Tacro to belkacept switch

[Parkerbarker]

Well as i feared do to my sensitivitues to all meds the switch to bellacept has caused side effects.Im back to where i was jyst after surgery with the start of tge mycrophenolate/tacro where 10 minutes after i eat i get diarrhea and throughout the day experience spasming bowels so once again having to take the buscopan and anti diarrhea meds to live tgen it in turn makes me constipated a vicious cycle,plus super dry eyes and bad headaches fir 2.5 days after infusion and super tired for 2 days after too.They still have me on tacro with the bellacept for the first few infusions to stop any rejection from happening but being on both when the tacro was so bad for me i dont think is helping side effects.Luckily i niw know this too shall oass but it sucks having to go through the side effects bullshit again.I looked at myself in the mirror and thought jeez have i aged since transplant 7 months ago.

[StillKickingIt]

I’m like you with the sensitivity to meds. It’s been 26+ years (post TX), of suffering the same side effects. Of course I always carry my accessory meds; Zofran (anti-nausea), Pepcid AC 10 mg & 20 mg tabs, anti-diarrheal, PeptoBismol tabs, etc. You’ll find what works best for you. As time passes, your good days will far-far outweigh the bad days. I’ve accepted that this is the small price I pay for the gift of life.

Hold tight, time will mellow the side effects . Try to avoid changing or adding new meds and if you do, take note of the issues and talk with your nephrologist.

Enjoy your gift of life and freedom.

[WYOAnne NKF Ambassador]

For me it was changing from generics to Name Brand immunosuppressants. I take name brand Myfortic (Mycophenolate) and Neoral (cyclosporine). My diarrhea went away and am now 23+ years post transplant and doing great. My insurance charges more for name brand, but it is worth it.

[Bubba1995]

I had an issue with diarrhea back in 2016 and my doctor changed my meds from mycophenolate to mycophenolic acid (slow release), 350 mgs twice a day. I take that and cyclosporine, but that's all. I was in the hospital for two weeks as they tried to figure this out, but have not had an issue since the change. I've had my transplant for over 27 years now and other than several times with pneumonia and an RSV episode I've been relatively healthy. I know everyone is different and responds differently to meds, but after my med change I found an article by someone else who went through the same issue, but I didn't see it until after the fact. Hope this helps some, good luck.

[Rocknlily]

I'm sorry. Just wanted to say, you are not alone. I'm nearing 1 year post Transplant and still have side effects daily. I feel the same way about the aging. I've never looked so old. It doesn't mean we are not grateful. I am still grateful daily. It's okay to vent. Just keep finding things to be grateful for when you feel frustrated.

[Bax509 in reply to Rocknlily]

I've thought I aged 10 years after the last couple years - it's comforting (in a small way) to know I'm not alone in that.

[Parkerbarker in reply to Bax509]

Yes the transplant team definitely doesnt tell you that the rest of you ages and skin is like tissue paper any little scratch turns full blown bleed,hair is almost gone and the rest is like a straw bale.wrinkles like crazy.