Anyone only use rituximab for remission?

[mrtmeo]

I have not been able to find anyone who only used rituximab for induction to remission.
I have only seen people who had cytoxan first and then rituxan.

Anyone have success with only rituxan?
If so, how long did it take to reach remission?
Did you use a maintenance drug after rituxan?

[kaysee]

I was just diagnosed in April 2014. I was put on prednisone only until the insurance approved the rituxan infusions. I had my first rituxan treatments through June/July. Four treatments - one each weeks for 4 weeks. My kidney function went from 25% to 50% after the treatments and most of the blood test results returned to normal. We started to decrease the prednisone by 5 g every 7-10 days and mid August I was off prednisone for two weeks. I imediately had a flare up of the WG not being on any maintenance drug. I was told that rituxan can be adinistered only at 4 month intervals, so I am scheduled for those to start again Sept. 29. In the meantime I am back on prednisone (30 g) and was hospitalized for 4 days having pulse steroid infusions. Those are very high doses of steroid infused once a day. I had 3 days at 125 mg with not change to my kidney function. I then had 500 mg for three days and the kidney function started to improve. We are trying to reach remission with the rituxan so that I can get off the prednisone. I have had no other drugs for the WG to date. I have had to start Lisinopril for high blood pressure and a water pill which is not helping much.

[mrtmeo]

I was just diagnosed in April 2014. I was put on prednisone only until the insurance approved the rituxan infusions. I had my first rituxan treatments through June/July. Four treatments - one each weeks for 4 weeks. My kidney function went from 25% to 50% after the treatments and most of the blood test results returned to normal. We started to decrease the prednisone by 5 g every 7-10 days and mid August I was off prednisone for two weeks. I imediately had a flare up of the WG not being on any maintenance drug. I was told that rituxan can be adinistered only at 4 month intervals, so I am scheduled for those to start again Sept. 29. In the meantime I am back on prednisone (30 g) and was hospitalized for 4 days having pulse steroid infusions. Those are very high doses of steroid infused once a day. I had 3 days at 125 mg with not change to my kidney function. I then had 500 mg for three days and the kidney function started to improve. We are trying to reach remission with the rituxan so that I can get off the prednisone. I have had no other drugs for the WG to date. I have had to start Lisinopril for high blood pressure and a water pill which is not helping much.

Hi Kaysee,
It sounds like they tapered your prednisone too quickly.
Did they taper your prednisone due to ANACA and PR3 values?

In the trials they would taper the prednisone within 6 months of starting Rtx, but depends on flares.
Hopefully, the 2nd rtx will get u into remission.

My mom's timeline is similar to yours, but she is still on 10mg prednisone and her dr wants her on Imuran, but she is anemic and the imuran suppresses the bone marrow.
It sure seems like my mom's kidneys are in a flare too, but won't know until we get the lab work again.
She has not become ANCA negative, yet.

[WG mom]

Does it typically take more than one treatment series to realize results? My daughter completed the four infusions mid August. Her doc has reduced prednisone from 40mg to 20 (over a month period). She is having headaches which don't respond to traditional OTC meds and the doc says he can't prescribe something stronger because of her other meds. She's trying to tough it out because she really wants off the prednisone due to weight gain.
Perhaps we were naive in thinking the rtx would be a miracle drug.
So, anyone gone into remission after one series or do we need to look at another one in a few months?
Thanks.

[mrtmeo]

Does it typically take more than one treatment series to realize results? My daughter completed the four infusions mid August. Her doc has reduced prednisone from 40mg to 20 (over a month period). She is having headaches which don't respond to traditional OTC meds and the doc says he can't prescribe something stronger because of her other meds. She's trying to tough it out because she really wants off the prednisone due to weight gain.
Perhaps we were naive in thinking the rtx would be a miracle drug.
So, anyone gone into remission after one series or do we need to look at another one in a few months?
Thanks.

Hi WG Mom,
From all the studies I have read, it takes 3-6 months to reach remission.
My mom is 3 months off her first rtx induction and trying to reach remission, but it is a long wait.
If she doesn't respond by the 6th month or has a major flare before that, you can ask your dr for help in determining whether to do another treatment.
As far as headaches, could it be the prednisone reduction?
How long have the headaches been going on?
You could create a thread to find out if anything works for headaches.

[Bing505z]

Does it typically take more than one treatment series to realize results? My daughter completed the four infusions mid August. Her doc has reduced prednisone from 40mg to 20 (over a month period). She is having headaches which don't respond to traditional OTC meds and the doc says he can't prescribe something stronger because of her other meds. She's trying to tough it out because she really wants off the prednisone due to weight gain.
Perhaps we were naive in thinking the rtx would be a miracle drug.
So, anyone gone into remission after one series or do we need to look at another one in a few months?
Thanks.


I am in remission after one Rituxan series. My Doc took me off Pred' about a month after my last dose of Rituxan (was reducing every week during treatments). I responded very well to the treatment. As for the pain management, I used hydrocodone and toradol while using other med's without any problems. Just know this, everyone responds differently to treatments so it may take another month or so. I know it's difficult to stay positive during these tough times, but try and stay strong and encourage your daughter. I do hope she recovers soon.

[WG mom]

Thanks, mrtmeo. It helps to have a realistic timetable. I will take your suggestion and do a post about the headaches. Much appreciated.

[mrtmeo]

Hi Bing,
What were the indicators that you were in remission, ANCA, PR3?

[Bing505z]

Hi Bing,
What were the indicators that you were in remission, ANCA, PR3?


Vasculitis Speacialist uses these :
· Sedimentaion Rate-Westergren
· C-Reactive Protein, Quant
· Anca Panel (MPO, PR-3, C-Anca, P-Anca, andAtypical pAnca)
· CBC Panel with Differential/Platelet
· Comp. Metabolic Panel (14)
· Kidney Function
· Reports including Images from Lung Doc and from ENT

[mrtmeo]

Thanks Bing!

[kaysee]

My rhuematologist told me it is standard procedure to infuse again with rituxan after 6 months. I was scheduled to do so but had a flare up as soon as I was taken off of the prednisone. I have never had the cytoxin. I improved after the first rituxan treatments but apparently did not go into remission. They did not repeat the ANCA or PR3 test, but could tell as my kidney function was getting worse again. I am now doing my second round of rituxan - 4 months after the first. I am also back on 30 mg of pred.

Headache can be a side effect of the rituxin which is why I am always given tylenol before each treatment.

Karen, dx'ed April 2014

[mrtmeo]

Hi Kaysee,
I am glad u found the reason for the headaches and hope they go away after your next round of rtx.
I also, pray that your kidney function goes back to normal.
I am praying my mom's kidney function gets better too.
I still don't know which drug is better for overall kidney improvements.
However, cytoxan works faster than rituxan.

[MaxD]

I have not been able to find anyone whole only used rituximab for induction to remission.
I have only seen people who had cytoxan first and then rituxan.

Anyone have success with only rituxan?
If so, how long did it take to reach remission?
Did you use a maintenance drug after rituxan?

I was diagnosed last March (sinus, lung, roving joint pains), put on prednisone and had 4 infusions of RTX by early May. All numbers are down close to the normal range now, but it happened gradually (monthly PR3 went from 150 to 120 to 80 to 40 to 30 ...- 20 and less being normal). I'm down to 6mg prednisone and should be done by mid-Dec. Will have one infusion of RTX for maintenance before the end of the year. Other than steroid myopathy (withdrawal symptoms) and eustachian tube dysfunction (better now than at start) I've not encountered any issues. The plan is to use RTX for maintenance, esp. as it is more effective for sinus issues.

Good luck to you.

[mrtmeo]

I was diagnosed last March (sinus, lung, roving joint pains), put on prednisone and had 4 infusions of RTX by early May. All numbers are down close to the normal range now, but it happened gradually (monthly PR3 went from 150 to 120 to 80 to 40 to 30 ...- 20 and less being normal). I'm down to 6mg prednisone and should be done by mid-Dec. Will have one infusion of RTX for maintenance before the end of the year. Other than steroid myopathy (withdrawal symptoms) and eustachian tube dysfunction (better now than at start) I've not encountered any issues. The plan is to use RTX for maintenance, esp. as it is more effective for sinus issues.

Good luck to you.

Thanks Max.
It sounds like they check your levels frequently.
Did it take 6 months to normal or did u reach remission earlier?

[MaxD]

mrtmeao: I'm not sure if there is a standard definition for when remission is reached. Ideally, it would be when prednisone is eliminated and there are no clinical symptoms of active disease. I'm not yet down to 0 prednisone (another 10 weeks to go). Took 5 months to get close to normal on PR3 (but note that PR3 can remain high for some people even when they are in remission; this number cannot be used as an indicator of the disease if it doesn't go down with treatment). Most of my symptoms subsided when I started the prednisone. The repeat CT scan of the lung was clear 4 months after treatment.

I wouldn't generalize from experiences of a few people. I was lucky that my disease was caught early before any organ damage, and treated quickly. If it had taken a few more months to detect, I have no idea how quickly I would have responded to RTX.

[miracleshappen08]

RTX was an answer to prayer to me!! I had been on MTX for 5 years and my body was no longer accepting it so I was flaring up! I had a round in February and March and have been on MTX for remission holding. I'm starting in with some issues again so we are on top of it. I may need another round of RTX but everyone is different and this disease is different in everyone

[mrtmeo]

RTX was an answer to prayer to me!! I had been on MTX for 5 years and my body was no longer accepting it so I was flaring up! I had a round in February and March and have been on MTX for remission holding. I'm starting in with some issues again so we are on top of it. I may need another round of RTX but everyone is different and this disease is different in everyone

Rtx seems to work very well for relapses with Weg's.
It didn't work for remission for my mom who has microscopic polyangiitis and she gets sick on both imuran and mofetil which were working.
Going to see another neph to see if she can do low dose Ctx.

[annekat]

I would not expect RTX to bring someone to remission with one infusion, based on what I've read of people's experiences here. Maybe for some, but not for all or many. I don't think mofetil or imuran are usually used for that purpose in a patient with kidney involvement, although they appeared to have been helping. I think your mom needs more RTX, soon, or as you were suggesting, a good dose of CTX. The dosage is based on body weight and I would not suggest a dose lower than that. I'm speaking of the oral dosages, as I know nothing about the IV dosages.

[mrtmeo]

I would not expect RTX to bring someone to remission with one infusion, based on what I've read of people's experiences here. Maybe for some, but not for all or many. I don't think mofetil or imuran are usually used for that purpose in a patient with kidney involvement, although they appeared to have been helping. I think your mom needs more RTX, soon, or as you were suggesting, a good dose of CTX. The dosage is based on body weight and I would not suggest a dose lower than that. I'm speaking of the oral dosages, as I know nothing about the IV dosages.

Are you referring to one infusion of Rtx as one series of 4 infusions?
My mom had 4 infusions, one week apart.
I went to see another nephrologist who suggested doing a very low dose of Imuran to see if my mom tolerates that and dose every other day.
However, I am going to try a really low dose of Mofetil to see if she tolerates it because that seemed to be working.

[mrtmeo]

I talked to another nephrologist about rtx and he said rtx works very slowly.
He would not answer my question regarding taking another immuno while waiting for rtx to put you into remission.
My mom can't take the standard doses of mofetil or imuran because it makes her sick.
I think there must be some type of interaction between rtx and immune suppressants.
However, I am trying a much lower dose of mofetil to see if it can put my mom into remission.

I would try another round of rtx if I was confident it would help my mom's kidneys and lungs, but there hasn't been a remission with it, yet.
She is 5 months from first infusion and only some of the minor symptoms are gone.

[mrtmeo]

I found out that Rtx can work VERY slowly for some, so sometimes you need to help it along.
This would explain why my mom's lymphocytes are not always low.
She didn't tolerate 1gm of Mofetil, so I have her on 250mg and it seems to be helping.
I will work up if she can tolerate it.
Since Rtx is an immune suppressant, I think adding the standard dosings of other immune suppressants maybe too much.

[annekat]

Are you referring to one infusion of Rtx as one series of 4 infusions?
My mom had 4 infusions, one week apart.
I went to see another nephrologist who suggested doing a very low dose of Imuran to see if my mom tolerates that and dose every other day.
However, I am going to try a really low dose of Mofetil to see if she tolerates it because that seemed to be working. I don't know what I was referring to because I didn't know exactly what your mom had gotten and I'm also not that familiar with RTX, having never taken it. I've gotten that there are a variety of protocols used, and that they may be changing over time as docs become more experienced with RTX. It sounds like the 4 infusions a week apart would constitute a first round of infusions. I thought that maybe she'd be due for another round of infusions pretty soon, since the first one didn't have the desired effect, which I've gotten the feeling is not unusual. I've heard of people needing more than one or two go-rounds to see real improvement. I think quite a few are on some other immunosuppressant during or after getting RTX. The ones I can think of are on MTX, though I imagine the other meds could or would be used, too, and that some would not use them at all during this time, whatever the doc thought was appropriate in their case. I haven't heard that there's anything wrong with taking them together. I don't know about the dosages, except that I think 15mg/wk of MTX would be fairly standard and is at the low end of typical dosages. I think all the immunosuppressants can make people feel sick and sometimes it just takes some time to get used to them. A person should be getting lots of rest during this time and not try to do too much while feeling sick from the meds.

[mrtmeo]

I don't know what I was referring to because I didn't know exactly what your mom had gotten and I'm also not that familiar with RTX, having never taken it. I've gotten that there are a variety of protocols used, and that they may be changing over time as docs become more experienced with RTX. It sounds like the 4 infusions a week apart would constitute a first round of infusions. I thought that maybe she'd be due for another round of infusions pretty soon, since the first one didn't have the desired effect, which I've gotten the feeling is not unusual. I've heard of people needing more than one or two go-rounds to see real improvement. I think quite a few are on some other immunosuppressant during or after getting RTX. The ones I can think of are on MTX, though I imagine the other meds could or would be used, too, and that some would not use them at all during this time, whatever the doc thought was appropriate in their case. I haven't heard that there's anything wrong with taking them together. I don't know about the dosages, except that I think 15mg/wk of MTX would be fairly standard and is at the low end of typical dosages. I think all the immunosuppressants can make people feel sick and sometimes it just takes some time to get used to them. A person should be getting lots of rest during this time and not try to do too much while feeling sick from the meds.

Hi Anne,
It seems many will retreat with Rtx when they flare, but my mom has not gone into remission, yet.
My mom got nauseous, vomiting and diarrhea with Imuran and Mofetil.
She cannot afford to go a day without eating due to her anemia and low kidney function.
I have her back on low dose Mofetil and gradually adding in Mycophenolic Sodium which has a better tolerability.
When my mom was on the lower dose 500mg Mofetil, the blood in her urine stopped.
When she upped it to 1,000mg, she had trace blood in her urine and eventually got sick on it.

Both imuran and mofetil made her sick, but she was only on one ppi for GERD near the time she got sick on them.
I was thinking that it was the rebound acid reflux that may have caused this intolerability, but not sure yet.
Now, I have her back on 2 ppi's per day.

Rtx works very slowly and unfortunately for my mom, it only stopped the minor symptoms.
There was only days when she felt better and that was when she had Neutropenia (low neutrophils) but they came back a couple days later to above normal again and a few weeks ago when the mofetil kicked in.
With the mofetil, she was walking around the house without the oxygen a little, but still was very fatigued.

Her Nephrologist has pretty much given up on her and all the drs we have seen don't seem to care much either.
Her breathing has not improved and the pulmonogists here know nothing.
She can't go anywhere except to the drs in a wheel chair due to her breathing and fatigue.

[annekat]

I think docs do re-treat with RTX if the person has not gone into remission. In other words, they are still in their initial Wegs flare since the time of diagnosis, which is usually more severe than later flares. But it is a flare, nonetheless. If the flare settles down, they still may not be in remission. As we have said on here many times, remission is sort of a vague and subjective word. There is no magic point where a person is in a solid remission. Some docs may use the word more loosely or more conservatively than others. If not enough decrease in disease activity has occurred, and an amount of time has passed, I think it is not at all uncommon for people to have another round of RTX. I would think the docs would be looking at this for your mom. If they think RTX isn't going to work, then I think CTX would be the next to consider, but you say they don't think she can take it. I don't understand that if it might be the best crack at saving her life. And I'd like to hear some comments from those who have been on more than one round of RTX in the initial effort to control their disease activity.

You say the docs have given up on your mom. It seems to me you have given up on them, as well. It seems like you are acting as her doctor, deciding her dosages, etc. Maybe I missed something; are you a doctor? Who is prescribing her meds? I think you need a real vasculitis specialist for your mom, or a nephrologist who is very experienced in it and easier to work with than her current doc. I know I should have a doc who is more of a specialist, too, but I am doing much, much better than your mom, not because I'm necessarily getting better care, but because I have a much lighter case of vasculitis. Anyway, it makes me a little uneasy to think of your mom just going along with everything you say to do, as if you are a doctor, and not getting more involved in her own treatment and finding herself a really good vasculitis specialist. I feel bad for her if she is not capable of doing some of these things for herself. That being said, I think you are doing the best you can to find the best solutions for making her better. I just think you need another opinion on whether she is a lost cause, if that is the feeling you are getting from her current doc.

[mrtmeo]

I think docs do re-treat with RTX if the person has not gone into remission. In other words, they are still in their initial Wegs flare since the time of diagnosis, which is usually more severe than later flares. But it is a flare, nonetheless. If the flare settles down, they still may not be in remission. As we have said on here many times, remission is sort of a vague and subjective word. There is no magic point where a person is in a solid remission. Some docs may use the word more loosely or more conservatively than others. If not enough decrease in disease activity has occurred, and an amount of time has passed, I think it is not at all uncommon for people to have another round of RTX. I would think the docs would be looking at this for your mom. If they think RTX isn't going to work, then I think CTX would be the next to consider, but you say they don't think she can take it. I don't understand that if it might be the best crack at saving her life. And I'd like to hear some comments from those who have been on more than one round of RTX in the initial effort to control their disease activity.

You say the docs have given up on your mom. It seems to me you have given up on them, as well. It seems like you are acting as her doctor, deciding her dosages, etc. Maybe I missed something; are you a doctor? Who is prescribing her meds? I think you need a real vasculitis specialist for your mom, or a nephrologist who is very experienced in it and easier to work with than her current doc. I know I should have a doc who is more of a specialist, too, but I am doing much, much better than your mom, not because I'm necessarily getting better care, but because I have a much lighter case of vasculitis. Anyway, it makes me a little uneasy to think of your mom just going along with everything you say to do, as if you are a doctor, and not getting more involved in her own treatment and finding herself a really good vasculitis specialist. I feel bad for her if she is not capable of doing some of these things for herself. That being said, I think you are doing the best you can to find the best solutions for making her better. I just think you need another opinion on whether she is a lost cause, if that is the feeling you are getting from her current doc.

I have not indicated in way that I was dictating my mom's care.
I am following what her nephrologists have recommended, but her main nephrologist said, "I give up. Maybe see a Reumatologist and I missed something."

He is still doing her treating and I don't know where u think I am her dr treating her?

Her nephrologist said that he did not think my mom could physically handle the cytoxan due to her being so frail and having copd, on oxygen and with benzo withdrawal on top of it.
I think she handled the one week dose of cytoxan he gave her first, quite well.
Her last appt with him was a month ago and he didn't want to see her until 3 months.
She is seeing a rheumatologist Dec 3rd, so will see if there is another option.

He told us at the beginning of August that he was sure he could save her kidney function and that the creatinine should go down below 1.5 and if it didn't, he would be disappointed.
He forgot to give her the Epogen and let her go until she needed a blood transfusion again and the ER nurse pushed blood into her way too fast pushing her bp to 189/99.
They had to use lots of lasix to get out all the extra fluid and this all caused her kidney function to get worse.
When this happened is when he said he gave up which was only a few weeks after he said he could save her kidney function.

My mom, mentally, doesn't really understand what is going on or the disease.
She is struggling to exist on the couch.

We just went to see a new nephrologist that helped a friend and he said he thought she was in remission without ANY of her blood work, urinalysis or kidney biopsy info.
The hospital failed to fax her medical records over to the other one.
I was not impressed.

When someone is not self sufficient, drs tend to blow them off and this is what has been happening to her for years.
I don't think she can handle a trip to Mayo or Cleveland, so we are stuck here.

[annekat]

Sorry, Blake, I was a little hard on you. I don't know where you get the time to put all that you do into your mom's care and figuring out what to do when the doctors are not offering or following through on any solutions. I wish you could find one really good one who didn't have that attitude of giving up on her.

Thanks for filling me in on your mom's mental and physical condition. It's sad that it seems like just you and her struggling through this without much help or caring from anywhere else. Are there other family members or friends nearby at all who could be of any help? This seems like too much of a load to bear by yourself. And I will modulate my somewhat snide comment about you being a "doctor", for which I apologize, by saying that many of us have had the feeling from time to time that we have to be our own doctors, given the short shrift we get at real doctors' offices. For example, I regulate my own prednisone more than my doc would probably like, but I really don't care, since he sees me for 5 minutes every two months and I know a heck of a lot more about what is going on with me than he does.

I'm glad to hear you are taking your mom to a rheumatologist on Dec.3rd. Maybe this new doc will be a lot better, and I certainly hope so! I hope he or she has vasculitis experience and is willing to consult with specialists if need be, like someone from Mayo or CC. Maybe you can get another opinion on 1) whether your mom can handle CTX, since you say she handled the infusion of it quite well, and 2) whether maybe another round of RTX would be in order since the first one hasn't worked yet, and it's been 5 months; perhaps just one round wasn't enough and a second one would do the trick. If neither of those two options are recommended, then yes, others would have to be explored, but I would push for getting those two talked about first. Those are the two most recommended meds for anyone with vasculitis in the kidneys or any other major organ. I look forward to hearing how it goes with the new rheumy, and if it is not a good experience, I hope you will keep trying to find one who knows enough and will care enough to really try to save your mom.

[mrtmeo]

Sorry, Blake, I was a little hard on you. I don't know where you get the time to put all that you do into your mom's care and figuring out what to do when the doctors are not offering or following through on any solutions. I wish you could find one really good one who didn't have that attitude of giving up on her.

Thanks for filling me in on your mom's mental and physical condition. It's sad that it seems like just you and her struggling through this without much help or caring from anywhere else. Are there other family members or friends nearby at all who could be of any help? This seems like too much of a load to bear by yourself. And I will modulate my somewhat snide comment about you being a "doctor", for which I apologize, by saying that many of us have had the feeling from time to time that we have to be our own doctors, given the short shrift we get at real doctors' offices. For example, I regulate my own prednisone more than my doc would probably like, but I really don't care, since he sees me for 5 minutes every two months and I know a heck of a lot more about what is going on with me than he does.

I'm glad to hear you are taking your mom to a rheumatologist on Dec.3rd. Maybe this new doc will be a lot better, and I certainly hope so! I hope he or she has vasculitis experience and is willing to consult with specialists if need be, like someone from Mayo or CC. Maybe you can get another opinion on 1) whether your mom can handle CTX, since you say she handled the infusion of it quite well, and 2) whether maybe another round of RTX would be in order since the first one hasn't worked yet, and it's been 5 months; perhaps just one round wasn't enough and a second one would do the trick. If neither of those two options are recommended, then yes, others would have to be explored, but I would push for getting those two talked about first. Those are the two most recommended meds for anyone with vasculitis in the kidneys or any other major organ. I look forward to hearing how it goes with the new rheumy, and if it is not a good experience, I hope you will keep trying to find one who knows enough and will care enough to really try to save your mom.

Yes, you are absolutely right that when we have a disease like this, we have to be our own dr.
Only we know our own body and how it responds to meds and can taylor it for our own good.
Drs don't see us weekly, but at the most, monthly, so alot can happen in a month.

I thought we had a dr that really cared about her care, but I guess I was wrong.
I sent him a link to the Vasculitis Foundation experts where he can consult with for FREE.
He is the type of dr that only works by himself and doesn't trust anyone else to monitor his patients.

From all my readings, and talking with others, most people go into remission around the 3rd month from treatment.
If they don't go into remission by the 6th month, they try something else.

I think my mom would do okay on Cytoxan as long as I can get her to drink enuf water.
I think she would also have to go back on high dose prednisone again with Cytoxan, but it causes really bad side effects with her.

Rituxan did work to get rid of her Peripheral Ulcerative Keratitis (right eye) and swelling in the feet, but those are minor compared to her lungs and kidneys.
Her nephrologist cannot get the actual ANCA and MPO levels, just whether it is positve or >8 and this makes it difficult to see if anything is happening. It call comes down to her kidney function.
I am hoping the Mofetil starts working because there is a trial that showed it was effective at inducing remission in MPA.

The stress on me with this is running me down pretty bad.
She doesn't like to sleep alone in the living room, so I sleep on the floor on an air mattress and get woken up all night long.
I wish I could just take her disease, so she could get some rest and feel good for once.

[annekat]

Well, if the new rheumy seems to be vasculitis savvy, I would still ask about the RTX. What you read may be different than what I've seen on this forum. I haven't seen many who said they went into remission in 3 months, regardless of what med they were on. We need some feedback from those here who have been on RTX more than once. I would think 6 months would be too long to wait before trying more RTX, and any amount of time is too soon to give up on it. If nothing else is working, or she can't take CTX, it is worth a shot. If the rheumy is a good one, he or she will really listen and pay attention to the details of your mom's treatment so far and the time intervals involved and would then mention any possibility of retrying RTX without you even having to ask, I'd think. But unfortunately, I've found that docs don't thoroughly study people's charts or ask enough questions and we have to find ways to bring things up ourselves.

Maybe you could start a new thread asking members here about their RTX experience, and whether if it didn't work the first time they were given another round, and if so, if it worked. It seems to me that people's experiences with RTX on here have been all over the map and we can't make a blanket statement about time intervals, repeating treatment, whether they had never gone into remission or had done so and then flared, whatever. I don't think not having gone into remission within a few months is a good reason not to try RTX again. But hopefully the rheumy would be able to say that with more authority.

As for CTX, I understand the difficulty of getting someone to drink more water, and that is a concern. I think that is less true with infusions because they are not for days and months on end like the oral, and she'd be getting IV fluids, too. But I'm not sure that she'd need high dose pred any more than with any other med, although I agree it is usually given if disease activity is high. But it might not be imperative that she be on a high dose if she is not on one now. I don't think it would negate the effectiveness of the CTX for her not to increase the pred. (I'm sort of assuming that she is on at least some pred now.) Another Q for the rheumy.

As for Mofetil, you have done a lot more studying than I could ever begin to, so if that has been found to work for MPA, that is good. I would hope the rheumy would have something to say about that, too. How about RTX and Mofetil together? Good luck on the 3rd. And I'm sorry for the stress you are going through. I wish someone could give you a break and sleep on the air mattress in your place sometimes.

[mrtmeo]

Well, if the new rheumy seems to be vasculitis savvy, I would still ask about the RTX. What you read may be different than what I've seen on this forum. I haven't seen many who said they went into remission in 3 months, regardless of what med they were on. We need some feedback from those here who have been on RTX more than once. I would think 6 months would be too long to wait before trying more RTX, and any amount of time is too soon to give up on it. If nothing else is working, or she can't take CTX, it is worth a shot. If the rheumy is a good one, he or she will really listen and pay attention to the details of your mom's treatment so far and the time intervals involved and would then mention any possibility of retrying RTX without you even having to ask, I'd think. But unfortunately, I've found that docs don't thoroughly study people's charts or ask enough questions and we have to find ways to bring things up ourselves.

Maybe you could start a new thread asking members here about their RTX experience, and whether if it didn't work the first time they were given another round, and if so, if it worked. It seems to me that people's experiences with RTX on here have been all over the map and we can't make a blanket statement about time intervals, repeating treatment, whether they had never gone into remission or had done so and then flared, whatever. I don't think not having gone into remission within a few months is a good reason not to try RTX again. But hopefully the rheumy would be able to say that with more authority.

As for CTX, I understand the difficulty of getting someone to drink more water, and that is a concern. I think that is less true with infusions because they are not for days and months on end like the oral, and she'd be getting IV fluids, too. But I'm not sure that she'd need high dose pred any more than with any other med, although I agree it is usually given if disease activity is high. But it might not be imperative that she be on a high dose if she is not on one now. I don't think it would negate the effectiveness of the CTX for her not to increase the pred. (I'm sort of assuming that she is on at least some pred now.) Another Q for the rheumy.

As for Mofetil, you have done a lot more studying than I could ever begin to, so if that has been found to work for MPA, that is good. I would hope the rheumy would have something to say about that, too. How about RTX and Mofetil together? Good luck on the 3rd. And I'm sorry for the stress you are going through. I wish someone could give you a break and sleep on the air mattress in your place sometimes.

Alot of good questions, but never get a chance to ask them all.
The drs here usually only let u ask about 5 and then send u out the door.
My sister has offered to sleep here in my place but I can't ask anyone to do that who is working as much as her.
Maybe I will start a thread asking about people's experience with going into remission.

Also, her nephrologist said if she couldn't tolerate the mofetil that another round of Rtx might work, but he didn't think it would be covered by her insurance.

[annekat]

Alot of good questions, but never get a chance to ask them all.
The drs here usually only let u ask about 5 and then send u out the door.
My sister has offered to sleep here in my place but I can't ask anyone to do that who is working as much as her.
Maybe I will start a thread asking about people's experience with going into remission.

Also, her nephrologist said if she couldn't tolerate the mofetil that another round of Rtx might work, but he didn't think it would be covered by her insurance. Oh, I know. It is always up to the patient to try to squeeze the questions in before the doc puts up a wall. And good luck getting a real answer to any of them. It should not be that way. I know there are some good docs out there who are not this way, but it is hit or miss trying to find them. I can only hope the rheumy you will see is better than most in that way, as well as actually knowing something about vasculitis and MPA. Best of luck, and hoping that you and your mom get out of the woods with this.