Ongoing side effects

[Santaponsa1]

Hi, im post op 3/1/2 years now and experiencing ongoing diahorrea for over 1/1/2 years and I've seen a gastroenterologist end Oct to be told by him I've IBS and it'll sort itself out, but def hasn't for still above problem daily and it's physically and mentally draining. Transplant team changed me to Myfortic last oct as they feel it normally settles it down, but to no avail and now 9 months on and my wbc is now dropping and has done since recent two blood tests 6 weeks apart. I also feel very nauseas when it comes to mainmeals and have been a couple of times, and I've lost a lot of weight, side effects with both the above is showing on form within med box and its sole destroying.. Anyone else experienced this horrible problem all this time down the road. Any feedback will be very much appreciated.. Thanks in advance..

[Mgt8]

Morning,

Sorry to hear you're having problems. The only experience I have of this is in my first months after transplant.

What worked for me was the consultant reducing my Mycophenolate from 500g twice a day to 250g twice a day and I have been on this dose ever since. (18months post transplant now)

I would keep contacting your kidney team for advice until they get it sorted.

Good luck with it....

Best wishes...

Mgt

[Santaponsa1 in reply to Mgt8]

Thank you Mgt8 Take Care

[smashandgrab]

Sadly I am having the same problem and my kidney team seems unsure what is causing it. They have reduced my statins but I am on steroids and wonder if it could be these as have been on them the same amount of time . Unfortunately I have the BK virus so they cannot take me off them.

[Santaponsa1 in reply to smashandgrab]

Thank you. Take Care

[JoanC645]

Hi, I am only 6 months post transplant and have the same issue. Have hardly left home. I was changed from MMF to Myfortic, but this did not change anything. This is my second transplant. My first was 21 years ago - I was on ciclosporin, azathiaprine and prednisalone, and did not have this problem. I am on Advagraf, Myfortic and Prednisalone now and have had diarrhoea, stomach cramps, wind etc since my 2nd transplant. I have the option to change from Myfortic to Azathiaprine, but my kidney results are all great, so I am scared to change.

[Santaponsa1]

Thank you. I ended up in hospital last weekend until Thursday afternoon last week as it started having an impact on my renal function ( first in nearly two years and gutted) Diahorrea ended up dehydrating me and I needed a full replacement of my U and E's and things settled down again🙏🏻 I have been diagnosed with Chronic IBS and now at long last being treated for same. It's been one long nightmare hopefully now at the end.. I drink pints and pints of water even through above and dehydration and extent of same overcame everything. Initial never affected me,however did now, but all back to normal and I can eat normal again and putting on weight. Oh to live normal again.

Thanks again Jackie for replying and please do look after yourself for I was that soldier. All the best. Take Care.