@jackie421blfdgurl, I am so-o-o sorry to her of this miserable condition that you are experiencing.
I am a patient like you, and I take Tacrolimus as one of my immunosuppressant medications. When my tacrolimus doses are changed it is in small increments. And I have to repeat my labs in order to monitor the effectiveness of the change.

Is there a reason, that you know of for the big change in Tacrolimus doses?
According to your words, "Out of my Mind", I can only try to imagine your misery. I highly suggest that you contact with the doctor or pharmacist about what you are experiencing? Does that sound like something you can do?
Oh - and also mention the cold sores. You might need a prescription medication if there is any infection involved.

Will you let me know if you get an answer or any relief?
Hugs,

I’ve had oral ulcers for three months, nystatin helped a little, but they come back worse. I’ve started rinsing with warm salt water and swishing a few drops of tea tree oil in a little water (don’t use full strength). It seems to be helping so far. I hope you find relief soon!

Hi, I've been reading on this site for several months and have learned a lot, but have not commented before. I wanted to pass this on because it helped me tremendously and I sympathize with anyone who suffers with painful sores.

I developed mouth sores on my lower gum and the underside of my tongue 4 months post transplant. They are extremely uncomfortable and make it difficult to eat and sleep. The doctor advised me that mouth sores can be a side effect of both Sirolimus and Mycophenolate that I'm on and ordered Oracorte 0.1% (the tube says Triamcinolone Acetonide Dental Paste USP, 0.1%). It is a thick ointment that you dab directly onto the sores. Seems to have an analgesic effect once applied as well. Clears the sores up within a few days. Now at the first sign of a sore developing, I apply the ointment and it clears up right away.

The doctor said they're not cold sores because cold sores don't develop in the mouth, they develop on the lips or other mucous membranes. Cold sores are a form of herpes and require an antiviral like Zovirax cream/ointment or oral medication. I have a history of cold sores going back many years and surprisingly haven't developed any since being on immunosuppressants. I do have a tube of Zovirax on hand since I can recognize a cold sore if I get one and will treat accordingly.

Jackie, I meant to ask you about your upcoming incisional hernia repair and got sidetracked with mouth ulcers and forgot. I also have hernia (s) that need to be repaired. They wait at least 6 months post transplant for any nonemergency major surgeries and it was 6 months on April 15th that I was blessed with the gift of life!

I recently had an ultrasound done and it shows an epigastric hernia, as well as an umbilical one, and possibly one on the right side of my abdomen near the incision line. The abdominal hernia diagnosis was not conclusive with the ultrasound imaging, but there is a lot of bulging on that side so it's likely. I have been referred to a general surgeon and he ordered a CT scan (April 30th) and I'll see him on May 13th. I haven't actually seen the surgeon to have the opportunity to ask questions. My transplant team doctors refer me back to him because it's not their specialty, which is fair.

Do you know which type of surgery you'll be having? I researched and it said there are three types: open hernia repair, laparoscopic hernia repair and robotic hernia repair. Also, will you have to be hospitalized, or will it be a day surgery? I dread the thought of being hospitalized again, but if it requires admission to the hospital I hope I will be in and out ASAP. At any rate, I assume it will be a lot easier than transplant surgery!

Also, curious about your immunosuppressant meds with your upcoming surgery. Do you know if they'll change your medications before surgery? I'm on MMF (1000 mg twice a day) and Sirolimus (2 mg once a day). No longer on Prednisone. Apparently Sirolimus can cause problems with wound healing which may have contributed to the hernias (Tacrolimos caused severe neurotoxicity) so I'm wondering if they'll change anything. I'm sure it's all individually based at the discretion of our expert teams, but I'm still curious about others experiences. Thanks, Jackie or anyone else who has had a hernia repair post transplant and would like to answer my questions or offer advice! Sorry for writing a book, I tried to condense it but I can see t's still really long 🙂