Sirolimus - mouth sores!

[Denise-80]

Oh my goodness!!! My transplant meds were recently changed to sirolimus, Bela and low dose prednisone. I have developed these incredibly painful mouth sores! Makes eating difficult. I was prescribed valcyte and magic mouth wash neither of which seem to be very helpful. Anyone else out there experienced this? What did you do? I’m not crazy about switching meds again (I can no longer take tacrolimus). Any thoughts/suggestions?

(Sorry if this is a duplicate; I tried to post last night, but I’m not finding it.)

TIA!

[KathleenMA]

This happened to me about 10 weeks after transplant, it was so awful! I was on tacro and cellcept, high doses obviously. I’m sorry you’re going through it too. I saw so many different doctors and dentists who kept trying different mouth washes including the two you’re trying, they didn’t work. I then went to an infectious disease doctor who finally gave me an ointment and that did the trick (or maybe it just ran it’s course). I finally got rid of them after 8 weeks. It was 6 years ago and I don’t remember the name but if I can find it in my medical records, I’ll hop back on.

[Denise-80 in reply to KathleenMA]

Thank you Kathleen. I would love to hear the name. The doctor is stumped with what to prescribe. I cannot believe I’m the only one at my center that has experienced this. They are trying though. Already decreased my med by 25 percent…didn’t work though.

[KathleenMA in reply to Denise-80]

Hi Denise, I checked my patient portal and the records only go back to 2017, my transplant was in 2016. Sorry about that. I’ll hunt around some more but I don’t think I’ll come up with it. I can’t even remember the doctor’s name but I know she was in infectious disease. I really feel for you, it was so painful and I lost 6 lbs which isn’t ideal right after transplant.

[Denise-80 in reply to KathleenMA]

I’m 3 pounds down already! I will suggest the infection disease doc. Thanks again!

[Randy1805]

I had what they called burning mouth syndrome. And also had thrush, mine was caused from valcyte.

[Denise-80 in reply to Randy1805]

Thanks for sharing that. Good to know!

[Randy1805]

Did you start the valcyte before or after your burning mouth?

[Denise-80]

I started valcyte after the sores, with the intent to treat.

[redpanda67]

Hi Denise-80,

That is very unfortunate. While there can be many causes of mouth ulcers in immunosuppressed individuals, this is one of the most common side effects of the mTOR inhibitors everolimus and sirolimus. It's called mTOR inhibitor-associated stomatitis (mIAS) and unfortunately, the best treatment is one of the magic or miracle mouthwashes. There are a wide variety of different mouthwashes. The typical magic mouthwash contains an antifungal, hydrocortisone, and benadryl. However, there are other versions that contain stronger steroids and even in some cases oral steroid rinses.

Mouth ulcers are also common in people undergoing chemotherapy, so there are lots of different options. See if your transplant team will reach out to the oncology department and find out what they use with their patients.

If I can offer anything encouraging is that my experience with sirolimus has been nothing but positive, other than needing to add a statin because of the cholesterol. I've had minor mouth ulcers a few times, but nothing as severe as you are experiencing.

Good luck.

[Denise-80 in reply to redpanda67]

Thanks redpanda67 - This med is way better than tac for me. While on tac my heart would race while I was just sitting. No racing heart since coming off tac though. My team put me on a dental paste (Orabase w/ Triamcinolone) that helped within a day. The mouth sores are almost gone and I’m eating again. My lead doctor also contacted an oncologist who recommended a mouth wash (Decadron). I have not tried the Decadron yet… hoping I will not need it. Thank you for replying…not many of us are on sirolimus.

[ILMA54]

I got mouth sores in January after my white blood cell count crashed. It had been hovering around 4 and then dropped to 1 over the course of two weeks. They cut back my Valcyte to 450 mg and also lowered my Mycophenolic acid and gave me magic mouth wash. It worked for me, but it didn't keep me from occasionally biting my lip. It improved on the lower dosages. Hope that helps.

[Denise-80 in reply to ILMA54]

Thank you ILMA54 - It’s interesting that I was prescribed the valcyte to treat the sores when it contributed to the sores for you and Randy1805. I think my team was just trying everything to get me some relief. I’m glad the lower dose meds worked for you! Have a good evening.

[ILMA54 in reply to Denise-80]

I was originally put on 900 mg of Valcyte following my transplant because my donor had previously had CMV. I stopped Valcyte after a 9 month course of treatment.

[LisaSnow in reply to ILMA54]

The valcyte is to prevent viruses like EBV surfacing while your anti rejection medication dose being high. However, it is well known that valcyte can lead to increased through level of tacrolimus, which was why your white count dropped. Medication didn't exactly "cause" ulcer in the mouth. The ulcer surfaced when immune system lowered and virus activated. It is a tricky balancing act for the doctors to give the drug combo with most protection while preserving adequate host immunity.

[gardengirl97301]

Hey! I have had mouth sores! They were awful. It took me a couple months to put it all together that this wasn’t normal. I use Biotene mouth wash twice a day. That has helped tremendously. I think spicy food really aggravates them.

I did talk to my nephrologist about them and she said because our immune system is compromised we can get all sorts of weird little viruses. She said she could give me something, but if the mouth wash is helping I didn’t want to take any other drugs.

[Denise-80 in reply to gardengirl97301]

I will try biotene! I really appreciate your response. Thank you!!

[gardengirl97301]

I actually use Oragel Mouth Rinse. Biotene works good too.

[MerciBeaucoup12]

Juven (a nutritional powder drink that supports wound healing) may have helped to clear mine up. It’s available on Amazon (a bit expensive).