Its been a long time !

[im so blessed]

Hi all ! Ive missed you guys. Honestly i got lossed in life i guess. I was without internet for half a year, and then we moved this past march...Anyway i hope your all doing well. As can be. Im not sure when i posted last. But ive had wegeners since 2001. Dxed at age 17. been doing imuran and methotrexate for remission, and adding pred during flares. This seemed to work ok except for the last year and a half. ive gone on and off pred 3 times. I am currently taking 40 mgs again...after haveing worked off of 40 since february. I know, i wonder with u why things arent being managed differently. I lost my dr who had been with me since the beginning. And when another one took over 2 years ago, things changed. Im heading to an appointment this afternoon to discuss rituxan-again. ive never had it, we have only discussed it and i guess it scares me. my main flares have been my tracheal stenosis. People seem to think it might help but it might not. I guess im a sis, and i have kids to raise...any encouragement from you guys ? I know i need to have blood work, get some vaccinations and see that insurance covers it...but this afternoon i have to actually make a decision to go ahead with it. I know the risks are not pretty. But i also know once im on the other side of my first treatment, it will be ok. Just rambling...somewhere that i know im understood. Thanks guys !

[little sister]

Diagnosed May 2015. Had 4 infusions of rituximab (1 weekly for 4 weeks) in July 2015. Also treated at same time with high dosage Prednisone because there is a long period of time before you know if rituximab is successful. Officially in remission in Dec 2015 at which time I started methotrexate for remission and began weaning off Prednisone. The infusions were simple but they did take most of a day. The first time I went, they administered it very slowly to make sure there wasn't an allergic reaction. I was also always given an antihistamine just in case which had the added benefit of causing me to sleep through the first few hours! I never had any side effects during or after the infusions. And of course, I'm thrilled with the results. Based on my experience I say do it!

[Hammy8241]

Rtx has worked for me - I was a bit scared when I had my 1st armful in case I had reactions, but no problems for me. Little/no side effects either. Rtx enabled me to get off Pred and all other meds. I only have the Rtx and that is likly to stop soon too. Mtx did control the WG but Rtx has given me my life back again. I had 4 yrs Mtx with side effects and just living, 2 yrs Rtx and living the dream - your choice

Good luck
:)

[MikeG-2012]

I've had 12 RTX infusions now, and will continue to have them as long as the insurance pays and/or the FDA creates a protocol of when to stop. No issues so far, and despite setbacks that are un Wegs related, I am doing well.

[Pete]

I've had three courses of rtx with little trouble. I'm just a little extra tired the day after treatment, but I still can do what I need to do. Getting ready for another course next month.

I'm leading the life now I did pre-wegs.

[im so blessed]

Thankyou peeps for all ur kind responses. We are proceeding with rituxin. My dr thinks it will be 3 weeks until it all comes together. Do any of you get vaccines before ur infusion?I mean, my dr wants me to have a pneumonia vaccine now so it builds up. Also, do they do any special bloodwork day of just to be sure no infections are brewing? And-how do you deal with the infection risk? meaning do you just not go anywhere for 3 months until things are built back up? She told me if my kids get sick they should stay somewhere else until they get better ??? She gives rituxin to RA patients-but says she isnt treating any wegeners pts now. She has in the past. So many worries...but it will pass. I dont think anyone likes the unknown.

[Pete]

Talk to your doctor about pre-treatment blood work. You may need to get a TB test if you haven't had one recently.

[MikeG-2012]

Thankyou peeps for all ur kind responses. We are proceeding with rituxin. My dr thinks it will be 3 weeks until it all comes together. Do any of you get vaccines before ur infusion?I mean, my dr wants me to have a pneumonia vaccine now so it builds up.

I too had a pneumonia vaccine. You want to avoid any live vaccines after the RTX treatment. Dead culture vaccines like the flu vaccine are usually OK. Check with your doctor.


Also, do they do any special bloodwork day of just to be sure no infections are brewing? And-how do you deal with the infection risk? meaning do you just not go anywhere for 3 months until things are built back up? She told me if my kids get sick they should stay somewhere else until they get better ???

I think she's being cautious, and in some ways I agree with her. I've had my students that work for me come in with nasty cold and sometines flu bugs. I am just extra careful when around them. I wipe down keyboards, mice, counters, etc with disinfecting wipes, and spray Lysol after they leave for the day. You do not have to paranoid, but be cautious--wash hands frequently, sanitize, etc.


She gives Rituxan to RA patients-but says she isn't treating any wegeners pts now. She has in the past. So many worries...but it will pass. I don't think anyone likes the unknown.

I don't like the unknown either, but sometimes you have to have faith in your doctors and providers. I will say that you have to educate yourself on YOUR disease. Mine is different from yours and yours is different than everyone else.

Take care, and nice to see you're on a path for treatment once again.

[vdub]

I'm leading the life now I did pre-wegs.
That's real encouraging, Pete!