Mouth Sores

[Guest guest]

Hi all -

I have been reading the posts about the mouth sores and thought I would throw in my 2 cents worth. I have had canker sores since I was a kid - not as often as an adult, but still get them occasionally and they are terrible. The pain and throbbing is constant and they do appear when the stress levels are up. My RD upped my prescription of MTX this and I'm just praying that it doesn't break me out in canker sores. So far, I've been on a very low dose (5mg/week) and they haven't bothered me. I am also on bi-weekly gold shots and 10mg of Prednisone/day. He wants to try to cut out the Prednisone if possible because of the side effects. I have only been on it about a month and while it has helped tremendously, my sugar levels are already up.

I have little or no P and my PA is mostly in my lower back and Achilles tendon right now.

Maureen in Tennessee

[ ] mouth sores

Hi Amy,

It is good to know that someone else noticed the mouth sores before medication. Could this be a new branch of the PA family tree? Thanks for the tip on mouthwash.

AllaynePlease visit our new web page at:http://www.wpunj.edu/icip/paThis past year had moderated a chat on arthritis at www.about.com on Thursday evenings and hopes to start up doing so again soon- we will keep you posted! Meanwhile, if anyone would like to start a weekly chat on egroups, please contact or . Thanks

[Guest guest]

In a message dated 02/14/2001 4:20:36 PM Eastern Standard Time,

beesnees@... writes:

<< two Vitamen E capsules, stuck them with a

pin and squeezed the liquid into a tiny container (the top of an old MTX

pill bottle worked well). To that I added a crushed Folic Acid tablet

and mixed well. I started applying this mixture topically >>

Barry - Right this minute I have an extremely painful mouth sore. I'm trying

this tonight - I'll let you know. Sure hope it does the trick as this sore

on the side of my tongue feels like it's as big as a house!!

Thanks for the info -

[Guest guest]

Barry,

Iwould like to add something else that works also for mouth sores. My dd ped. rheumy had pharmacy to mix benadryl,mylanta and lodocaine together for her mouth sores and that worked for her.

Ywellen

[Guest guest]

Andy,

My daughter's dr. had mixed benadryl and mylanta. Also gave us a mixture of benadryl, lidocaine and mylanta for her to gargle with and this really worked for her really well. Her sores were gone in a week.

Ywellen

[Guest guest]

In a message dated 2/23/01 11:01:20 PM US Eastern Standard Time,

ginsky@... writes:

<< (I did not try the vitamin e and folic acid thing yet--did that work

for anyone else?) >>

I was going to try, but mine cleared up - took about 5 days on it's own to go

away.

Remember, crush the folic acid very fine or it can cause more irritation

[Guest guest]

In a message dated 2/24/01 1:16:36 AM US Eastern Standard Time,

sweetpea200001@... writes:

<< My daughter's dr. had mixed benadryl and mylanta. >>

I remember now that my step-sister was given some mixture with mylanta or

something like that in it to for bad cold sores. Also, she was told to take

Lysine (a supplement sold OTC) to help. Not sure if that would be valid for

sores due to MTX but I don't think it could hurt

[Guest guest]

It seems to me that there was a post a short while back where someone

indicated success using Vitamin E and folic acid in a homemade ointment.

Was this for the sores, or for the P scales?

Re: [ ] Mouth Sores

In a message dated 2/24/01 1:16:36 AM US Eastern Standard Time,

sweetpea200001@... writes:

<< My daughter's dr. had mixed benadryl and mylanta. >>

I remember now that my step-sister was given some mixture with mylanta or

something like that in it to for bad cold sores. Also, she was told to take

Lysine (a supplement sold OTC) to help. Not sure if that would be valid for

sores due to MTX but I don't think it could hurt

[Guest guest]

Could you share what the vitamin E and folic is about with me. Also could someone please tell me what enbrel is? TIA and God bless,BJ

Re: [ ] Mouth Sores

In a message dated 2/23/01 11:01:20 PM US Eastern Standard Time, ginsky@... writes:<< (I did not try the vitamin e and folic acid thing yet--did that work for anyone else?) >>I was going to try, but mine cleared up - took about 5 days on it's own to go away.Remember, crush the folic acid very fine or it can cause more irritation

[Guest guest]

we have also used nystatin and found it wonderful. My doctor prefers the powder form that is in the bottle. yOu have to capsulate it because it tastes awful. He doesn't like the chemicals and other stuff in the liquid form....but if it works,,, great. kathy

rheumatic mouth sores

I have not posted much but I wanted to tell Sus, I have SD & I tried every remedy I could think of for mouth sores, & finally the dr. perscribed a liquid cld. Nystatin Oral Suspension & it worked after 2 applications. Cheers for a better day. !!

Lois Al.

To unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

I used to get a ton of mouth sores while I was growing

up. IT was awful!! Sometimes couldn't even talk. I

don't really know what to tell you. They had me try

everything from rinsing with peroxide to burning them

with septic stix. As I got older it seemed to be more

related to my hormones and I haven't had any in

several years now. Mine were definitely not related

to any meds though so I'm not much of a help, just a

sympathizer!!

Bethanne

__________________________________________________

[Guest guest]

In a message dated 12/5/01 4:37:38 AM Pacific Standard Time, bamrand@... writes:

I used to get a ton of mouth sores while I was growing

up. IT was awful!! Sometimes couldn't even talk. I

don't really know what to tell you. They had me try

everything from rinsing with peroxide to burning them

with septic stix. As I got older it seemed to be more

related to my hormones and I haven't had any in

several years now. Mine were definitely not related

to any meds though so I'm not much of a help, just a

sympathizer!!

Bethanne

Two possibilities come to my amateur mind, but you've probably thought of these: a vitamin deficiency (I think Vitamin B, but I'm not sure) or herpes (cold sores.) I imagine your doctor has already ruled these out. I, too, had sores in the corners of my mouth almost constantly when I was about twelve, and I never learned why.

Harper

[Guest guest]

I've just remembered that when I first began taking Prednisone at 80 mg and Imuran at 100 mg, I developed sores inside my mouth. They weren't anything as severe as you people describe, however. I was told they were a side effect of one of the two drugs -- I don't remember which. I was told that they would go away as the dosage decreased, and to watch for any sign of infection until they healed. They did go away, as predicted.

I keep thinking each message I send will be the last to the group, and then - - - . I do hope each of you will get a copy of one of the basic liver reference books, either by Dr. Palmer or Dr. G. Worman. They are inexpensive and invaluable. You may be able to find them at your local book store, or they can be found at amazon.com. Palmer's book is available for $11 on her website.

Harper

[Guest guest]

,

Yes the mouth sores go along with taking Prograf. The headaches are annoying but there. I am lucky to not have the headaches but I do get the mouth sores. Has your doc mentioned giving you Acylovir? My transplant team gave me Acyclovir which helped with the pain right away and then they had me rinse my mouth twice a day with a little bit of water and peroxide. Mine went away pretty fast. Just two crummy side effects from Prograf. Actually my docs wanted me to go on Rapamune but I refused because it has its own effect to much work for me. Oh the docs told me to use the peroxide every day but I only use it when the sores appear. It is a form of Herpes also a side effect created by Prograf. You may want to look into trying Acylovir made a big difference for me.

gayle/trans 6-99

galye@... q~q

^

[Guest guest]

Hi ,

First I'm glad to hear that your liver is doing fine! My 7th tx

anniversary will be in two more weeks.

I also take prograf but have no personal experience with headaches or

mouth sores. However, it's not that uncommon, I have heard reports

about these very things. I'll tell you what I remember, and hope it's

correct.

Headaches = reduction of prograf, often by combining with other drugs,

exactly what your docs are doing.

Mouth sores, I can't remember if people said they were treated with

antibiotics or antivirals. I do think in every case they were treated

with a drug. Unfortunately, we are more susceptible to these

opportunistic bugs. Some of these little buggers live in our system

and wait for the right time to attack us, ie: herpes, shingles.

If the sores are not improving or getting worse, I would call

transplant and get help immediately. Who is to say the sores will

stop spreading at your mouth, not to mention wrecking your lifestyle.

I hope you get relief soon.

Good luck,

Barbara Ann

tx 12/94

> Hi. My name is and I had a liver transplant on July 31,

2000

> at University Hospitals in Cleveland after a long bout with primary

> sclerosing cholangitic (PSC). Since then, all my liver functions

> have been fine, but I have, over the past 6 months developed

migrane-

> type headaches and multiple mouth sores which take 4-5 weeks to go

> away. My doctors think this might be due to the Prograf (anti-

> rejection drug) I am taking have partially switched me to Rapamune.

> The headaches are not a severe, but the mouth sores are getting

> worse. I have 5 now which prevent me from eating anything excpet

> liquids. Have any of you have problems with mouth sores and what

> have you done about it? Thanks for whatever information any of you

> have.

>

> Burrington

[Guest guest]

Thanks to all of you for your helpful comments!

[Guest guest]

Another thought is--it may be Thrush. I had a friend once who was on

whopping amounts of antibiotics. This also killed the good bacteria

causing the Thrush. You might ask your dr. about this possibility.

Joanna in WA state

AIH 8/01

> In a message dated 12/5/01 4:37:38 AM Pacific Standard Time,

> bamrand@y... writes:

>

>

> > I used to get a ton of mouth sores while I was growing

> > up. IT was awful!! Sometimes couldn't even talk. I

> > don't really know what to tell you. They had me try

> > everything from rinsing with peroxide to burning them

> > with septic stix. As I got older it seemed to be more

> > related to my hormones and I haven't had any in

> > several years now. Mine were definitely not related

> > to any meds though so I'm not much of a help, just a

> > sympathizer!!

> >

> >

>

> Two possibilities come to my amateur mind, but you've probably

thought of

> these: a vitamin deficiency (I think Vitamin B, but I'm not sure)

or herpes

> (cold sores.) I imagine your doctor has already ruled these out.

I, too,

> had sores in the corners of my mouth almost constantly when I was

about

> twelve, and I never learned why.

> Harper

[Guest guest]

Following up on an earlier discussion in which people said they had mouth sores:

If you have mouth sores, a sore tongue, a very sore throat, or a very uncomfortable esophagus, check immediately for the possibility of candida or thrush. White spots in your mouth are the classic sign, but they may not be present. Thrush can spread to your lungs, which is certainly undesirable!

Thrush is a fungal or yeast infection. It's most often found in babies, the very elderly, and people with compromised immune systems.

Thrush is treated with a course of anti-fungal drugs, which I've just begun.

Harper

[Guest guest]

Has anyone experienced mouth sores, like the MTX ones, from Enbrel? My rheumy

says there is a slight increase in sores on enbrel but they aren't common.

I have a nasty one.

[Guest guest]

,

Yes, you need a new doctor. It would not be surprising if you

really do know more about the medicines than he does! However,

finding a new doctor during treatment can take a lot of work and

energy. You might want to just insist to this doctor that you want to

stay on treatment. You may need to get more of your 'support' from

elsewhere - primary care doctor for example. You can also see a

dentist about the mouth ulcers. Often, if your insurance will not pay

for a medication prescribed by a dentist you can get your PCP to

prescribe it if your dentist will call him/her.

If you only have a few sores try an OTC medicine called 'Kanka' (I

THINK that is how it's spelled!) It numbs the pain AND forms a

temporary barrier over the sore so you can eat and drink. Re-apply

until the sores are healed. If you suspect thrush, try this home

remedy: Gargle 2 - 3 times a day with a concoction of 1 part water,

1/2 part hydrogen peroxide, add a very small amount of vinegar, and a

few drops of Tea Tree Oil. Swish around in your mouth but do not

swallow. Be aware if you do have thrush the skin under the patches

will be sore for a while. Once the fuzzy white patches are gone you

can eliminate the vinegar so it won't burn so much, but try to

continue using for several days. If it is just sores/ulcers you can

also use the above remedy between applications of the Kanka, but

leave out the vinegar. Also avoid any abrasive or salty foods which

can irritate the sores.

__________________________________________________

[Guest guest]

Barb-

had a couple of mouth sores when she first started taking mtx, but they were like cold sores or blisters.

Diane (, 3, pauci)

[Guest guest]

My Rheumatologist was out of town, so I went to a substitute a couple

of weeks ago. He had never seen me before, so asked alot of

questions about my symptoms. One of his questions was " do you get a

lot of mouth sores? " I was surprised to hear that question, as no

one had ever asked me that. In fact I do get them all the time (and

have for years) and all I had been taking for the last 4 years was

Ibuprofen. Lately I've been trying other meds, like celebrex,

sulfasalazine and most recently minocine. I wonder if the sores come

from the PA rather than the meds. I'll ask my regular rheumy upon

his return...

Sharon

[Guest guest]

Thanks for all the help with this. I finally found some Zilactin and

it helps some. I take my folic acid every day but the trip to the

dentist for a filling that turned into a cap really did me in. Also,

I have TMJ and last night I was up with my mouth pain again because

the jaw was tight and it felt like every tooth on the left side was

throbbing. Atleast the ulcers are starting to heal. I used some

moist heat for a few minutes to help relax my jaw muscles and it felt

good till I stopped. I go back to the dentist in a couple of weeks

for the permanent crown. It should be better after that. Cassie

[Guest guest]

> I was wondering if anyone with P or PA has a problem with

> mouth sores? I get awful mouth sores and when my joints are

> sore, it seems like my mouth breaks out with more mouth sores.

> My doctor says there is no connection. I was just wondering if

> this was something totally separate or if it could be from the

> P. Hope everyone has a great Christmas and Happy New Year.

>

I don't know if this could be related or not, but every time I have a

PA flare-up, it's almost certain to be accompanied shortly afterwards

by a herpes blister - either on my behind or on my upper lip (no

snide remarks please! ;-), and sometimes even both at the same time -

and always at exactly the same spot(s)! Of course a herpes blister

can also occur on its own, but it's usually when I'm under some sort

of stress - either physical or mental.

I've learned to recognize the first signs of a herpes outbreak, and

immediately start taking Valtrex (500 mg bid for 5 days). Valtrex

makes a HUGE difference. Instead of becoming a painful blister,

ulcerating and then forming a scab that's likely to turn into

psoriasis, it fades away almost as quickly as it came. The trick is

to take the Valtrex AT THE FIRST SIGN of a herpes outbreak. NOTE: I'm

not implying that your mouth sores are related to herpes, because

herpes always occurs externally as far as I know. This is just

general info for anyone who may be faced with the same thing as me.

Herpes always starts out with low-grade flu-like symptoms (at least

in me). Whenever that happens, I always feel the spots where herpes

occurs with my finger tips. If I can feel a bump (even though nothing

is visible on the skin yet), I immediately start taking Valtrex. I

figure it's better safe than sorry, and so far I've always been right

about taking them. My dermatologist keeps me supplied with Valtrex,

so I always have some on hand.

-- Ron

[Guest guest]

Are you taking MTX?

If so maybe using Folic Acid would help.

Thanks,

in Atlanta, GA

--- <cmbearr@...> wrote:

> I was wondering if anyone with P or PA has a problem

> with mouth sores? I get awful mouth sores and when

> my joints are sore, it seems like my mouth breaks

> out with more mouth sores. My doctor says there is

> no connection. I was just wondering if this was

> something totally separate or if it could be from

> the P.

> Hope everyone has a great Christmas and Happy New

> Year.

>

>

>

[Guest guest]

This statement usually raises an eyebrow but everything between your lips and

the other end of your digestive tract is actually external to the body but

surrounded by the body. Once you grasp that you can easily see that the

lining of the mouth, stomach and intestines is actually skin with a much

different type of sweat. haha So it stands to reason that if you get

psoriatic lesions on the outside skin then it may be affecting the enclosed

skin as well. Psoriatic lesions in the mouth seems to be quite rare

thankfully and maybe that is result of constant moisture which undoubtedly

improves my skin. I've found an abstract of a study on the small intestine

that showed the villi are shorter in psoriatics. I asked a med student at

the derms office whether the reduction in surface area caused by shortened

villi could cause any nutritional deficiencies due to decreased absorption

potential and he said " No I dont think so, youre a healthy young man " His

opinion on the shortened villi was that there is a higher turnover rate of

the intestinal lining just as it does on the skin. Well I dont feel so

healthy. Maybe I should have stripped and showed him that it wasnt just that

spot on my shoulder and fingernails. He had a chart to map out all the

lesions on but didnt take the time to fill it out or even ask to see. I

havent been able to find the full text on that psor/intestine study or any

text which describes just what all gets absorbed in the upper small

intestine. Anyway I am wondering if some insult to health like major

infection or trauma causes a problem in the intestine that then prevents

absorption of some nutrient necessary for repairing the abnormal intestine? I

recently came across a dietary supplement that a few people are praising for

its benefit to psor so I kept hounding for more information about it. It fits

with some nutritional things I have experimented with that seemed to help

quite a bit with the arthritis but not so much for the skin. I may be

experiencing spontaneous remission so I cant with confidence say what I tried

made the difference. I havent had any noticable deformation of joints and the

arthritis has been on and off but the skin has been stable and steadily

worse so if the stuff makes a difference to the skin then that will be proof

to me. The guy that came up with this product finally sent me an email and he

is saying a lot of the things that I have found too. I'm thinking about

trying this stuff but it comes from South Africa where I suspect the laws on

ingredient disclosure arent as strict as in the USA. It looks like this

company is just getting off the ground so maybe they just dont have the money

to go through clinical trials to prove it works. I wouldnt mind taking a

shot at it but I just have doubts because of things like skincap that say

they are some all natural herbal mixture and it turns out that undisclosed

steroids is actually the reason why they work. So they have you using

something that you cant research and watch for possible side effects. Does

anyone know how to get a substance tested for things like steroids? I looked

around on the FDA site but couldnt find anything about how to get them to

test something. Orin

[Moderator's note: Good point on the digestive tract Orin - topologically

speaking, we (and all other multi-cellular creatures I'm aware of) are

cylindrical like a pipe! ;-) Regarding testing for steroids - you might try some

sports or athletic organization. They routinely do testing of athletes for

steroids, etc. Ron]