ANCA negative, what month?

[mrtmeo]

I would like to know how long it took for people to become ANCA negative after the start of their treatment.

My mom is nearing her 3rd month since Rtx and she is still ANCA positive.

[Dirty Don]

Showed signs of moving after 3 mos, took nearly 6 mos to get it down to -.

[mrtmeo]

Hi DD,
were u on rituxan or cytoxan?

[Dirty Don]

Neither, mtx.

[drz]

Showed signs of moving after 3 mos, took nearly 6 mos to get it down to -.

I think mine was a bit slower and it took twice as long to reach normal range as it did to show improvement. I would guess mine was about 4 or five months to register good improvement and 8-10 to reach normal limits. But I started with one of the highest numbers they had ever seen too so improvement for others might be a lot quicker.

[drz]

Hi DD,
were u on rituxan or cytoxan?

Both IV to start and then oral CTX for months.

[mrtmeo]

I think mine was a bit slower and it took twice as long to reach normal range as it did to show improvement. I would guess mine was about 4 or five months to register good improvement and 8-10 to reach normal limits. But I started with one of the highest numbers they had ever seen too so improvement for others might be a lot quicker.

Are you referring to the pr3 or anca numbers?

[mrtmeo]

Both IV to start and then oral CTX for months.

Did you do the rtx an ctx for a flare after you hit remission with mtx?

[drz]

Did you do the rtx an ctx for a flare after you hit remission with mtx?

No, I had RTX IV first a couple times but it works slower and I was too sick to hang on long enough for it to work so they began CTX IV but I had a bad reaction to CTX IVs so they moved to oral since it is easier to adjust the dosage on an ongoing basis so it was safer for me as well as also being considered more effective than IV's according to my Weg treatment team.

[drz]

Are you referring to the pr3 or anca numbers?

My doctors just used the term ANCA scores. I would guess they this meant all aspects of ANCA including the the antigens like pr3. They still just refer to my ANCA numbers as being within normal limits. My guess is if my scores were abnormal they might break it down to explain what is now again out of normal range.

[annekat]

My ANCA at dx was just barely positive, and I don't think anyone ever tested it again, as all my other markers showed I was recovering. Negative or barely positive ANCA scores are not unheard of with WG. I don't know why. I was definitely sick with WG. I started on CTX, never had RTX, and am now on MTX.

[mrtmeo]

No, I had RTX IV first a couple times but it works slower and I was too sick to hang on long enough for it to work so they began CTX IV but I had a bad reaction to CTX IVs so they moved to oral since it is easier to adjust the dosage on an ongoing basis so it was safer for me as well as also being considered more effective than IV's according to my Weg treatment team.

Yes, my nephrologist also said the oral form of ctx was more effective than IV.
I thought the ctx worked slower and this is why many who didn't respond to ctx, were given rtx where they responded quickly?
My mom's lymphs went down after the 2nd of 4 rtx infusions which is supposed to show that it is working.
However, she is entering her 3rd month and is still positive.

[annekat]

Nope, CTX works faster than RTX, though neither works immediately. High dose pred is what brings down the inflammation fastest, but we need an immunosuppressant along with that to stop the disease activity. RTX may be more effective in the long run than CTX, but I'm not sure, as it seems many people need repeated treatment with it over time.

I would worry less about the ANCA score still being positive and more about the kidney numbers not improving. It is good that she has seen improvement in her lymphs, though... that is encouraging. I've never had RTX and am not knowledgeable about which things typically show improvement first. To me, it would make sense to hit someone who is severely ill with some CTX and high dose pred to give things a kick start, and then administer the RTX as a more long term treatment to avoid having to take too much CTX. But as we all know, I am not a doctor!

[mrtmeo]

Nope, CTX works faster than RTX, though neither works immediately. High dose pred is what brings down the inflammation fastest, but we need an immunosuppressant along with that to stop the disease activity. RTX may be more effective in the long run than CTX, but I'm not sure, as it seems many people need repeated treatment with it over time.

I would worry less about the ANCA score still being positive and more about the kidney numbers not improving. It is good that she has seen improvement in her lymphs, though... that is encouraging. I've never had RTX and am not knowledgeable about which things typically show improvement first. To me, it would make sense to hit someone who is severely ill with some CTX and high dose pred to give things a kick start, and then administer the RTX as a more long term treatment to avoid having to take too much CTX. But as we all know, I am not a doctor!

Yes, Anne, her nephrologist said just that. He did the ctx to help it along, but also, because he wasn't sure her insurance would cover the rtx.
We told him that we would pay for the first rtx until the insurance would pay because it had fda approval for mpa, but he wouldn't do it.
With rtx, b cells start to repopulate around the 6-12 month mark and this is where some will flare, but I have heard of people getting the rtx every 4 months due to flares.

When my mom had leukopenia (almost no neutrophils) she felt so much better, but it only lasted a day and they repopulated quickly, fortuneatly, after stopping the Imuran because it was suppressing her bone marrow too much.
It is the hijacked neutrophils that are doing all the damage on my mom and when those go to a normal level, I think that will mean remission for her.

[Mas78]

Mrtmeo,
I was anca positive for a number of years after I was Dx'd. I, like some others had a very high number at first. But as I recall my numbers were dropping soon after treatment started. I still had a low anca number for a number of years after I was off treatment and it was monitored every 6 months. Then at some point I had a zero anca, last month at a checkup my labs came back with a low anca, overall I don't feel any different so my old rhumy isn't concerned yet and made a Checkup appointment for me to see him again just incase.
the thing I remember my doctors at the time seemed more concerned with how I "felt" and used my labs in conjunction with that.
I started out on 350mg of cyoxin daily.

[annekat]

Mrtmeo,
I started out on 350mg of cyoxin daily. Wow, that is a high dose of CTX to be on!

[MikeG-2012]

Mine was negative right after initial treatment (CTX and HIGH DOSE PRED!) and has been negative since then--even through a nasty flare-up last year.

[mrtmeo]

Mine was negative right after initial treatment (CTX and HIGH DOSE PRED!) and has been negative since then--even through a nasty flare-up last year.

That sure is fast!

[mrtmeo]

My ANCA at dx was just barely positive, and I don't think anyone ever tested it again, as all my other markers showed I was recovering. Negative or barely positive ANCA scores are not unheard of with WG. I don't know why. I was definitely sick with WG. I started on CTX, never had RTX, and am now on MTX.

Hi Anne,
Do you remember if the did the PR3 test with the ANCA and what the value was?

[annekat]

Hi Anne,
Do you remember if the did the PR3 test with the ANCA and what the value was? Sorry, I don't know if they did the PR3. I was pretty dazed and confused at that point and only heard from my doc that my ANCA was so low he doubted I had WG. He was wrong. Someday I'd like to get a copy of all my records from the hospital where the initial tests were done during an overnight stay. The only other thing I remember was that my SED rate was over 100 at time of dx, which was a little later, and I don't know what other tests were done at that time.

[mrtmeo]

Sorry, I don't know if they did the PR3. I was pretty dazed and confused at that point and only heard from my doc that my ANCA was so low he doubted I had WG. He was wrong. Someday I'd like to get a copy of all my records from the hospital where the initial tests were done during an overnight stay. The only other thing I remember was that my SED rate was over 100 at time of dx, which was a little later, and I don't know what other tests were done at that time.

Hi Anne,
Some hospitals have an online mychart where you can view your records.
I keep track of every test for my mom.

[annekat]

Hi Anne,
Some hospitals have an online mychart where you can view your records.
I keep track of every test for my mom. I don't think this one does, last I knew. I asked them once and they said no, due to protecting patient privacy, which I think is BS. But I can get them by going to the medical records office. It is a little different when you are the patient. I had no one looking after me like your mom does. She is lucky to have you. I was too sick to be thinking about all those things and just focused on getting lots of rest, taking the meds, and feeling better.

[mrtmeo]

I don't think this one does, last I knew. I asked them once and they said no, due to protecting patient privacy, which I think is BS. But I can get them by going to the medical records office. It is a little different when you are the patient. I had no one looking after me like your mom does. She is lucky to have you. I was too sick to be thinking about all those things and just focused on getting lots of rest, taking the meds, and feeling better.

Hi Anne,
I am so sorry that you don't have someone to help you.
It is so sad to see so many like you that have to deal with all this stuff yourself.
My mom is lucky that I don't have a job and can spend 24/7 with her, otherwise, she would never had made it.
Thank God for forums like this to help people sort thru how to deal with this disease.

[annekat]

Hi Anne,
I am so sorry that you don't have someone to help you.
It is so sad to see so many like you that have to deal with all this stuff yourself.
My mom is lucky that I don't have a job and can spend 24/7 with her, otherwise, she would never had made it.
Thank God for forums like this to help people sort thru how to deal with this disease. I have friends and family members who could help me if in dire need. But not someone who could do it on a daily basis, as you do for your mom. At this point, your mom is in worse shape than I am, so she needs someone more. Even when I was really sick, I had no kidney involvement, and the meds did help me fairly soon, and there weren't so many of the ups and downs that you and your mom are experiencing. So thank God that she has you, and that I was able to manage without someone keeping daily tabs on me. You are so right about the value of this forum. I feel it has been a lifesaver, both physically and mentally.

[MikeG-2012]

That sure is fast!

My ANCA was never really high, just elevated, to begin with.

I am further proof that a negative ANCA test is NOT a definitive answer to whether or not a flare-up is in progress!!!