Mofetil - no more choices?

[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.