Hello, long story short: 2yrs 7 mths post transplant, awful 2 yrs of repeated bile duct infections, stenting, leading to bile duct reconstruction & bowel resection.
Kidneys now struggling with Adoport. Level reduced & yesterday told I’m going through bout of rejection but can’t increase Adoport due to kidneys.
So, now going to duo suppression with MMF. Read so many awful side effects. Sickness, diarrhoea, hair loss. Since TX I’ve suffered all 3 and not keen to make things worse.
I’ve not had an easy time post TX & I am reluctant to introduce a drug that’s going to add another level of trauma.
Anyone with any similar experience or knowledge of MMF?
Thankyou
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Braveheart65
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Basically MMF, or Mycophenolate Mofetil, is just an additional immune suppressant that is used in combination with an another. The protocol of using the two together is less impactful on the kidneys as you can use a lower dose of another immune suppressant that otherwise would harm the kidneys more. Its known as a "Kidney Sparring" protocol and actually can be more effective than using a single immune suppresant. Those that had known kidney issues prior to transplant, or are at higher risk post, tend to be put on this protocol.I've been on Mycophenolate with Tacrolimus since transplant for this reason. There can still be some kidney impact, but it tends to be less than otherwise would be the case.
I've had no issues from the mycophenolate, except for seeing a very low neutrophil count early on. This was resolved by reducing the dose and all has been fine since.
Now I am going a bit thin on top, but that's genetics and nothing to do with any meds. That started way before transplant, lol, but hasn't really increased in rate at all.
Hi, similar to Kristian, have been on mycophenolate from day one, alongside prograf, and no known side affects, other than making my hair more grey!! Been four years now!!
Reading journeys like yours is very sobering. I do hope it gets better for you. Andy
Hi, 6 years post I've always taken Tacrolimus and Mycopenolate, kidneys were badly damaged within weeks of my transplant due to Tacrolimus and valganciclovir only take 0.5mg Tacrolimus twice daily but have to take 500mg Mycopenolate so they can keep dose of Tacrolimus low. Only problem I have had with Mycopenolate is low wbc, have stopped taking in a few times but then go back on it when wbc goes up. Trust in your doctors they do what is best for you, you have to protect your kidneys. If you use Facebook please feel free to join our friendly and knowledgeable group called liver transplant support uk, thousands of people that have been in your situation.
Hi there, I was taken off azathioprine at 3 months and switched to MMF. I am 13 months post. It has been fine for me. It gives constipation for me so dates and prunes are my new friends. Some have the opposite. I had hairloss when I was on azathioprine but I think that happens post transplant whatever you are on. Hair started to grow normally and well at 6 months. I have been fine , and more importantly, kidneys have not deteriorated since switching.
Thanks for reply. I was on Azo too but suffered joint pain so took me off & been on Tac on its own for 2 yrs or so.
Ive had severe hair loss which has regrown to about 70%. I’ve spent 2 yrs vomiting for 2/3 days a week with constant infections due to cholangitis. The surgery to rebuild the bile duct wasn’t straightforward as stent had migrated so I lost a bit of bowel. Then had a bleed at surgery site which became infected. I had to drain it at home for 3 mths then had over granulation so wound didn’t heal well.
The liver never missed a beat during all of this. But my kidneys have been struggling throughout. Now to learn that my ALT is worryingly high all of a sudden, is really upsetting. I’ve also been diagnosed with PTSD like issues due to my experience post TX.
I know Im not looking at this positively but im tired.
You have had a rough ride. I had bile duct issues but on the removal of the third stent, it settled. If it hadn't, I was due for what you had as a procedure. I am not surprised to hear you have PTSD. I hope you get some support with that. I hope things begin to settle. I really wouldn't worry about the MMF at least. At Addenbrookes, it seems to be a much more standard drug of choice very early on, if the kidneys are struggling. Best wishes. Do keep your heart Brave as your name suggests xxx
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Ercp & STENT
Bile duct problems post tx
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