Mofetil - no more choices?

[vdub]

Wegs is serious and can be life threatening, but you are over-engineering her treatment. Let the doc prescribe, keep it steady, and see what changes in a month or so. And, if on multiple meds, make the changes slowly and only one at a time, so you can see what works and what doesn't.

Don't over-obsess with the disease or the treatment. It won't do you any good and it won't do your mom any good. Settle down, find a 2nd hobby to keep your mind off things, and approach the disease (and life) with a slower pace. If you can't walk away from the forum and the internet for a week and not think about the disease for a week, then I think you might have a more serious problem than her. Walk away, settle down, give your mind a rest. You need to reboot and reset yourself.

[annekat]

Blake, I want to assure you that when I "like" a post directed at you, it means that I agree with most of it and feel that it was made in your best interest, even though you might react negatively to it. It may be that I would have worded some of it differently or left some parts out. We each express ourselves differently. And to everyone, not "liking" a post doesn't mean I dislike it. There is no dislike button on here and if we really dislike something, we usually just say so in a response, or in a PM. We can't "like" every post, because then it would become meaningless. So I "like" selected ones and am a more active "liker" some days than others. It's pretty rare that I actually dislike a post on here.

[LisaMac]

I've discovered that Wegener's is a bit of a tightrope walk. Changes in meds, diet, exercise, and lifestyle need to be made slowly, one small step at a time. Yes, focus more on high fiber veggies, in their natural state, and lots of water rather than obsess about meds. Try to get her body moving, even if she's just in a chair moving her arms above her head and kicking her feet.

[mrtmeo]

Let me restate as clearly as I can to assure everyone questioning my mom's care.
My mom's nephrologist is monitoring ALL of her medications.
I communicate all her heath issues and he with me on her health and medication issues via mychart.
I am assuming people are questioning my care of my mom because she is not on this forum posting.
She has never posted to a forum and has no desire.

Her nephrologist gave up on her when the rituxan didn't work after 2 months.
I asked him what he thought would happen to her and he said she would waste away from kidney failure.
The hospital dr tried to convince her to go into a rehab, go on psych meds (which she has an allergy to) and to not consider a feeding tube.

I discussed this with my mom and told her I would NOT give up on her and told her how we can get thru this.
She agreed and is doing far better than back then.
Her nephrologist, since has seen her improvements and is amazed at her improvement.

Anyone still confused, My mom's nephrologist prescribed her 750mg-1gm Mofetil daily and tapering prednisone at a rate she is comfortable with. Her Rheumatologist said she should really be on 1gm daily to be more effective, but she gets severe diarrhea (8 times in one day leaking out her diaper, sorry for the yuk) and her nephrologist said to lower the dose to what she can tolerate.

She has not gone above this amount of mofetil and only goes below this amount when she has severe diarrhea and vomiting.
Her nephrologist is aware of her GI intolerance and the changing of dosings based her toleration according to him.

I hope this clears up any confusion.

[mrtmeo]

As far as the ctx, her nephrologist doesn't want to use it unless she gets worse.
I told him that I can try dosing 1gm Mofetil every other day or 4th day to see what she can tolerate and if she doesn't get better, she said she wants to do the ctx. He agreed.

I think this alternating dosing is working because her urine is no longer strong smelling and the urine dip stick shows less protein and no blood.

[LisaMac]

Hmmm, hopefully this will ease your mind. When I was diagnosedmy creatine was 11.4. They immediately started dialysis, Prednisone, and monthly Cytoxin infusions . Within about 4 months I was taken off dialysis completely and completed 6 months of Cytoxin treatments. My creatine has been below 1.4 since then. I just say this because the Ctx 'fixed' my symptoms.

I think you're very brave and a great advocate for your mom. This can all be so confusing.

[mrtmeo]

Hmmm, hopefully this will ease your mind. When I was diagnosedmy creatine was 11.4. They immediately started dialysis, Prednisone, and monthly Cytoxin infusions . Within about 4 months I was taken off dialysis completely and completed 6 months of Cytoxin treatments. My creatine has been below 1.4 since then. I just say this because the Ctx 'fixed' my symptoms.

I think you're very brave and a great advocate for your mom. This can all be so confusing.

Hi Lisa,
That is outstanding improvement with your kidney function!
I wish I would have known back then, what I know now because I would have stuck with the ctx because it was working.
Her nephrologist didn't want to use the ctx if we didn't need it because he felt it was too toxic for my mom.
She a large iv dose of ctx and seemed to do well on it, so not sure what he really meant by that.
I found out now, that rtx doesn't work well for mpa but works well for many with weg's.

[LisaMac]

Ima lookin' for a 'like' button.

[mrtmeo]

Ima lookin' for a 'like' button.

It's not really a button but in the lower right hand corner of someone's post, above the "Reply With Quote" is the words "Like" and "Share"
Click on the like and it will show you like this post.

[mrtmeo]

Wegs is serious and can be life threatening, but you are over-engineering her treatment. Let the doc prescribe, keep it steady, and see what changes in a month or so. And, if on multiple meds, make the changes slowly and only one at a time, so you can see what works and what doesn't.

Don't over-obsess with the disease or the treatment. It won't do you any good and it won't do your mom any good. Settle down, find a 2nd hobby to keep your mind off things, and approach the disease (and life) with a slower pace. If you can't walk away from the forum and the internet for a week and not think about the disease for a week, then I think you might have a more serious problem than her. Walk away, settle down, give your mind a rest. You need to reboot and reset yourself.

Hi vdub,
My mom has MPA and not Weg's, but she is taking her meds as directed by her nephrologist due to her GI intolerance.
The only other thing she can do if this doesn't work is ctx.
I wish I could just walk away, take a rest and do something else, but there is no one else to take over.
I keep looking for that improvement that others get, hoping to get some relief, but hasn't happened, yet.
Hopefully, this dosing will stop the disease.