Rituxan & Ear Pain- How long for Rituxan to work?
Posted , 7 users are following.
Hi all! How long does it take for rituxan to work and for you to feel better? I have Wegeners and have been dealing with flare ups in my ears and sinuses that are extremeley painful and excrutiating that last two years. I have been fluctuating with my prednisone doses (ranging from a high of 60mg) to deal with the pain and to bring down the inflammation from the flare up. I just had two rounds of Rituxan in September & October 2016, However, I am still getting flare ups in my ear/sinus. I was finally able to taper down from the prednisone (first time I am completely off prednisone and not on any dose in last 2 years!). However, my ear feels hot inside and slightly inflamed. How long does it take for the Rituxan to work? I haven't been able to be physically active for over a year and everytime I get my blood pumping and I sweat, I get another flare up and am in pain for days in my ear. Does anyone else have this problem also?
Wishing everyone well!
0 likes, 20 replies
bkrcat jemmalyn84
Posted
My doctor told me it can take 3 months for the Rituxan to work. Guess it is very slow acting. I have had one series of it - 1 dose a week for 4 weeks and have not shown much improvement. I am scheduled to have anothe go round at a higher dose next month, but only 1 day a week for 2 weeks.
This disease seems to be affecting my nasal passages more than my sinuses. It is awful when my nose gets so stuffed up. Only thing that seems to work when I get this way is using a neti pot. What comes out of my nose is so gross - very green and crusty.
I, too, am being tapered down on the prednisone. Started at 10mg and back in June of 2016 and am now down to 4mg. The doctor wonders if perhaps some of my shortness of breath could be due to the pred.
I seem to have hot flashes, but not as bad as what you are describing. When this first started I could tell when the flares were coming and now I am at the point where I cannot. I just can't quite get a grip on what is going on. Some days I am extremely fatigued and don't feel like doing much. I also started out with extreme muscle pain that along with the shortness of breath is the worse part for me, but this nose congestion is pretty awful too!
wendy36478 jemmalyn84
Posted
The pity parties are totally understandable, i do not have this disease myself but as the main support system for someone who does....i have my own pity parties🙈my brother was diagnosed with WG four years ago this year, he is 23 now and has had 2 rituxin cycles (suggested by our prof. that he get the rituxin every 6 months, he has another cycle coming up now in Feb) they drastically improved 'side effects' he has from the disease but i can tell you it did take a long while to show those improvements. As for the sinus issues he had to have rhinoplasty surgery, which helped tons, he still has an issue every now and then but not nearly as close to how bad his sinuses were before.
Hope with helps a little and best wishes