Lost all patience

[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.