I stumped the best minds at Mayo-not a good thing

[Guest guest]

Finally maybe I can help someone else on this board out!! Sounds like mucusitis. My daughter use to get this and couldn't even swallow her saliva from chemotherapy agents such as methotrexate, 6mp, adriamycin, cytoxan, ARA-C (the worst) and others. Have you tried swish and swallow--it is a coating agent but I don't know exactly what was in it. The kids getting heavy duty chemo had to take it daily 3 x a day to prevent mouth sores and then when they used it, it could coat. Eating was too painful though at times with mucusitis so they would give her TPN through the broviac. The sores went from mouth down through all the intestines and even rectum. Maybe you can see if any of your meds have a side effect of causing these mouth sores??

Hope ya feel better soon!

See what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

I've been suffering from a killer sore throat since before Halloween.

Eating is excruciating. I can hardly swallow, and some of the worst

lesions look like big holes in the back of my throat. I've lost seven

pounds in two weeks just because eating is too painful. Sleep is

nearly impossible, too. Vicoden helps a little, but I don't like

loading up on pain meds, and I certainly can't take that during the

day and hope to remain functional.

At Mayo this week, they cultured for everything...strep, staph, herpes

simplex, fungus, cmv, etc., and everything came back negative. Now,

they want me to get a biopsy of the affected area because they can't

figure this out.

I'm wondering if this could be a crohns flareup that is taking up

residence in my mouth this time. I know my immunity is down because

of Remicade, but I would think that an opportunistic infection would

show up on one of the cultures.

Has anyone here gone through anything similar? It's frustrating to

have this level of pain, and the fact that multiple doctors at Mayo

can't get a handle on this makes it that much worse.

Tom

[Guest guest]

My husband had shingles or (herpies a form of chicken pox) down his

throat for weeks..

Massive antibiotics was the answer. Extremely sore throat for ever

till wounds healed.

Laurie

[Guest guest]

-----Original Message-----

Have you tried swish and swallow--it is a coating agent

but I don't know exactly what was in it.

,_._,___

This medicine is “Nystatin”

they use it to treat fungal infections in the throat. Ken had to use it for several weeks post

transplant. You take it three times

a day and at bedtime.

Barb in Texas - Together in the Fight, Whatever it Takes!

Son Ken (33) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in Dallas

[Guest guest]

The swish and swallow may have been carafate or sucralfate, it is an antiulcer agent for the mouth and gi tract that is used for mucusitis. Nystatin swish and swallow is used for fungal infection.

Re: I stumped the best minds at Mayo-not a good thing

Finally maybe I can help someone else on this board out!! Sounds like mucusitis. My daughter use to get this and couldn't even swallow her saliva from chemotherapy agents such as methotrexate, 6mp, adriamycin, cytoxan, ARA-C (the worst) and others. Have you tried swish and swallow--it is a coating agent but I don't know exactly what was in it. The kids getting heavy duty chemo had to take it daily 3 x a day to prevent mouth sores and then when they used it, it could coat. Eating was too painful though at times with mucusitis so they would give her TPN through the broviac. The sores went from mouth down through all the intestines and even rectum. Maybe you can see if any of your meds have a side effect of causing these mouth sores??

Hope ya feel better soon!

See what's new at AOL.com and Make AOL Your Homepage.__________________________________________________

[Guest guest]

Tom,

Sorry to see something else pop up on your medical resume. It is amazing all the

extra difficulties PSCr's seem to be burdened with. And the variety of maladies

is remarkable. We hope the doctors eventually get things figured out. All the

best Tom.

Tarheel Tim

[Guest guest]

My husband has Crohn's but not PSC and he has had this problem

before. He was on several medications. It was about 5 years ago,

before I became so medically savvy and kept track of everything.

Sorry that I can't be of more help but it very well could be Crohn's.

Hope you get better soon!

24 in Nebraska

PSC 8/07

PBC 10/06