Possible flare?

[pberggren1]

Sounds like a flare to me. So glad you found us Rebekah. Ask your doctor to get you on Rituximab ASAP. That has helped me and many others. I'm very happy to hear you plan on finishing med school and specializing in Vasculitis. Do you know what sub specialty you might go into?

[rebekah]

Thanks! I'll be sure to tell my doctor about Rituximab... I think she was going to get me back on Cytoxan (not positive though), but I'll definitely have her look into this and consult with the other doctor (who has treated Wegener's before); I'm willing to do anything to help feel better. And from what I've read from many people on here it seems to have helped.
This might have caused me to stray a bit from starting med school, but I'd rather take some time off before starting to make sure my health is back... I'm just hoping that this little bump in the road allows me to still graduate in May... I'm so ready to be done with undergrad already!

[rebekah]

So glad to finally hear some good news. The doctors are saying if I can go the night without coughing up blood, I will start the Rituxan IV treatment tomorrow and then I can finally go home! I did some research on Rituxan and I see it can take about 6 hours for the treatment, which I don't mind since I can get some studying done, but can anyone who's been on this before offer input as to how often I will have to go in to get the treatment? It looks like the side effects aren't as bad as Cytoxan, but I liked that it was available as a pill for me to take (which is what I did). I talked to my doctor over the phone and discussed Rituxan, but didn't get all of the details... I'm sure I'll get them tomorrow when she stops by but I never was very patient. lol

[drz]

So glad to finally hear some good news. The doctors are saying if I can go the night without coughing up blood, I will start the Rituxan IV treatment tomorrow and then I can finally go home! I did some research on Rituxan and I see it can take about 6 hours for the treatment, which I don't mind since I can get some studying done, but can anyone who's been on this before offer input as to how often I will have to go in to get the treatment? It looks like the side effects aren't as bad as Cytoxan, but I liked that it was available as a pill for me to take (which is what I did). I talked to my doctor over the phone and discussed Rituxan, but didn't get all of the details... I'm sure I'll get them tomorrow when she stops by but I never was very patient. lol

My initial treatment with RTX was two sessions and that seems fairly typical but some get four sessions for their RTX trreatment. As to how often, that varies greatly. I only had the initial session, then was switched to CTX, then to generic Imuran.

[Psyborg]

So glad to finally hear some good news. The doctors are saying if I can go the night without coughing up blood, I will start the Rituxan IV treatment tomorrow and then I can finally go home! I did some research on Rituxan and I see it can take about 6 hours for the treatment, which I don't mind since I can get some studying done, but can anyone who's been on this before offer input as to how often I will have to go in to get the treatment? It looks like the side effects aren't as bad as Cytoxan, but I liked that it was available as a pill for me to take (which is what I did). I talked to my doctor over the phone and discussed Rituxan, but didn't get all of the details... I'm sure I'll get them tomorrow when she stops by but I never was very patient. lol

For most people RTX is considerably easier to tolerate than CTX, though some people don't tolerate it well. If it does work well you should have either 2 or 4 infusions and be in the clear for a while. Possibly a good while.

[rebekah]

It's been a very long four days, but I finally made it home a few minutes ago. I survived my first infusion of RTX, and I have 3 more to go; I'll go again next week for my next one. I did have the chills and some nausea during the infusion, so they gave me warm blankets to help. I'm glad they gave me some Benadryl beforehand, I ended up taking a nap and the first half flew by! So glad to hopefully be on my way to feeling better.

[pberggren1]

This is very good to hear.

[TommyG]

I had less side effects with RTX than CTX. More importantly It finally stopped the active disease in my lungs, ears and sinuses, which CTX did not. I do hope RTX works well for you. Make sure you put your health first. I took 2 years off at my college, now I'm back working full time. Make sure you tell your professors what going on. Most of us would be very understanding of your situation. Best wishes,

tommyg

[Jaha]

I'm glad that you are getting the right tx and that you are feeling better. If you have anymore reactions to rtx, they had me take tylenol and benadryl every 4 hours for a 24 hour period. I had my 1st one last year and do the 2 tx protocol. Great to hear you are at home
Jana

[rebekah]

Thanks everyone! I seem to be doing okay with RTX, though it's hard to tell since it's only been one day. I am nauseous, but I know this is due to the prednisone and RTX (this is a symptom I've grown used to while on treatment), thankfully my anti-nausea medicine is helping to keep it under control. But I also have a metallic taste in my mouth? Has anyone here heard of this as a side effect? I haven't read anything about it online... and now that I'm on my laptop I've been reading a little bit more of the discussions on here. I have a doctor's appointment Monday morning so I will discuss this with her if I still have it then. Thanks for the tip on taking Benadryl and Tylenol, Jana! I always keep those in the apartment and took it after reading your post. And I agree with taking some time off, Tommy, I think after I graduate in May if I get accepted into med school for this coming fall I'm going to take the year off to get my health back on track, because I know med school will bring a lot more stress than I have now, and I don't need another flare in the middle of a semester during med school.