Lost all patience

[mrtmeo]

I finally, lost my patience with this non response of MPA by the drugs my mom has taken.
She had the best response with an IV Cytoxan one week dose on her kidney function in June 12, 2014.
Her Creatinine went from 3.3 to 1.9 by the end of the 2nd week.
Then, she went on Rituxan (June 24, 2014) and the best her creatinine went to is 1.8.
She has been on mofetil at a dose of 750mg-1gm which is the suggested range and she doesn't tolerate the 1gm dose daily and she still has high inflammaiton factors and pos ANCA.

Sed rate 35 (normal range 0-20)
C-rp <.5 (normal range 0-.8)
RF 28 (normal range 1-10)
Creatinine 1.8 (normal range .6-1.3)

By now, her creatinine should be showing some improvement.
I found out that in Israel, they don't use Rituxan for MPA because it doesn't work for MPA.
Both my mom's Nephrologist and Rheumatologist was surprised that my mom had little improvement with Rituxan.
I have, yet to find anyone that has MPA and renal failure have success with Rituxan.

She has lung involvement and unconfirmed GI involvement, so I think the cytoxan could put this disease in remission and Mofetil could maintain after. I don't know why Cytoxan was not tried much earlier, but she is almost 8 months from her first treatment with little response on a life threatening organ.

[renidrag]

Cytoxin is very toxic for long term use, comes with the threat of bladder cancer. The old risk reward thing. Most of us that have taken CTX drank a ton of water to move things along, especially to go at night and not let the drug rest in us. I took mine in the AM and still drank water up to bedtime to ensure movement. It is not recommended for use longer than six months though some here have been on longer. I was on for 10 months. I would definitely ask the Docs about it, maybe they thought they hit it hard enough the first time with the IV. Hope things get better for you and your Mother.
Dale

[mrtmeo]

Cytoxin is very toxic for long term use, comes with the threat of bladder cancer. The old risk reward thing. Most of us that have taken CTX drank a ton of water to move things along, especially to go at night and not let the drug rest in us. I took mine in the AM and still drank water up to bedtime to ensure movement. It is not recommended for use longer than six months though some here have been on longer. I was on for 10 months. I would definitely ask the Docs about it, maybe they thought they hit it hard enough the first time with the IV. Hope things get better for you and your Mother.
Dale

Hi Dale,
My mom had only a small dose of Cytoxan 750mg to last a week and then, she had to wait another week to take the rituxan.
I would think it would only take a month or two on low dose oral cytoxan to get into remission.

[Pete]

I was on cytoxan (100-150 mg/day) for 16 months. I echo Dale's thoughts on hydration. Before I got sick, I had never had a UTI. Had an episode of visible hematuria. Bumped bactrim up to daily dose from 3x/week. Cystoscopy a few weeks later showed no anomalies, and the infection cleared ok. Changed from cytoxan to methotrexate a few months later. Been on mtx and bactrim 3x/week for 2.5 years with no major problems.

[mrtmeo]

I like the idea of lots of water starting in the AM until bedtime to flush the cytoxan out.
I will definitely use cranberry extract too to help the bladder, but I wouldn't want her on it more than 2-3 months max.

[Pete]

I like the idea of lots of water starting in the AM until bedtime to flush the cytoxan out.
I will definitely use cranberry extract too to help the bladder, but I wouldn't want her on it more than 2-3 months max.

I don't like just plain water, so I always put about an ounce of cranberry juice in my water. I buy a store brand (Giant Eagle) that has no added sugar. Been doing this since we moved to Columbus 4+ years ago...

[annekat]

I was on oral CTX, 100mg/day, longer than I should have been, I guess about a year. It helped me a lot, though, and I think I could have switched at around 6 months if not sooner. Only time would tell how your mom would respond to a steady dose of it over 2-3 months or more. I can understand why you want to try it, and wonder what your new rheumy would say about it. I remember her nephrologist thought her body was too fragile for it. But I wonder if all docs, including the rheumy, would agree with that.

[mrtmeo]

I was on oral CTX, 100mg/day, longer than I should have been, I guess about a year. It helped me a lot, though, and I think I could have switched at around 6 months if not sooner. Only time would tell how your mom would respond to a steady dose of it over 2-3 months or more. I can understand why you want to try it, and wonder what your new rheumy would say about it. I remember her nephrologist thought her body was too fragile for it. But I wonder if all docs, including the rheumy, would agree with that.

Hi Anne,
When I mentioned cytoxan to her rheumy, to my surprise he said it was too strong but when I asked about another round of rtx, he said sure.
When I asked her nephrologist this week about ctx, he said we could do it if things don't improve, but to save for when she really needs it.
I thought this thru very carefully and with the help of the wonderful, knowledgeable folks here, I think she needs to do the ctx.
If there wasn't this organ threatening issue, I could wait for the mofetil, but it has been 4 months on it with no remission.
Cytoxan works faster and that is why it is the first line drug used.
If her neph doesn't think she should use ctx, I will find someone else who will, if by the next blood work there is no improvement.

[annekat]

Your mom doesn't sound like a woman who would weigh very much, although I could be wrong.... so would need a lesser dose of CTX than some. However, it is all relative, as the dose is based on weight, so to her, it would be the same as a heavier person on a higher dose. In my case, I really should have been on 125mg according to the ratio I'd seen on the top WG sites. But the doc started me on 50mg for a week or more, I forget how long, along with pred, to get me acclimated to the drug. Then he wanted to go to 75mg. but I insisted on at least 100mg., having read the forum and done the research, and wanting to get on with it. I stayed on 100mg., except for a short spell on 125mg. when a weird symptom cropped up. Then back to 100mg, and I did well, though I wonder if it would have been faster at 125mg. Anyway, with your mom as sick as she is and no progress being made, I agree with you that it could be a chance worth taking. If her kidneys could improve by going this route, she would have a chance of a more normal life again, as would you. Otherwise, the way things are going, it does seem like there isn't a lot of hope. However, as many have said, RTX takes more than one round for some, so that could be the case here. Or, as we were conjecturing before, both CTX and RTX, not necessarily at the same time, since I'm not sure if that's done. I know that RTX and MTX are sometimes done concurrently, as testified to by some of our members.

[mrtmeo]

My mom usually weighs around 107 lbs, but she looks like she weighs 89 lbs.
I don't know why she weighs more than she looks.
Most of the stories I have heard of weg's folks not responding to the ctx, they switched to rtx after 3 months and had good improvements.
I heard that rtx is not used in Israel for MPA because it doesn't work for induction for MPA.
It probably works for those that are non responsive to ctx.
The best results of those with MPA that I have seen is ctx and then, imuran.

[annekat]

107 is not very heavy. I was around 145, I think, when my ideal dose of CTX would have been 125mg. Then I put on 20# of pred weight. Now, I've lost all that but struggle somewhat to stay below 140-145. I am only 5'1''.

[mrtmeo]

107 is not very heavy. I was around 145, I think, when my ideal dose of CTX would have been 125mg. Then I put on 20# of pred weight. Now, I've lost all that but struggle somewhat to stay below 140-145. I am only 5'1''.

My mom is 5 ft 1/2 inch, so you two are close in height. I'm not sure how much the dr would prescribe due to her kidney function and I don't know if he will do it. Just because she is 76 yrs old, has emphysema and going thru benzo withdrawal, they don't seem to care. Maybe if she was young they would have treated her appropriately.

[annekat]

My mom is 5 ft 1/2 inch, so you two are close in height. I'm not sure how much the dr would prescribe due to her kidney function and I don't know if he will do it. Just because she is 76 yrs old, has emphysema and going thru benzo withdrawal, they don't seem to care. Maybe if she was young they would have treated her appropriately. I don't remember what the ratio is of mg. per pounds or kilos of body weight for CTX and when I've tried to search it have gotten impatient. But I'm sure it is online somewhere. The fact that I got by on less than the suggested amount, and it knocked out my worst symptoms in a few months, might indicate that your mom could also use lower than the suggested dose for her weight. Who knows what the docs would think or do. I understand your frustration at having them choose not to be more proactive. There are risks with these meds for anyone. I understand she is very frail, but what is the alternative? If they will not prescribe CTX, I hope you will go for another round of RTX, if that is what they suggest.

[mrtmeo]

I don't remember what the ratio is of mg. per pounds or kilos of body weight for CTX and when I've tried to search it have gotten impatient. But I'm sure it is online somewhere. The fact that I got by on less than the suggested amount, and it knocked out my worst symptoms in a few months, might indicate that your mom could also use lower than the suggested dose for her weight. Who knows what the docs would think or do. I understand your frustration at having them choose not to be more proactive. There are risks with these meds for anyone. I understand she is very frail, but what is the alternative? If they will not prescribe CTX, I hope you will go for another round of RTX, if that is what they suggest.

Looks like the cyclophosphamide dosing is 2mg/kg, so 100mg would probably be prescribed for her.
Rtx seemed to work for the rheumatoid factor problems, but not well for the kidneys.
I don't know if it had any effect on her lung nodules because she hasn't had a hrct yet.

oops, forgot the link
http://www.ncbi.nlm.nih.gov/pubmed/19451574

[annekat]

Looks like the cyclophosphamide dosing is 2mg/kg, so 100mg would probably be prescribed for her.
Rtx seemed to work for the rheumatoid factor problems, but not well for the kidneys.
I don't know if it had any effect on her lung nodules because she hasn't had a hrct yet. If I remember right, Cindy with MPA, in the video you posted, used oral CTX, 150mg/day as per her body weight, along with prednisone, and recovered nicely. And I think she had kidney involvement, did she not? I know you have your reasons for not wanting her to take pred, and wonder what the docs say about that. I don't remember the specifics.

[mrtmeo]

If I remember right, Cindy with MPA, in the video you posted, used oral CTX, 150mg/day as per her body weight, along with prednisone, and recovered nicely. And I think she had kidney involvement, did she not? I know you have your reasons for not wanting her to take pred, and wonder what the docs say about that. I don't remember the specifics.

I have corresponded with Cindy and she said she started on 125mg for a time and reduced to 100mg. She was on it for 6 months and imuran for a year, but went into remission around 3 months. She had kidney involvement, but it didn't go to kidney failure and hers is normal now. She has not had any flares since. I think she has been vasculitis free since 2006.

[JeanMarie]

I don't know much about MPA so take this with a grain of salt--How does your Mom feel? At least with wegs, the docs seem more concerned with how you feel than the numbers. I finished RTX the beginning of July. This month my ESR was 33, Creatinine 1.61, PR3 10 (should be less than 4) I've no symptoms that indicate a flare so the docs aren't considering treatment. The Rheumy cut my pred to 5mg. this month from 7.5. The kidney doc thinks the damage is permanent but thinks 1.61 is tolerable. Of course the only way to be sure would be to do another biopsy-and nobody wants to keep doing that every couple of years. Right now the docs are more concerned about infections - I've had 2 in the last 6 mo. Also I've got a lymphoma that I've never been treated for & the docs consider that the sleeping giant in the room so any other medical conditions we've got are also a consideration.

So what I'm trying to say is (for me anyway) this is as good as it gets. But like I said, I don't know anything about MPA & we are all different anyway. You've been trying so hard to help your Mom--I hope she feels better soon.

[mrtmeo]

I don't know much about MPA so take this with a grain of salt--How does your Mom feel? At least with wegs, the docs seem more concerned with how you feel than the numbers. I finished RTX the beginning of July. This month my ESR was 33, Creatinine 1.61, PR3 10 (should be less than 4) I've no symptoms that indicate a flare so the docs aren't considering treatment. The Rheumy cut my pred to 5mg. this month from 7.5. The kidney doc thinks the damage is permanent but thinks 1.61 is tolerable. Of course the only way to be sure would be to do another biopsy-and nobody wants to keep doing that every couple of years. Right now the docs are more concerned about infections - I've had 2 in the last 6 mo. Also I've got a lymphoma that I've never been treated for & the docs consider that the sleeping giant in the room so any other medical conditions we've got are also a consideration.

So what I'm trying to say is (for me anyway) this is as good as it gets. But like I said, I don't know anything about MPA & we are all different anyway. You've been trying so hard to help your Mom--I hope she feels better soon.

Hi JM,
Your kidney function could still improve.
My mom has severe anemia which her neph claims it is from the kidneys.
However, her anemia stopped for a couple weeks when she was on the recommended dose of mofetil.
I know my mom has some internal bleed, maybe the lungs which is from the active vasculitis and this needs to be controlled before there can be any improvement in kidney function.
She is not able to tolerate the mofetil dose that was working, so I want her to try the cytoxan which gave her the best improvement in kidney function.

[Wegetarian]

Is CTX used in pill form over there? Here in Finland I don't think they prescribe it anymore. A rheumy I talked too thought the IV form was much better. Had 7 infusions of CTX this fall, about 3 weeks a part (the first few doses were 2 weeks between, I think, and due to the flu I had to push the later doses a few times for a week or two).

Are you sure RTX doesn't work for MPA? I think I remember reading some trials about RTX where they took GPA and MPA patients.

[annekat]

I and I think a lot of us have taken CTX in pill form. It worked fine for me. I imagine the accumulation factor in the bladder could be worse than with the infusion form, although 7 infusions three weeks apart sounds like a lot, too. I don't know what dosage you get per infusion. It sounds like it would be effective, all right.

[Wegetarian]

I don't remember exactly how much it was, might have been 1500mg per infusion. Does that sound right?

On the first time they put 2 litres of saline solution + .5l of something for nausea + .5l of CYC and after that an another 2l of saline solution. I think they started at 11am and I was finished around 8pm and felt like a balloon. Was so bloated the next day... On the following IV's they just put half the amount of saline solution. I also got something similar to that urometasomething which help to prevent bladder stuff.

[mrtmeo]

I don't remember exactly how much it was, might have been 1500mg per infusion. Does that sound right?

On the first time they put 2 litres of saline solution + .5l of something for nausea + .5l of CYC and after that an another 2l of saline solution. I think they started at 11am and I was finished around 8pm and felt like a balloon. Was so bloated the next day... On the following IV's they just put half the amount of saline solution. I also got something similar to that urometasomething which help to prevent bladder stuff.

I believe the bladder drug is called Mesna?

[Wegetarian]

The one they gave me had a much more complicated name, but its supposed to do the same thing :)

[mrtmeo]

The one they gave me had a much more complicated name, but its supposed to do the same thing :)

It is marketed by Baxter as Uromitexan and Mesnex?

[drz]

I was told the pill form of CTX is generally regarded as more effective and safer to use since they can easily adjust the dosage up or down each day according to your lab work and there is less chance of a severe reaction to it given the lower dosage since it is taken daily.

[Marty B]

My nephrologist did plasmapheresis first with Cytoxan pill form, for my Kidney's for a month the Cytoxan a couple months.. I kept getting sick And my white blood count went to 0 so they had to take me off of it give me shots to build me back up..and my red blood too..then my Rheumy stepped in got me Retuxan and I was in remission for 4 years.. My kidney's are still fine. It hit my lungs this time! I kept getting breathing attacks thinking I had a heart attack or pleurisy I had water around my heart and nodules in my lungs.. One CT in July showed some, then another in November showed tons more.. By December I thought I was dying, and my Pulmonary doctor was old, so they sent me to a new one which to one look at my CT's and said, it was a Flare.. But all my numbers came back off the chart too..
My kidney's will never be better than 30% because I almost lost both..they were at 9% when we caught it.. My creatin will never get any better than 1.6 and I am happy with that!! I will start to worry when I see 2.00 then I know it's attacking my kidney's again..

[mrtmeo]

My nephrologist did plasmapheresis first with Cytoxan pill form, for my Kidney's for a month the Cytoxan a couple months.. I kept getting sick And my white blood count went to 0 so they had to take me off of it give me shots to build me back up..and my red blood too..then my Rheumy stepped in got me Retuxan and I was in remission for 4 years.. My kidney's are still fine. It hit my lungs this time! I kept getting breathing attacks thinking I had a heart attack or pleurisy I had water around my heart and nodules in my lungs.. One CT in July showed some, then another in November showed tons more.. By December I thought I was dying, and my Pulmonary doctor was old, so they sent me to a new one which to one look at my CT's and said, it was a Flare.. But all my numbers came back off the chart too..
My kidney's will never be better than 30% because I almost lost both..they were at 9% when we caught it.. My creatin will never get any better than 1.6 and I am happy with that!! I will start to worry when I see 2.00 then I know it's attacking my kidney's again..

Hi Marty,
I firmly believe that rituxan works great for most weg's folks, especially, those who are non responsive to ctx.
However, I don't believe rtx should be used for MPA.
Israel doesn't use rtx for MPA because it doesn't work for MPA.
I wish I would have known this in the beginning.
My mom had almost zero improvement of her kidney function on the rtx.

[Velma]

Most of us have started out on Cytoxan it seems.. as did I as well. I was switched to Methotrexate and have done wonderful for the past 18 of 20 years on it--at different levels of course. Please check on the possibilities of this because it seems she is flaring and it has a pretty fast effect on the disease with little side effects and complications. Good luck!

[mrtmeo]

Most of us have started out on Cytoxan it seems.. as did I as well. I was switched to Methotrexate and have done wonderful for the past 18 of 20 years on it--at different levels of course. Please check on the possibilities of this because it seems she is flaring and it has a pretty fast effect on the disease with little side effects and complications. Good luck!

Hi Velma,
She cannot take mtx due to her kidney failure and she has MPA.

[annekat]

It is marketed by Baxter as Uromitexan and Mesnex? If there is something to help protect the bladder during CTX use, I wonder why it was not made available to those of us taking oral CTX? I haven't heard it mentioned on here before. Is there a reason, such as delivery method or other, that it would only be useful for those getting infusions of CTX?

[mrtmeo]

If there is something to help protect the bladder during CTX use, I wonder why it was not made available to those of us taking oral CTX? I haven't heard it mentioned on here before. Is there a reason, such as delivery method or other, that it would only be useful for those getting infusions of CTX?

I have only seen it used once someone gets cystitis, but haven't seen it as a prophylaxis.

[Thinker]

My doctor did prescribe Mesna to protect my bladder while I was taking oral Cytoxan, the copay was $5,000, no joke! Needless to say, I drank alot of water instead.

[mrtmeo]

My doctor did prescribe Mesna to protect my bladder while I was taking oral Cytoxan, the copay was $5,000, no joke! Needless to say, I drank alot of water instead.

Ouch!
Do u live in the USA?

[annekat]

My doctor did prescribe Mesna to protect my bladder while I was taking oral Cytoxan, the copay was $5,000, no joke! Needless to say, I drank alot of water instead. Sheesh! No wonder I wasn't prescribed it. I drank lots of water!

[Wegetarian]

It is marketed by Baxter as Uromitexan and Mesnex?
Ok, I think it was Uromitexan.


My doctor did prescribe Mesna to protect my bladder while I was taking oral Cytoxan, the copay was $5,000, no joke! Needless to say, I drank alot of water instead.

Holy moly! I'll never understand the weirdness of the US health care pricing... Looking at the price list it seems to cost 15-25 euros / tablet but I suppose the hospitals get them cheaper as they wouldnt buy just 20 tablets... Not that I'll ever know since the hospital day + ctx IV + mesna cost around 30 euros per time.

I took 1/2 tablet around the time of the IV, 1/2 tablet was it 2 hours after the IV and then 1/2 tablet later at home. They had exact times when I needed to take them, but don't really remmeber anymore.

[Thinker]

Yes, I do live in the U.S. We have an HMO for health insurance, overall it's been good insurance. I did get Mesna in the hospital when I first started the oral Cytoxan. I guess it was covered as an inpatient as I only had one set copay for the whole hospital admission. It was a very bad tasting liquid that came in a little vial. I'm not sure why the copay was so huge. It must be an expensive drug. I didn't try fight it as I felt so sick at the time and from what I researched on here most people did not mention taking it, just that they drank lots of water. It would be interesting to hear if anyone else in the U.S. got an outpatient prescription for it and what their copay was.