Rituxan maintenance

[MaxD]

I wonder how long it takes before peripheral B-cells start showing up after a single 1000mg infusion for maintenance therapy. There's quite a bit of variation from person to person, but I have no idea how large the variance might be. If folks share this info we might learn something new.

In my case, B-cells showed up 8 months after the first 4-round treatment, then 10 months after the 1st maintenance infusion. It's been 11 months since my last infusion and the B-cells are still at 0%. Although some docs follow a 6-month regimen, mine prefer to wait until B-cells show up.

[Jaha]

I really think it depends on the person and how well the treatment works for them. I'm sorry I don't have a good answer to your question. I am wishing you all the best that it works well for you.

[Middlesista]

Have not had B cell count checked for awhile - I think last checked in the summer and they were at O% and that was about 8 months since initial infusion

[jmq]

Hi,
I also have questions about Rituxin treatment.
I just started Rituxan treatment 2 weeks ago. I just had my second infusion yesterday. I am scheduled to have 4 infusions so I am half way there. I have not felt any symptom improvement yet. Dr. said it was a lot better than Citoxin treatment.

My kidneys and lungs have been affected but not too too bad yet. My worst symptom is the connective tissue / nerve pain symptoms in my feet, fingers, arms, face. Nerve symptoms include the following: major numbness/loss of feeling, tingling feet and hands - like permanent feeling of pins and needles (like when your legs are waking up from being asleep), a lot of pressure (like vascular pressure) in my feet, feet feel like I am dragging two rocks when I walk. I googled these symptoms and found they references to paresthesia and/or neuropathy. Neurologist said I had neuropathy but that we couldn't do anything until we get disease under control.

They are monitoring my blood work during treatment. I think they are looking at platelets and white cell count and stuff like that to make sure I don't have an infection or my immune system doesn't shut down.
My question is how do they monitor the effectiveness of the RTX treatment. What do they look for to make sure it's working?
What is this B-cell count your are talking about?
So far, I don't feel any improvement in my symptoms. I am really worried these nerve issues, if not addressed, are irreversible. They are really debilitating.

This is what my Dr said when I asked her how to
The way to monitor is usually following the symptoms and the inflammation markers as well as organ manifestations. Looking at the labs for kidney and urine. Labs are only part of assessing the improvement. ANCA numbers may or may not improve. Not necessarily a correlate to activity.

What have others experienced as far as when the Rituxin treatment starts making a difference?
I am on huge doses of prednisone (60 mg/day) to control the nerve pain symptoms. If I try to go down to 40mg, the symptoms worsen. Dr says we need to reduce prednisone ASAP but treatment won't kick in.
I am really frustrated.

Would love to hear if anyone else out there has this connective tissue kind of GPA. haven't seen anybody mention this kind.

Jeannette

[drz]

I think the doctors that treat Wegs share your doctor's opinion. Symptoms of active Wegs are most important, then inflammation markers and organ function, especially the kidneys. For me, my symptoms have often pre-dated the results of the lab work.

[Eduardo]

My doctor usualy says that clinical symptoms is the most important issue to evaluate Wegs disease. Besides of that, ANCA, urine and inespecific inflamation markers are secondarily important. Rituxam takes to me 45 to 60 days after last infusion to disapear all the symptoms. I whish you the best.

[jmq]

Omg! That's such a long time!
I don't think I can stand the nerve pain plus the side effects of the high doses of prednisone for that long.
What else can they do?

[jmq]

Would you care to explain what b-cells are and how they help me?

What blood work do they have to do to get this B-cell presence?

sorry I am very new to this disease but it's moving very aggressively on me.

Jeannette

[Eduardo]

Hi Jeannette! B-Cells are the problem of Weg disease. They produce ANCA antibodies that are inducer of endotheliun (internal layer of veins) inflamation. Rituxan destroys B-Cells than stops ANCAs production. After some time, it dependes on person to person, the bone marrow produces more B-Cells, that is a flare. Only one clone of B-Cells produces ANCA antibodie. I whish you yhe best.

[jmq]

How do you know the ANCA-producing B cells are being depleted? Is it a blood test?

[Eduardo]

I think there´s no way to determine only ANCA-producing B cells. The blood analysis I've been submit to shows the total linphocytes count and ANCA titering. Indirect way to show ANCA-producing B cells depletion.

[loisann11]

I have been getting Rituxin every 6 months for maintenance since 2014. I have no side effects and take nothing else. I do get a breathing treatment at time of infusion. I have blood tests done every 3 months. I am still confused as to why I am doing this. My labs don't show I need it and I can't really tell what a flare is. I don't think anyone has been testing my b-cells. I am 68 so I have plenty of aches and pains, get tired, and have a slight runny nose off and on. Would like to go longer than 6 months but Dr. leaves it all up to me. How do you decide when you need one? I know everyone is different. My kidneys and lungs were effected in the beginning so worry what a flare would be. Any ideas??

[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.

[me2]

Loisann11- My doctor has said to me that he would like to keep me on full treatment for two years that is not interrupted by a flare before thinking about backing off.

[jmq]

That’s totally consistent with what I’ve heard.

[gilders]

To answer the OP's thread -
I had an initial 4 doses of Rtx over a 6 week period. I then had a top up every 4 months for a further 18 months. In total I had 9 infusions over an 18 month period. The last infusion was January 2017. In December 2017 I had B cells back. The dr said that patients who have had a few doses of RTX don't get B cells for over 2 years. I was the exception as they reappeared after 11 months and I'd had more than what they would consider "a few doses" of RTX.

[Keith]

I had the initial 4 round RTX, then 2 rounds 6 months later, then 1 round 6 months later. I expect to be on every 6 months for a couple of years.

Our only misstep was weaning off pred too quickly. 60, 50, 40 then down to 30 in two week intervals. When down to 30, symptoms came back and had to jump back to 50. That prolonged overall time on high doses. Finally down to 2.5 a little over a year into it. I feel very fortunate and understand it is not an exact science.

Thanks to all posting regarding B cells. I wonder what we miss out on by not having them. Maybe just a little more susceptibility to colds. I’ll happily live with his over alternative.


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[loisann11]

Thanks so much for info. I had my first infusion in 2014, took the 4 week process. 1 each week. I also had my blood cleaned by that machine, I forget the fancy name for that. Was in hospital for 10 days with kidney issues. I have been doing Rituxin every 6 months since. I have gone 7 then get scared and do it again. I am under the impression that the infusion is immediate. My Dr tested before and after. I took prednisone for the first 6 months. Just to help the body heal. I got off as quick as I could. I had every side effect listed, not fun. I should have had one in mid June it but am waiting for a Dr. appointment July 13th to ask if needed.

[loisann11]

Just went to Dr. today and all is good. Labs are all normal. We have decided to wait till labs show a problem or I have signs of a flare. He explains that the CD20 part of my B cells gets wiped out by the Rituxin. He can do a test for that but does not use that as a normal marker. Mostly CRP, sed rate, and ANCA show if problem. Also urine tests to make sure kidneys are fine. It has been 7 months since last infusion. Most of my problems are over thinking every little "twinge" I have and wondering if it is a flare. My normal aches, pains, twinges are just my worrying too much and based on my weight, age, and in-activity. Hope it all works out for you.


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.