Myfortic Friends

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Comment by Cindy yesterday

I was on Myfortic until I came up positive for BK virus, then I was taken off it completely and my prednisone was doubled from 5 mg per day. This has allowed my immune system to work on getting rid of the BK and so far so good. I don't know if/when I will go back on Myfortic. Earlier this year my dose was lowered for a while due to low WBC.

Comment by Roxeal yesterday

OH - ONE more thing - I had the worst stomach pains sometimes with the myfortic - until I finally figured out to take it on an EMPTY stomach, so it goes down the tubes before food gets in there and it can dissolve in my tummy.  If I take it with food, it's awful.  It has to have a clear path to the bottom of the stomach so it can get out of there.  Doctors never mentioned it to me that I could remember.  The problem I have tho, is that I am supposed to take all my meds at the same time, especially when I do med level blood tests, but I cannot take myfortic before/with/after food, and I cannot take cyclosporine without food (it's really icky on an empty stomach, makes me feel ill).  It's always a juggling act, and really can mess up my meds schedule.  The times that I forgot all my meds (not that often), my body was so happy not to have that junk in it, I could feel it.  Would so love for them to finally produce the sythetic kidney and get me off these nasty drugs and actually feel really WELL for the first time in decades, like healthy and clean and normal.   Here's some links on the topic:  http://www.telegraph.co.uk/health/healthnews/8443740/Scientists-cre...

http://www.siliconindia.com/shownews/Indian_origin_creates_first_im...

Popular Science is one of my favorite magazines, learn about cool stuff like these inventions and breakthroughs all the time

Comment by Roxeal yesterday

Oh, and on a side note - I often get very quick relief from GI issues if I take a bit of 5ppm colloidal silver.  I think a lot of the time I have extra bacteria in my gut from food or whatever, and it makes me have like a constant touch of stomach bug type symptoms.  The silver is great - I use sovereign silver - but ONLY when I have something to fix, not just every day.  

Comment by Roxeal yesterday

When I first started taking myfortic, along with cyclosporine, etc., my GI/gut issues were really bad, and I was malnourished and thin.  I finally started to eat that Activia yogurt every day and it got better for a long time. Now it is getting bad again, and my other friend had the same thing happen, after 2-3 years her gut couldn't take it any more.  I am trying to hang in there.  I had two rejections at first, and one of them was probably from them not taking me off the Prograf.  No matter how much they gave me, my blood levels wouldn't go up - my body kept rejecting the med which left me not immunosuppressed enuf.  It also made like 80% of my hair fall out or so, and when it grew back, it was super kinky and fuzzy and awful.  It ruins the hair follicles that way, it seems.  

Comment by Judith on March 10, 2012 at 8:38am

I was just switched to Myfortic from Cellcept las year due to my terrible stomach issues.  They said this is slow releasing and would help (which it has) The problem I am having is, I have had CMV twice this past year since my WBC gets so low.  I have had to be on Valcyte most of the year as the CMV came right back after they thought it was gone.  I have low WBC issues as well.  As far as feeling better, I certainly do.  I just worry if it is hard on my kidney as my GFR has gone down too.

Comment by Jennie on March 9, 2012 at 6:11pm

Wow once again I am clueless.  I have the same issues with bathroom stuff but assumed that i was coming down with something.  Now you all have me thinking differently.  I go to my doctor in a couple of weeks and will ask about the meds. 

Comment by Michael D Marusevich on March 9, 2012 at 4:48pm

On cell cept I had the same, nausea, the runs, and had no appitite. On Myfortic now and feel so much better

Comment by Denise D on March 9, 2012 at 3:22pm

I was on cell cept at first but my WBC went haywire, PLUS I had sever tummy woes, lots of BathRoom trips, had me dehydrated.. so I'm on 180 myfortic twice a day, seems better but I still get bouts of diarrhea & belly woes..

Comment by Sheila Boyd George on February 18, 2012 at 12:03am

I have had an issue with low white count repeatedly.  It was explained to me that they have to do a balancing act between suppressing your immune system enough to avoid rejection, but not too much where you cannot fight off infections.  My Myfortic dose has repeatedly been changed, currently on 1 pill twice a day.  They will also adjust my Prograf and/or Valcyte also for these reasons.

Comment by Kristy on February 17, 2012 at 11:31pm

Does anyone understand this drug??? I sure don't.  I was sent home post transplant on 6 pills a day.  Made me ridiculously ill w/nausea and vomitting.  The docs lowered the dose to 4 a day, which made life tolerable but still an angry stomach.  Now they are blaming it for a dramatic drop in my white blood count and have taken me off of it twice for 4-5 days each time.  I am currently on 1 pill a day and when I saw docs on Wednesday, they told me my white blood count was up to 2,1 ( still low, but drastic improvement) after being off the myfortic.  So, they are keeping me on one pill until next weeks labs, then plan to increase the dose if white blood count goes up.  I know this is an antirejection med, so how can I keep going off of it?  I really think the docs are guessing, as they don't really know enough about pancreas only transplants.  They say there are very few indicators of rejection,(if lypase and amylase are good, thats about all they can go on) so they tend to be overprotective.  Is this normal to have low white blood count?  How long is it safe to keep pulling me off this med?  Is there what is considered a normal or average dose?  I just dont understand this med. . .

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