been my stenosis in the last 2 years. I have been weighing this option for almost 2 years and honestly, I'm scared. I don't like the risks. And so we have to decide if its worth going for.

With any medication there are risks, and with the govermental regulations and the potential for lawsuits, drug companies disclose any and every possible side effect on their labels. Have you ever read the prescription leaflets that come with your pills from the pharmacy? YIKES! If I believed that all the bad things that were printed in those leaflets, I wouldn't want to take any of them!


We decided to go for it and my first one is tomorrow. I am very nervous. I almost cancelled yesterday after i read a post on here about Dr Lebovics opinion on it. ... I wish i wasn't so scared of this treatment.

First of all, close your eyes (after reading this sentence), take a deep calming breath and breath. It is completely normal to be concerned/afraid/apprehensive about any procedure you've never had done before. When you get there, tell them that you are nervous and concerned. Ask questions, lots of questions, and if they won't answer them, or don't know the answers (within reason) have them get someone who can explain it to you.

After 12 infusions, my level of concern over RTX is very, very low. On almost all 12, I've walked out not knowing that I've had the infusions--other than the wrap or band-aid on my arm. Had the weather not been so crappy on June 3, I would have taken my motorcycle to the clinic the day of the infusion. A couple days after the infusion, I crash--pretty hard. The IV steroids hop me up and make me feel invincible, so I do things that I probably shouldn't, and always over do it the day of and day after. Then, my body revolts and it crashes on me. After a day of crashing, I feel better again.

Fortunately I don't have the stenosis part, so unfortunately I can't give any insight into how it works for that. I think there are others that can help you with those questions and Victor is always around to help folks, as you see here in this thread.

Drink lots of fluids today so that you are plenty hydrated and finding veins is so much easier with a hydrated body.

Good luck tomorrow and I hope it goes as well for you as it does for me.

[im so blessed]

Thankyou for your well wishes. My infusion went well, very uneventful. Benadryl made me sleepy and sulumedrol kept me awake so was kinda miserable feeling but i cant complain. I am very tired and hoping my ativan(that i use to sleep when on pred) helps tonight. As for results, we will see what it does for me.

[blu4runner]

Glad to hear the infusion went well Hoping for great results as a result of the treatment

[im so blessed]

Glad to hear the infusion went well Hoping for great results as a result of the treatment
Thankyou -and i hope yours went good yesterday too. I was thinking about you doing the same thing as me.I did have another question for you. What type of precautions do you take with the whole sickness thing after rituxan. I have been told as drastic as dont leave the house without a mask to just wash your hands often. Have you gotten any infections like they worry about with this treatment? I have 2 boys going to school in 2 weeks...not sure how we are to completely avoid it. And then you have to wonder if this new life rtx mite give me can be lived when your in a bubble.

[mich911]

Hi Blu4runner,
Hope your treatment went well yesterday. I was at UPENN yesterday also for my follow up appt with Dr. Sreih. If I knew I would have stop by to say hello:)

Michelle

[mich911]

Thankyou -and i hope yours went good yesterday too. I was thinking about you doing the same thing as me.I did have another question for you. What type of precautions do you take with the whole sickness thing after rituxan. I have been told as drastic as dont leave the house without a mask to just wash your hands often. Have you gotten any infections like they worry about with this treatment? I have 2 boys going to school in 2 weeks...not sure how we are to completely avoid it. And then you have to wonder if this new life rtx mite give me can be lived when your in a bubble.




Hi,
Hope your treatment went well yesterday. I have had two rtx treatments and my third is Monday. So far I've had no problems and have tolerated the treatments pretty good. Just very tired couple days later. I also have two children (almost 12 & 8) so I'm also worried about the germs when school starts back up but I haven't had any issues so far with sickness. Good luck & take care of yourself

[blu4runner]

I have not really taken any special precautions and have not had any problems that i am aware of. Basically I continus as normal as possible and just wash my hands often to keep them clean. I don't really wear any mask and or anything special.