Mofetil - no more choices?

[mrtmeo]

My mom has been on mofetil for 18 days, but she has been constipated for 4 days.
I have tried stool softeners with laxitives and probiotics.
This all happened after she had vomiting and diarrhea one day.
I have read that Mofetil has caused acute colonic pseudo obstruction, so am stopping it for a few days to see if she goes back to her daily regularity.

The mofetil was working, too.
Her nephrologist said she wouldn't be able to handle cytoxan.
The rtx hasn't seemed to work well.

However, she can't tolerate the imuran and can't take mtx due to her kidneys and if this is from the mofetil, what other choices are there since she is not in remission, yet?

I don't know what to do anymore.

[drz]

There are some other lesser known and lesser used anti-rejection drugs that get tried in cases like yours when AZA, MTX and cellcept don't work or can't be used. They are less proven and generally less effective and it will take some research to find out if they are safe enough for her situation. Some times a drug that didn't work can be tried again at much lower dosages and built up slowly to to therapeutic level. So that might be worth another trial. Best wishes for better health.

[mrtmeo]

There are some other lesser known and lesser used anti-rejection drugs that get tried in cases like yours when AZA, MTX and cellcept don't work or can't be used. They are less proven and generally less effective and it will take some research to find out if they are safe enough for her situation. Some times a drug that didn't work can be tried again at much lower dosages and built up slowly to to therapeutic level. So that might be worth another trial. Best wishes for better health.

Hi Drz,
I was looking up immunosuppressants and couldn't find any others.
Do u know of any that you have seen?


I did try lower dose, but it wasn't doing anything, but not sure how long you have to wait.
btw, my mom actually went this morning and hoping she still goes more today and I have kept her on the Mofetil praying the constipation is going away.
So far, the mofetil looks like the one that can really help her, so I need this to work.

[drz]

Hi Drz,
I was looking up immunosuppressants and couldn't find any others.
Do u know of any that you have seen?


I did try lower dose, but it wasn't doing anything, but not sure how long you have to wait.
btw, my mom actually went this morning and hoping she still goes more today and I have kept her on the Mofetil praying the constipation is going away.
So far, the mofetil looks like the one that can really help her, so I need this to work.

I have seen them (other drugs) mentioned here at times but off hand don't recall the specific names.

[mrtmeo]

I have seen them (other drugs) mentioned here at times but off hand don't recall the specific names.

The only ones I had read about are cyclosporine and tracolimus, but have not seen much as far as efficacy.

[vdub]

What about Enbrel? Or is that just a fancy name for something you've already tried? I see it advertised on TV and assume its an immunosupressant, but not positive of that.

I've been on large doses of the hard narcotics for about 5 years now and constipation is a continuing problem. No fun at all. Fortunately, nothing bad enough yet where I've had to go to [the] hospital. ("the" in the previous sentence is optional for those of you in the commonwealth :-)

[mrtmeo]

What about Enbrel? Or is that just a fancy name for something you've already tried? I see it advertised on TV and assume its an immunosupressant, but not positive of that.

I've been on large doses of the hard narcotics for about 5 years now and constipation is a continuing problem. No fun at all. Fortunately, nothing bad enough yet where I've had to go to [the] hospital. ("the" in the previous sentence is optional for those of you in the commonwealth :-)

Enbrel is a genetically engineered biologic like rtx and is used for TNFa inhibitor, so not sure it would work.

My mom's biggest problems are her kidneys and lungs, so it would have to be something that works for those 2 organs.

[vdub]

I think Enbrel must be mostly for joints as the advertising targets psoriatic arthritis. I have PA, but it seems to be held in check with pred and mtx, so I've never considered Enbrel.

[annekat]

Early in my WG career, a relative asked one of his doctors about my illness, helping me look for a doc, and the subject of treatments came up. The doc was not any sort of WG doc or rheumy, that I know of, but knew what WG was, and mentioned Enbrel as a possible med. I looked it up on the web and found it had been tried for WG but hadn't been found to be very useful. I do see ads for it on TV lately, I think for arthritis treatment.

[Wegetarian]

I was looking up immunosuppressants and couldn't find any others.
Do u know of any that you have seen?

I have a recently published book on autoimmunity disorders which lists a ton of drugs, its in Finnish though - but I could look up the different drugs if you want. There were a bunch that I've never heard of before, and I guess they only have limited usage or perhaps are only being tried out. Like one pill was mentioned that it cost 100 euro per pill..

[mrtmeo]

I have a recently published book on autoimmunity disorders which lists a ton of drugs, its in Finnish though - but I could look up the different drugs if you want. There were a bunch that I've never heard of before, and I guess they only have limited usage or perhaps are only being tried out. Like one pill was mentioned that it cost 100 euro per pill..

Hi weg,
My mom's constipation has gone away after 5 days, so it looks like she can keep up with the Mofetil, thank God!
However, your list of alternatives may help others that come to this site if you don't mind posting them.
Also, have u converted your book to English?

[mrtmeo]

Update:
My mom's 5 day long constipation is gone!
She can continue the mofetil which appears to be working.
Thank you everyone for your info.

[annekat]

Update:
My mom's 5 day long constipation is gone!
She can continue the mofetil which appears to be working.
Thank you everyone for your info.
That's great to hear, mrtmeo! I know you've been waiting for a long time to see some progress, and this may not be all that you had hoped for, but it is something! Good to know you can stick with the med you feel is the best option at this point.

[mrtmeo]

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.

[mrtmeo]

Update:
My mom is tolerating the Enteric Coated Mycophenolate Sodium and not nausea or vomiting, so going to continue with the equivalent of 750mg Mofetil.
The sodium version only comes in 180mg and 360mg which is equivalent to 250mg and 500mg Mofetil respectively.
I wasn't able to get the 180mg sodium version, so am using a 250mg Mofetil for now without any problems.

Also, I think the reason she may have had the vomiting and nausea from both Imuran and Mofetil could be due to dropping one of her two proton pump inhibitors.
She is back on two per day, so this might be why she is tolerating it, but not sure.

[mrtmeo]

I found this study that says that Mofetil GI intolerance is associated with a GFR <41.
My mom's gfr is only 27 at its best.

[Jaha]

Wow you would think that would put in the contraindications of the medicines descriptions. The doctors should also know that important information.

[mrtmeo]

Wow you would think that would put in the contraindications of the medicines descriptions. The doctors should also know that important information.

Hi Jana,
You would think the drs would know this, but they do lower the dose according to kidney function.
My mom's dosing was recommended as 750mg - 1gm per day max by her nephrologist.
Her Rheumy wanted her on 1gm per day, but she gets severe diarrhea with vomiting.

[Jaha]

I'm sorry your Mom has to go thru all the side effecst from cellcept and that is the only thing that they can use for her tx. She is so fortunate to have you as her advocate, as you do a lot of research and watch her reactions to medications very closely. Do you have a medical background? I really appreciate every thing that you share with us.

[mrtmeo]

I'm sorry your Mom has to go thru all the side effecst from cellcept and that is the only thing that they can use for her tx. She is so fortunate to have you as her advocate, as you do a lot of research and watch her reactions to medications very closely. Do you have a medical background? I really appreciate every thing that you share with us.

Hi Jana,
No, I do not have a medical background, but I learn everything I can about it, so that I can make an informed decision when getting my mom treatment.
My mom gets such severe diarrhea from 1gm mofetil that she is going 8 times per day.
Her body can't handle this dose nor the dehydration it causes, so I am doing a modified dosing to see if it works.
1gm mofetil every 4th day and 750mg the other days.
So far it has been 2 weeks, so crossing fingers this works.

The more we know the better we are equiped to ask the right questions and get the right tests and treatments to survive.
I just wish I knew earlier what I know now, so I try to pass on what I learn for others to find.

[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.

[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.

[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 :hug3:. 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 :hug3:. 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.

[mrtmeo]

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.

Hi Anne,
I try to use the like button when someone says something that is important or that I like what they said, too.
I also, sometimes use it to get to a different thread quickly when I have forgotten what the title was.

[annekat]

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. I don't really consider the red spots to indicate a flare, although they may show up during one. I notice them the most when I'm trying to taper pred, and my body has not gotten used to the drop in dosage, and maybe I didn't sleep well or am otherwise a little run down or stressed. I don't consider it a flare unless it continues for more than a few days and is accompanied by night sweats, markedly increased fatigue, a feverish feeling, and things like increased mucus, consistent blood in the mucus, and increased coughing. Then I see the doc, get my blood looked at, and get my meds increased. I think it is normal when tapering pred at the lower doses, as I am, to get some mild increases in symptoms that last no more than 2 or 3 days. My red spots seem capricious and there are usually just a very few of them, on one arm at a time, and they are mostly very small. I still have no red spots as I speak or any other troubling symptoms, and am sure I'm not currently in a flare. I plan to taper from 12mg. to 11mg. in about a week and down to 10mg. no later than the end of the month. I get blood work at the end of the month and see my doc in early March.

[annekat]

Blake, I, too was very unhappy to hear your mom's nephrologist had "given up on her" after only two months of RTX, and that he expected her to just "waste away". Now it sounds like that was not the same nephrologist as you have now. But the new one doesn't sound that great, either, if he seems not to be too concerned about getting her into remission since she has emphysema. If they are going to treat her as a lost cause, then why not take a chance on the CTX, to see if could improve her kidney function? Maybe they fear losing her due to the toxicity and then getting sued or whatever. But my understanding is that the toxicity of CTX builds up over time, so maybe a couple of good infusions a month apart or so wouldn't hurt her. I wish you could find a team where you live who is willing to consult with experts such as Dr. Langford or the docs at Mayo. And it would be nice to have someone who specializes in MPA, but I'd think any good vasculitis doc would know the differences between that and Wegs and be able to treat them both. I do appreciate the difficulty of getting your mom in her condition to anywhere at much of a distance. So maybe a consulting relationship would be the best. If you could just find local docs who would cooperate with that. Or I guess you said your rheumy had consulted with Dr. Langford. Maybe more than one expert opinion is in order with MPA, as it seems to be a lot less common than Wegs.
Happy Birthday to your mom from me, too! :hug3:And I don't have a problem with her not posting herself. There have been many on here who post on behalf of a parent, child, or spouse who is unable or unwilling to do it themselves.

[mrtmeo]

I don't really consider the red spots to indicate a flare, although they may show up during one. I notice them the most when I'm trying to taper pred, and my body has not gotten used to the drop in dosage, and maybe I didn't sleep well or am otherwise a little run down or stressed. I don't consider it a flare unless it continues for more than a few days and is accompanied by night sweats, markedly increased fatigue, a feverish feeling, and things like increased mucus, consistent blood in the mucus, and increased coughing. Then I see the doc, get my blood looked at, and get my meds increased. I think it is normal when tapering pred at the lower doses, as I am, to get some mild increases in symptoms that last no more than 2 or 3 days. My red spots seem capricious and there are usually just a very few of them, on one arm at a time, and they are mostly very small. I still have no red spots as I speak or any other troubling symptoms, and am sure I'm not currently in a flare. I plan to taper from 12mg. to 11mg. in about a week and down to 10mg. no later than the end of the month. I get blood work at the end of the month and see my doc in early March.

I hope all goes well on the descent of pred.

[LisaMac]

I'm so impressed by the level of caring here on this site. Bless all you caring souls!

[annekat]

I hope all goes well on the descent of pred. Thanks, Blake. I've had flares the last couple winters and had to increase the pred. This year seems different, knock on wood. :cool1:

[Debbie C]

I'm so impressed by the level of caring here on this site. Bless all you caring souls!

That's just us Lisa..get used to it,since you're part of the gang now ! :)

[Alysia]

some of the posts here made me "shrink". I was relieved to read later that the misunderstanding was settled.
please, my precious friends, you are all dear to me, to us, to each other.
please, let us hold hands, embrace each other, accept each one with his way of handling things.
I love you all. peace.