Mofetil - no more choices?

[Jaha]

There was someone else on this forum that had a lot of problems with diarrhea on cellcept. I haven't had that problem with it I just feel like I'm getting poisoned from it. I asked if I might go back to mtx and she said that I was allergic to it, I don't remember that. I took the shots and the side effects were just leg pain for a couple days. I now have read that it isn't good for people whom had lung involvement. I'm like you I wish I knew a lot more earlier I would have insisted that my induction start with ctx and preds and maybe I would have avoided taking all the preds over the years and matbe been in remission. Thanks again for all the sharing.

[mrtmeo]

There was someone else on this forum that had a lot of problems with diarrhea on cellcept. I haven't had that problem with it I just feel like I'm getting poisoned from it. I asked if I might go back to mtx and she said that I was allergic to it, I don't remember that. I took the shots and the side effects were just leg pain for a couple days. I now have read that it isn't good for people whom had lung involvement. I'm like you I wish I knew a lot more earlier I would have insisted that my induction start with ctx and preds and maybe I would have avoided taking all the preds over the years and matbe been in remission. Thanks again for all the sharing.

Maybe you got a rash when on mtx?
Mtx is not used if you have kidney involvement.
I have read that mtx can cause problems with the lungs.
Have you tried Imuran?

[Jaha]

I did Imuran after Mtx and she says I was allergic to that, I think that at that time I remember flaring badly on it. I was then moved to oral Ctx, she ordered the wrong dose, lower than it should have been for my then weight. We discovered that after taking it for almost 4mos., so for two months I got the proper dosage. I then got put on Cellcept and started the Rtx infusions one year later. So now it is 2000mg per day of cellcept and rtx every 6 mos along with the preds and bacterium mwf.

[mrtmeo]

update:
I started giving my mom 1gm cellcept every 4th day and 750mg on the other days.
So far, it has been over 2 weeks without any vomiting or severe diarrhea, so this might work.
Her urine doesn't smell as strong anymore.
Also, she is at 3.5mg pred and getting electro acupuncture for the kidneys.

[Debbie C]

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.

[vdub]

I may be totally off beam here. I guess the number of likes (or dislikes) I get will either validate or villianize my comment.


When I first start reading your posts (I try to read or at least skim all posts), my reaction to them ranged from comical, to entertaining, to shock, to irritation and anger, to a liability concern for the forum. After going through all these emotions for months, I am no longer angry, but genuinely concerned about your mental health and the care you are giving to your mom.


I think you need to at least talk to a mental health professional. There are many in your area that might be able to help you. If you want help in selecting one, I'm sure we have readers in your area that could assist you.

[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 can assure you this not something that I dictate.
I am not a dr nor a prescriber, so I wouldn't be able to change her doses on my own.
I am doing what the dr agrees to do in order to get her disease under control and stop the kidney loss.
These updates are for those who are in a similar situation and I hope it helps them.

Why are you questioning my mom's dosing when people discuss their dosing all the time on this forum without stating that it is monitored by a physician. I didn't know that I needed to note that her dr is prescribing her dosings.

[Debbie C]

Update:
My mom got bad nausea, vomiting and diarrhea from 1,000mg Mofetil, so I stopped it for a couple weeks.
I restarted her on 250mg per day and no nausea or diarrhea or constipation.
It seems to be working because she is getting her appetite back and her urine is lighter.
I will try to get her up to 500mg per day and see how that goes.

This sounds to me that you are taking matters in your own hands. I don't see anywhere, where you say a dr. has told you to do this ,it says " I ".
As long as the dr knows you are doing this and it is working ....great. It just doesn't sound that way.

And on the another thread you mention using iodine in your nose.OMG.... I hope no one does that without first consulting their dr or ent. You have to remember ,everyone is different and reacts differently to things. Does your moms dr know about this because it sounds like something you read and just made up your own measurement concoction.
I know you try hard to investigate things to help your mom and I am glad tthat she is improving. I was just stating that 1 week its this and another that oh and then " I " tried this.
I sincerely hope what ever it takes she improves,I just hoping you are not doing the way you think should be done

[annekat]

Hi Debra,
I can assure you this not something that I dictate.
I am not a dr nor a prescriber, so I wouldn't be able to change her doses on my own.
I am doing what the dr agrees to do in order to get her disease under control and stop the kidney loss.
These updates are for those who are in a similar situation and I hope it helps them.

Why are you questioning my mom's dosing when people discuss their dosing all the time on this forum without stating that it is monitored by a physician. I didn't know that I needed to note that her dr is prescribing her dosings.

Blake, I agree with Debra that it sounds like you are making decisions without a doc about your mom's dosing, in the way that you state it. I didn't get the feeling that you talk to doctors all that often, or take her to see them often.... not a criticism, just an impression which may be wrong. If her docs are working with you on these adjustments, that implies that they think highly of your ability to help make these decisions, based on all the research you do, which is probably more than they do, and that is in your favor. We on here do worry about your mom because we feel she could benefit from consulting with a true vasculitis specialist, or more than one, maybe even a whole team who would work together and would include a rheumy and a nephrologist. I do understand the difficulties of arranging all that and getting her there, and that you feel that with a doctor's help, your constant research, and all that you know about what does and doesn't help her, you are capable of making some good decisions about her care. I know your mother is probably the most important person on earth to you and you care for her deeply, and that is of course why you do it. But I worry that you are isolated and your life is taken over by this, and it could take a toll on your mental health, as vdub has suggested. As for your mom, I haven't heard anything lately about any aggressive treatment plan such as CTX or trying more RTX, and am wondering if you need a doc who is more open to talking about these things than her current nephrologist. Believe me, I'm only sharing these concerns because I care about you and your mom and wish some better progress could be made. Best wishes to you both.

[annekat]

Why are you questioning my mom's dosing when people discuss their dosing all the time on this forum without stating that it is monitored by a physician. I didn't know that I needed to note that her dr is prescribing her dosings.

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.