Mofetil - no more choices?

[mrtmeo]

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.

Hi Anne,
I am not sure what you trying to relay, but if it has to do with how I write and explain things, I understand that I may not be very clear.
It is really difficult to portray things in writing without seeing the person and hearing them speak.
This is why I usually try to write as little as possible to relay my point, so that it doesn't bring too many thoughts into what I am trying to say.
Also, too much text becomes cumbersome to read and some people just want to find an answer without digging.
I hope this is following what you are saying and if not, please let me know.

[mrtmeo]

You are right, Blake, that a lot of us talk about making adjustments in our prednisone without asking our docs first. Tapering pred, or using a little extra now and then, seems to be acceptable by many of our docs to be done at our own discretion. I think my doc is getting tired of my dragging my feet on the tapering and I noticed my latest renewed refills are for only one refill and will need another authorization next time. So he is sending me a message, I need to get off the pred faster. So far it is working, I've dropped from 13mg to 12mg this week and have no ill effects or the usual red spots on my arms. Maybe just a little extra fatigue the next day. I know your mom is on a lot less pred than I am and it isn't an issue, which is good. I remember that she could not tolerate higher doses.

However, pred is the only med which we ever seem to be allowed to regulate ourselves. It seems to me that most people will mention having seen a doc before, say, dropping the amount of MTX taken each day, and don't just say that they've put themselves on a lower amount or tried a bigger amount or whatever. So that is why people have gotten this impression about you, because you do use those kinds of statements. If you talk to your doc more than we thought you did, then that is good. We would feel even better about it if your doc was someone who seemed more to us like a vasculitis specialist. I'm talking about the nephrologist but also wonder about the new rheumy and to what extent he or she is a actively involved in your mom's dosages and such. We just want you and your mom to be in the best hands and ones you can trust.

Hi Anne,
I believe I have answered your other questions with my other posts, but if not, please let me know.
Do u use the red spots showing up as an indicator of a flare?
I am just curious what others use as a guage of when they sense a flare coming on.

[mrtmeo]

mrtmeo,I have been reading your posts and I don't mean to be rude because I realize you do ALOT of research on different matters but it sounds like you are taking your mothers treatment in your own hands by trying this and stopping that and raising and lowering things. Her body may need time to get use to the different meds and adjustments that you are giving her. I understand your concern and frustration since I am I caretaker of my mother with other problems and nothing helps her and she is in constant pain and sick from all her meds but there is nothing we can do. Do you not have a dr that you are comfortable with the treatment they suggest if not maybe you need to pursue a different one. I think you are taking too much on.

Hi Debra,
I believe I have answered your concerns with my prior posts and if not, please let me know.
Sorry for the late answers.
Alot of posts to respond to.

[kaysee]

Blake,
I think you are a saint for all that you do to care for your mother and for the research that you do. You have stated before that your mother does not understand her disease. She is very lucky to have you as an advocate for her well being. I wish that my own sons would take more of an interest and educate themselves in this dumb disease for I know that some day I will not be as able as I am now. Being the only care giver for someone can be very stressful. Take care of yourself as well, for you are a blessing to your mom.

[mrtmeo]

Blake,
I think you are a saint for all that you do to care for your mother and for the research that you do. You have stated before that your mother does not understand her disease. She is very lucky to have you as an advocate for her well being. I wish that my own sons would take more of an interest and educate themselves in this dumb disease for I know that some day I will not be as able as I am now. Being the only care giver for someone can be very stressful. Take care of yourself as well, for you are a blessing to your mom.

Thanks Karen and yes, most people do not show an interest in this disease for some reason and I don't truly understand that.
If there could be as much awareness of this disease as there is for Cancer, then people might show more interest.
Vasculitis might be considered rare, but new people are joining here everyday, so it can't be that rare.
I pray that u stay in remission and won't ever need assistance and thank you for your kind words.

[Debbie C]

My mom's nephrologist is monitoring ALL of her medications.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.

First let me start by saying I am not questioning her care because she doesn't post herself...its the things you SOMETIMES post that I question.
Ans second and MOST important, if one of my mothers dr. ever said they were going to "give up on her " because the rtx didn't work fast enough, you can bet your A## I would be finding another dr. He or she? doesn't seem to know what to do in the first place and it sounds that you are making the suggestions.And again if it is working GREAT but if the ctx worked why not give it a try again. And find a dr. that knows what they are doing.
You do Alot of research on this and I give you credit for it but you shouldn't be the one doing it. Find her a good dr. that knows how to treat her and maybe you can give yourself a break.

[mrtmeo]

First let me start by saying I am not questioning her care because she doesn't post herself...its the things you SOMETIMES post that I question.
Ans second and MOST important, if one of my mothers dr. ever said they were going to "give up on her " because the rtx didn't work fast enough, you can bet your A## I would be finding another dr. He or she? doesn't seem to know what to do in the first place and it sounds that you are making the suggestions.And again if it is working GREAT but if the ctx worked why not give it a try again. And find a dr. that knows what they are doing.
You do Alot of research on this and I give you credit for it but you shouldn't be the one doing it. Find her a good dr. that knows how to treat her and maybe you can give yourself a break.

Hi Debra,
Yes, I went to another nephrologist and was far worse.
Her nephrologist is a he.
I also, connected with a recommended rheumy, but I think his knowledge is mostly for weg's.
My mom and I would rather try the ctx too, but both the neph and rheumy thought it was too toxic for her right now.
Since her kidney function has not gotten any worse, he doesn't want her on the ctx and to continue on mofetil.
I sure wish I would have realized the improvement she had with the ctx vs rtx and switched over to the ctx 4 months ago, but I didn't.

I was told that rtx worked well for both weg's and mpa by someone from the vasculitis foundation, but they didn't have anyone I could talk with that used rtx.
Also, it wasn't until Dec last year when I talked with the Rheumy who says he communicates with Carol Langord, that he was suprised that my mom didn't respond well to the rtx and that Dr Langford always uses rtx for induction of remission for both mpa and weg's.

I had read an article by dr langford that she was still using ctx as the first line treatment, but he said that was an old article and she uses rtx now.

I would rather try the ctx and use the mofetil for maintenance, but not sure how I could convince her drs to that.

One more thing, my mom has emphysema, is 77 years old today, and is on oxygen due to benzodiazepine taper, so her drs don't seem to concerned with getting her into remission. I don't care how old or what conditions a person has because everyone deserves fair and proper treatment.

[Debbie C]

mrtmeo...Tell your mom HAPPY BIRTHDAY from us . I see Dr. Langford now at the Cleveland Clinic and since it is not an issue for me at this time,I don't know where she stands on the subject.But I know she had me get a bladder scope done after being on ctx for 6 months...which I did 2 weeks ago and everything turned out good .
I don't know where you live but I get a monthly newsletter from VF assc. and they are having a patient and family 1/2day conference on April 22 and there is a $20.00 fee..if anyone else is interested in going I give you more specifics. I am debating about going to the one in Fl. I wouldn't mine going but the rooms are $135.00 + tax a night which is pretty steep.
I just also wanted to say that if you are still unhappy with her drs. and her care... or lack of that she is receiving than keep looking.There are good,caring ones out there.
I also just read in this newletter that there is now a vasculitis app on itunes that can be downloaded to an iphone or ipad and will be availible for androids later this year.That was made for drs. to get quick info on it !!!!!! Good luck Blake

[mrtmeo]

mrtmeo...Tell your mom HAPPY BIRTHDAY from us . I see Dr. Langford now at the Cleveland Clinic and since it is not an issue for me at this time,I don't know where she stands on the subject.But I know she had me get a bladder scope done after being on ctx for 6 months...which I did 2 weeks ago and everything turned out good .
I don't know where you live but I get a monthly newsletter from VF assc. and they are having a patient and family 1/2day conference on April 22 and there is a $20.00 fee..if anyone else is interested in going I give you more specifics. I am debating about going to the one in Fl. I wouldn't mine going but the rooms are $135.00 + tax a night which is pretty steep.
I just also wanted to say that if you are still unhappy with her drs. and her care... or lack of that she is receiving than keep looking.There are good,caring ones out there.
I also just read in this newletter that there is now a vasculitis app on itunes that can be downloaded to an iphone or ipad and will be availible for androids later this year.That was made for drs. to get quick info on it !!!!!! Good luck Blake

Hi Debra,
My mom says thank you!
I do get the VF newsletter, but don't have an iphone or android.
I wonder if it can be downloaded to a pc?
It is very difficult to go to other drs in search of a good one because of my mom's diarrhea and oxygen.
We are in Wisconsin and if she was in better shape, I would take her to Mayo.

The other problem right now is when I had the hospital transfer her records thru the mail to another hospital, they claimed they didn't get it.
Also, since she has a GI issue with mofetil and imuran, I am not sure she wouldn't have a GI issue with ctx, but if she went on ctx for a couple months and then, mofetil after that, she might go into remission faster.

I don't really know for sure, but I would need a stronger reason to get her dr to put her on ctx right now.
Her crp is normal, but her sed rate and rf are elevated, plus she is still p-anca pos with high mpo.
I wish their anca tests would provide actual numbers, so we could know if anything was working, but I guess medicare doesn't want to cover it.
When she was on the 1mg mofetil for a week, her anemia was going away, but the lower dose caused it to come back.


I would love to go to VF seminar sometime.

[annekat]

Hi Anne,
I am not sure what you trying to relay, but if it has to do with how I write and explain things, I understand that I may not be very clear.
It is really difficult to portray things in writing without seeing the person and hearing them speak.
This is why I usually try to write as little as possible to relay my point, so that it doesn't bring too many thoughts into what I am trying to say.
Also, too much text becomes cumbersome to read and some people just want to find an answer without digging.
I hope this is following what you are saying and if not, please let me know.

The whole discussion of the "like" button was because I didn't want to offend you by "liking" something someone else wrote that was in any way critical of you. But I did end up liking some of those posts, or parts of them, and the fact that the poster was very concerned about you. I think I was also trying to say that maybe some of us (and I don't mean you) attach too much importance to the use or non-use of the like button as a statement of whether we approved of the post. I think some of us never use the like button even if we like the post, while others, possibly even me, may use it so much that it becomes less meaningful than if we only use it occasionally for posts that really stand out to us. I think it was me who was unclear in what I was trying to say, and I didn't mean that about you. I think you are generally quite clear in what you say and don't usually use too many words to say it. I agree with that point, that too many words will become cumbersome and harder to get something out of, and that is something I'd like to try to do better on.