Originally Posted by
jmq
Hi,
What you describe is what I have and go through. I am 56 years old. My disease started in my lungs and they diagnosed it pretty quickly (in about 9 months). It was also affecting my kidneys and connective tissue. Because of the connective tissue impact, it left me with pretty bad neuropathy in my legs and feet and milder in my hands.
I do also get the same Rituxan infusion every 6 months. Started last year. Just had my third one. First one was a double dose and the second and third have been single doses (preventive measure). My blood work looks ok. My joints hurt a lot though. Doctor wants me to take prednisone to help with joint pain but I refuse. I was on such a high dose of prednisone, it did terrible things to my body. I am so scared to take prednisone that I prefer to withstand a lot of pain. I take a lot of Tylenol, sometimes Ibuprofen and when it gets really bad, Tramadol for my joint pain. I try not to take too much Ibuprofen bc it's bad for your kidneys and no more than 2 Tramadol pills a day. I do get runny noses as well and go through bouts of extreme tiredness. Not sure what that means.
I am in what the doctor call a "drug-induced remission". They have told me that after 2 years they try to stop them and if I don't have a flare, then it means I am in a true remission.
Now, infusions take between 2-4 months to work so if you wait until your blood work shows the flare and/or you start having symptoms, it might be too late for your body to recover as you can go into organ failure while you wait for the infusion to kick in. My first infusion took between 3 to 4 months. I was on a very high dose of prednisone while we waited for the infusion to kick in. It took forever.
So, you always want to be ahead of the flare. They do the infusions every 6 months because it takes around 9-10 months (don't quote me on that) for your body to re-make those bad cells and you don't want to wait until they are re-generated. I may not be explaining it in a very scientific way but I think that's the gist of it. You could stop the infusions and see what happens but you always risk going into a flare and compromising your organs. You have to be very careful. That's probably why your doctor is saying it's up to you. I imagine they don't want to feel responsible if you go into a flare as a result.
I haven't been taking infusions that long so I am not a good candidate to try it stopping them so I cannot tell you what that is like. I suggest you go to one of the Vasculitis centers (google them) and consult with a Wegener's specialist. I've been to the Cleveland Clinic for consultation twice. . Those doctors know a lot more about Wegeners since they see more Wegeners patients that your typical rheumatologists or nephrologists or whatever other specialist you might see. I would trust them to recommend if you are a good candidate to stop the infusions.
That's what I would do before stopping the infusions. Feel free to ask any other questions. This is an awesome group. I would be interested in knowing if anyone in this group has been able to stop Rituxan infusions and is in a constant, true remission. It would be very encouraging for others to know that it's possible. Good luck and feel free to stay in touch.