Rituxin Question

Just a bit of background - Completed my 4th infusion on July 9th, this was my second round of Rituxnin the first being in 2015 which “quieted” things down for over 2 years. About month and a half after this second round ended up in hospital with hypoxia of a questionable etiology although I was to found to have an elevated lactic acid so they added sepsis to my diagnosis. My repeat CT scan continued to show the nodules that were noted previously with the addition of more abnormal findings. While a pt I developed a bloody nose and just developed another one. I have been in touch with my physicians. My ENT could see no physical reasons for the bloody nose when I saw her after the bloody nose I had in Hospital. The bloody nose lasted a minute or two.

R/T - the Rituxnin it has been almost 2 months since completion of Rituxnin infusion and since I did not have bloody noses during my first initiation with this disease how long have folks that have had to deal with bloody noses with their GPA had them stop post Rituxin?

Thank you for any help with this question

Hi sister,

Sorry you are dealing with so much.. :(

Nose bleedings is an indication for WG activity: smoldering or flare.

Mine started on 2008, less then 2 months after my lungs started to be inflamed. From 2008 to 2013 the bleedings continued, also with crusting, until I developed a saddle nose. I couldnt bear Imuran. Mtx didnt work for me. For a year bactrim made it better but not much.

On 2013 I started rtx. It took me 2 rounds of rtx, 6 months between, and 9 months since I started rtx, to stop the nose bleedings and crustings.

In the next years I didnt have nose bleedings. I thought that there was nothing left from my nose to bleed :) after the flare I had on 2017 I have nose bleedings from time to time. My WG is smoldering most of the time.. lately I had more bleedings (this morning it was more dramatic). I will go for rtx at the end of the next month.

Usually it takes 3 months for rtx to work. So you still have some time to wait. Also bactrim might help with nose bleedings but it also takes 6 weeks to start working. Pred never helped my nose, not even while on 60 mg.

Hang in there.. you are supposed to feel better soon. Sending you prayers.

Thank you Alysia - your insight is very helpful. You have also dealt with so much - both physically and emotionally. You are truly a very kind and giving person with all the help and support you send to your fellow GPA folks. Peace and healing to you.