Mouth Sores

[Guest guest]

OOohhh , that doesn't sound fun at all. Good luck with the surgery,

here's hoping it works out for you alright!!

Blessed Be!

Crystal

>From: " CTNATIVE@... " <CTNATIVE@...>

>Reply-

>

>Subject: [ ] Mouth Sores

>Date: Mon, 08 Nov 2004 22:55:43 -0000

>

>

>

>Mouth sores are quite a common side effect when you are taking

>Methotrexate. Luckily they are easily cured by a daily dose of folic

>acid. My doc always had me take 1 mg right from the beginning on the

>methotrexate. Check with your rheumy and see what dose they advise.

>

> S

>group founder

>

>ps I will be " off line " for a couple of weeks beginning December 13,

>I will be going into Columbia Presbyterian NYc for a Total Knee

>Replacement.The doc says three days on the ortho surg floor, one week

>on rehab, and then the VNA PT at home should do it! Wish me luck!

>

>

>

>

>

>

[Guest guest]

Dear , good luck on the knee surgery. Let us all know how you are

doing. We care about you and also I know some members are facing this

surgery in the future. Thanks again for bringing this great site to all of

us. You are an inspiration to us all. Get well soon. All my love, Fran

Re: [ ] Mouth Sores

Dear All: S (see below) is the founder of this group. I am

sure

you all join me in wishing the very best during the months

ahead.

Kathy F.

In a message dated 11/8/2004 6:00:03 PM Eastern Standard Time,

CTNATIVE@... writes:

Mouth sores are quite a common side effect when you are taking

Methotrexate. Luckily they are easily cured by a daily dose of folic

acid. My doc always had me take 1 mg right from the beginning on the

methotrexate. Check with your rheumy and see what dose they advise.

S

group founder

ps I will be " off line " for a couple of weeks beginning December 13,

I will be going into Columbia Presbyterian NYc for a Total Knee

Replacement.The doc says three days on the ortho surg floor, one week

on rehab, and then the VNA PT at home should do it! Wish me luck!

[Guest guest]

Hi -- Good to hear from you. I certainly wish you all the luck you

deserve with your knee. Let us know how it turns out. Hugs, Cheri

" CTNATIVE@... " <CTNATIVE@...> wrote:

Mouth sores are quite a common side effect when you are taking

Methotrexate. Luckily they are easily cured by a daily dose of folic

acid. My doc always had me take 1 mg right from the beginning on the

methotrexate. Check with your rheumy and see what dose they advise.

S

group founder

ps I will be " off line " for a couple of weeks beginning December 13,

I will be going into Columbia Presbyterian NYc for a Total Knee

Replacement.The doc says three days on the ortho surg floor, one week

on rehab, and then the VNA PT at home should do it! Wish me luck!

[Guest guest]

Hi ,

Hope the surgery goes smoothly and you make a quick recovery.

Good luck,

[Guest guest]

Hi Kathy,

I have just mailed wishing her luck and I knew that she was one of

the founders but I completely neglected to thank her for starting this group.

So, , thanks for being one of the main players in getting this off

the ground. You should take particular pleasure in knowing that you are

responsible for helping currently 2000+ people to be able to cope with this

disease

a bit better (a lot better in some cases) that they had been doing

previously.

Good luck again with the knee op. If there was any justice you would be

dancing out of the hospital.

[Editor's Note: certainly deserves the gratitude of all 1934 members

of this list. I, for one, would not be as healthy as I am today if this list

hadn't been there for me - giving me knowledge, support, wisdom and strength.

Thanks, ! Kathy F.]

[Guest guest]

,

Wishing you all the luck in the world!

Thank you for having the inspiration and energy for starting this

site.

Suzie

[Guest guest]

Hi ,

My daughter had an episode on the Friday before her T & A. I gave her a dose

of Orapred on Friday morning and then again on Sunday night, because her

fever rose again. She went in for surgery on Monday morning without any

problems. DO NOT give any Ibu as it is a blood thinner and, according to our

surgeon, could not be given within 2 weeks of surgery.

This was only the 2nd time that I had used the oral steroid, the first time

to confirm the diagnosis. It did seem to quicken the episodes but we used it

the second time to arrest the fever because she had already had a febrile

seizure and we did not want to allow that to happen again. It was terrible

for everyone involved.

My experience, having a lot of mouth sores as a child, is that swishing (and

spitting out) hydrogen peroxide will help the sores heal quickly.

Mom to Kira – 20 months

Mouth sores

Hi,

Hayden is having an episode without a high fever, 102 , but the

sores in his mouth are horrible. His mouth is all sores and just a

little mouth. I have never seen this in him before. His face is

swollen and he can barely swallow. I am nervous, about his airway.

I need some remedies if anyone has any. I can feel the sores on the

inside of his cheeks from outside his mouth. Has anyone had sores

this bad?? What do I do??

I used the pred for the last 2 episodes, but he is scheduled for his

T & A on the 2nd of December. I was concerned about giving it to him

so close to his surgery. Did using the pred cause the symptoms to

be so much worse. I've only used it twice. It was about 3 weeks

between episodes.

Fran, should I be concerned about giving Ibu and Tylenol so close to

surgery? Does it matter? So many questions.

[Guest guest]

Hi! My son Jordan, age 12, had an episode a few days prior to his

tonsillectomy and the surgeon told me to go ahead and give the Prednisone. She

also

gave him Prednisone at the time of surgery so it doesn't cause any harm. Hope

that helps. Machell Nematollahi

[Guest guest]

Ibuprofen should not be given for 2 weeks prior to surgery. If he is only

running 102... use Tylenol alone and if he goes higher... go ahead and use

the Prednisone. It is fine before the surgery... just let the surgeon and

anesthesia know about any meds given.

I would stay away from any ibuprofen!

Good Luck with the surgery and keep him REALLY hydrated from now until he is

NPO before surgery.

God Bless,

Fran

Fran A Bulone

Mom to ph 5 yrs old

Waxhaw, NC

Owner & Moderator Group

[Guest guest]

,

I feel for you! My son, Drew, gets mouth sores. He has had several

bouts that have been particularly worse than others. On those bad

ones, he had facial swelling- looked like he had chipmunk cheeks,

and also his neck would swell. There have been several times in the

past where I actually woke him up because he started getting

cyanitic- his tonsils would swell so much that they would cut off

his breathing (only when sleeping)- So as you can imagine I did not

sleep during those. He had a tonsillectomy Sept 1 and I can say

that his breathing has been better since. At the end of Sept he had

an episode lasting longer than usual with really bad mouth sores

again. For the summer and fall, he's cycled with mouth sores every

2 weeks. For me, the sores are worse than the fevers. Anyway, I've

tried everything- recently a doctor in Boston wrote us a

perscription for Kenalog with Orabase. The generic version is

triamcinolone acetonide Dental paste .1%. It's a small tube of

paste that you dab on the ulcers with a q-tip. This is the only

thing that he'll actually allow me to put on and it does seem to

help a little. It does not numb the area like some of the other

things did. He did not like baby orajel, the 'magic mouthwash'-

which was lidocaine, maalox and benadryl I think, or straight

lidocaine on the sores.

For other tips- he basically lives on yogurt and milkshakes during

the times when the sores are bad. He's almost 3 and is starting to

be able to tell what he needs to do to help himself. For example,

two days ago he woke up with sores, and asked for a frozen go-gurt,

which he ate prior to something else to coat his mouth. He can't

suck very well when he has these sores- actually weaned himself of a

bottle at 9 months because he wasn't able to suck it. He also won't

use a sippy cup and prefers a regular cup because it's easy to drink.

I've done lots of research on mouth sores, can't find anything else

that we haven't tried!

Good luck,

mom to Drew, age 3

town RI

PS- he also had an episode right before he was scheduled to have his

tonsils out and the doc had us give him prednisone for it. It had

to be postponed anyway, because a few days later came down with hand

foot and mouth!

>

> Hi,

>

> Hayden is having an episode without a high fever, 102 , but the

> sores in his mouth are horrible. His mouth is all sores and just

a

> little mouth. I have never seen this in him before. His face is

> swollen and he can barely swallow. I am nervous, about his

airway.

> I need some remedies if anyone has any. I can feel the sores on

the

> inside of his cheeks from outside his mouth. Has anyone had sores

> this bad?? What do I do??

>

> I used the pred for the last 2 episodes, but he is scheduled for

his

> T & A on the 2nd of December. I was concerned about giving it to

him

> so close to his surgery. Did using the pred cause the symptoms to

> be so much worse. I've only used it twice. It was about 3 weeks

> between episodes.

>

> Fran, should I be concerned about giving Ibu and Tylenol so close

to

> surgery? Does it matter? So many questions.

>

>

[Guest guest]

Dear Jayson, I've been on predinsone for over 3 years now, and it most

definitely does affect your mouth and lips. I have problems with the

corners of my mouth, and now for whatever reason, I can't eat anything that

is in the least bit spicy. It makes me feel like my tongue is burning off.

I realize this isn't the same as ulcers, but I think the pain is very

similar. I've noticed mine gets better the lower the predinsone. How much

are you taking right now? I'm down to 10mg and it's not too bad. I still

cant' eat Mexican food without almost crying. The good news is it does go

away or at least mine has gotten better on the lower dose. Sorry I don't

have any real help to offer you. At least it isn't permanent damage to your

taste buds. Hang in there. Take care, Fran

----Original Message-----

From: Jayson Barsic [mailto:jbarsic@...]

Sent: Wednesday, April 06, 2005 1:08 PM

Subject: [ ] Mouth sores

Hi folks,

I'm wondering if anyone here gets a lot of canker sores. I seem to get

them all the time in the last 12 years since my P started. Don't know

if it's related at all. Additionally, I'm wondering if it could be a

side effect of the prednisone I'm taking. I've been taking the

prednisone now for a couple of weeks and I'm having the worst bout of

mouth sores I've ever had. 7 canker sores on the L side of my mouth.

Ouch!

Jayson

[Guest guest]

>

>

> Hi folks,

>

> I'm wondering if anyone here gets a lot of canker sores. I seem to get

> them all the time in the last 12 years since my P started. Don't know

> if it's related at all. Additionally, I'm wondering if it could be a

> side effect of the prednisone I'm taking. I've been taking the

> prednisone now for a couple of weeks and I'm having the worst bout of

> mouth sores I've ever had. 7 canker sores on the L side of my mouth.

> Ouch!

>

> Jayson

>

> Hi ,

I too have bad sores on the corners of my mouth.

The Doc said vit.c ? But that didn't help. Seems

like it could be a side of P. But truely hard to deal with.

If you find something that works YELL Please.

Carol

>

>

[Guest guest]

At 01:08 PM 4/6/2005, you wrote:

>I have suffered from cankersfor as long as I can remember back. The only

>time mine cleared was after steroid injections into my shoulder for what

>has turned out to be a torn rotator cuff. My psoriasis also cleared for a

>long time , nails included. I wish using it didn't have so many

>consuquences. I believe they are an autoimmune disease also. I have two

>right now, I feel your pain. Mo

>

>Hi folks,

>

>I'm wondering if anyone here gets a lot of canker sores. I seem to get

>them all the time in the last 12 years since my P started. Don't know

>if it's related at all. Additionally, I'm wondering if it could be a

>side effect of the prednisone I'm taking. I've been taking the

>prednisone now for a couple of weeks and I'm having the worst bout of

>mouth sores I've ever had. 7 canker sores on the L side of my mouth.

>Ouch!

>

>Jayson

>

>

>

>

[Guest guest]

It could very well be a drug reaction. When I was taking MTX I always had a few

someplace

in my mouth. Now that I am on Enbrel and off MTX I can say that it is one side

affect I am

glad I don't have anymore.

Tom

>

> Hi folks,

>

> I'm wondering if anyone here gets a lot of canker sores. I seem to get

> them all the time in the last 12 years since my P started. Don't know

> if it's related at all. Additionally, I'm wondering if it could be a

> side effect of the prednisone I'm taking. I've been taking the

> prednisone now for a couple of weeks and I'm having the worst bout of

> mouth sores I've ever had. 7 canker sores on the L side of my mouth.

> Ouch!

>

> Jayson

[Guest guest]

I'm not sure what is causing this for either of you, but try taking the

enzyme L-Lysine for a couple of days. You can find it anywhere

supplements are sold.

I'm not sure if it's the PA or what, but I have this issue too (and I'm

not taking any of the harsh drugs the rest of you are). I usually see

an improvement quickly, sometimes the same day.

My theory is that those of us with PA don't process necessary enzymes

and vitamins from our food well and that many of our odd, little

symptoms (not necessarily the bigger ones) might be due to our bodies

being nutritionally deprived (talk about insult to injury).

Dean

[Guest guest]

Jayson & Fran,

These type of mouth sores are also caused by Soriatane. Hmm. I wonder if

Soriatain has some cortasteroids in it?!??!?!?? Because it has caused the

thinning of the skin that the steorids cause and the mouth sores, etc.

HMMM. Makes you wonder==I shouldn't flare so bad if this is the case, unless the

steroids in it is a very low potency.....

LeAnn in OK

[Guest guest]

Heres the soloution for the mouth sores. Either of these two items:

Vaseline Lip Therapy Advanced formula (cheap to buy)

Eucerin Lip something or the other--not ALL stores have it. It is a vaseline

type formula as well but made by Eucerin and this stuff.... is....

AWESOME!!!!!!!!!!!!!!!!!!!! About $6 for a good sized tube that might last you

oh... three months or more, as opposed to the opponent up there, vasline lip

therapy that comes in a tiny .97c tube. LOL.

It is NOT part of the P. It is a side effect of some of the various medications

we are on. Never ask your reg doc==always ask the DERMO to look and confirm. It

is important to keep them moisturized with either of the two above. If you can't

afford " extra " stuff, go to the dollar store and get plain, UNSCENTED vaseline

and use that.

Trust me. This is the only solution, I know, because I tried everything from

blistex to carmex and everything in between.

LeAnn in OKC, age 39,

P since 1985, PA since 1999

[Guest guest]

Dear Jayson,

You need to take folic acid- at least 1 mg, several times a week and that

should handle it if your mouth sores are a side effect of methotrexate or your

other medications.

S.

group founder

[Guest guest]

I have unfortunatley been prone to canker sores most of my life. I noticed

after starting the methotrexate that I starting having break outs. The best

thing for cankers sores is to take L-Lysine. It can be found in the vitamin

isle at just about any store. I have been taking it daily and have had only

minor problems since and when I do get sores they clear up much more quickly

now. Canker sores are related to a herpes virus and the Lysine works as an

anti viral. My mom's doctor had recommended several years ago that she take it

for canker sores. Funny thing is I give it to one of cats who has a suppressed

immune system and is also prone to getting mouth sores so I just buy a big

bottle and we share it! It's not that expensive either.

ALBERTA MCKENZIE <carolmckenzie@...> wrote:

>

>

> Hi folks,

>

> I'm wondering if anyone here gets a lot of canker sores. I seem to get

> them all the time in the last 12 years since my P started. Don't know

> if it's related at all. Additionally, I'm wondering if it could be a

> side effect of the prednisone I'm taking. I've been taking the

> prednisone now for a couple of weeks and I'm having the worst bout of

> mouth sores I've ever had. 7 canker sores on the L side of my mouth.

> Ouch!

>

> Jayson

[Guest guest]

Thanks Fran,

I'm actually going to the doctor today. The sore that is behind my

upper molar is just NOT going away. To top it off my jaw joint on that

side and the underside of my jaw on that side just ache constantly.

I'm pretty miserable. Can't exactly figure this out. I'm hoping I

don't have some type of infection. Anyone experience this jaw pain

thing before? I've had it mildly before, but this is pretty bad.

Jayson

On Thursday, April 7, 2005, at 05:25 AM, Fran Mishler wrote:

>

> Dear Jayson, I've been on predinsone for over 3 years now, and it most

> definitely does affect your mouth and lips.  I have problems with the

> corners of my mouth, and now for whatever reason, I can't eat anything

> that

> is in the least bit spicy.  It makes me feel like my tongue is burning

> off.

> I realize this isn't the same as ulcers, but I think the pain is very

> similar.  I've noticed mine gets better the lower the predinsone.  How

> much

> are you taking right now?  I'm down to 10mg and it's not too bad.  I

> still

> cant' eat Mexican food without almost crying.  The good news is it

> does go

> away or at least mine has gotten better on the lower dose.  Sorry I

> don't

> have any real help to offer you.  At least it isn't permanent damage

> to your

> taste buds.  Hang in there.  Take care, Fran

>

>

[Guest guest]

Later today I'll let y'all know what my doc says about why this canker

sore is so huge....drug reaction or ?

Jayson

[Guest guest]

Hi LeAnn,

Thanks for the advice. Maybe I didn't make it clear. I'm talking

about canker sores...the kind that are actually inside the mouth...on

the gums or the inner lining of the mouth. I've found that salt water

swishes and topical lidocaine at least help with the sxs. The question

is how to actually get rid of them!!

Jayson

On Friday, April 8, 2005, at 08:54 AM, DeafEskie wrote:

>

> Heres the soloution for the mouth sores. Either of these two items:

>

> Vaseline Lip Therapy Advanced formula  (cheap to buy)

>

> Eucerin Lip something or the other--not ALL stores have it. It is a

> vaseline type formula as well but made by Eucerin and this stuff....

> is.... AWESOME!!!!!!!!!!!!!!!!!!!! About $6 for a good sized tube that

> might last you oh... three months or more, as opposed to the opponent

> up there, vasline lip therapy that comes in a tiny .97c tube. LOL.

>

> It is NOT part of the P. It is a side effect of some of the various

> medications we are on. Never ask your reg doc==always ask the DERMO to

> look and confirm. It is important to keep them moisturized with either

> of the two above. If you can't afford " extra " stuff, go to the dollar

> store and get plain, UNSCENTED vaseline and use that.

>

> Trust me. This is the only solution, I know, because I tried

> everything from blistex to carmex and everything in between.

>

> LeAnn in OKC, age 39,

> P since 1985, PA since 1999

>

>

[Guest guest]

Thanks ...I'll mention this to the doc

Jayson

On Friday, April 8, 2005, at 11:07 PM, CTNATIVE@... wrote:

>

> Dear Jayson,

>

> You need to take folic acid- at least 1 mg, several times a week and

> that 

> should handle it if your mouth sores are a side effect of methotrexate

> or your 

> other medications.

>

> S.

> group founder

[Guest guest]

I forgot about L-Lysine!!!!! I had an ENT who had me on that years

ago. Thanks for jogging my memory.

On Saturday, April 9, 2005, at 12:26 AM, Deborah Burcham wrote:

>

> I have unfortunatley been prone to canker sores most of my life.  I

> noticed after starting the methotrexate that I starting having break

> outs.  The best thing for cankers sores is to take L-Lysine.  It can

> be found in the vitamin isle at just about any store.  I have been

> taking it daily and have had only minor problems since and when I do

> get sores they clear up much more quickly now.  Canker  sores are

> related to a herpes virus and the Lysine works as an anti viral.  My

> mom's doctor had recommended several years ago that she take it for

> canker sores. Funny thing is I give it to one of cats who has a

> suppressed immune system and is also prone to getting mouth sores so I

> just buy a big bottle and we share it!  It's not that expensive

> either.  

>

> ALBERTA MCKENZIE <carolmckenzie@...> wrote:

[Guest guest]

If you are are taking metho or arava and you have not been getting cold

sores previously, chances are that the mouth sores are a result of the

metho/arava having an effect on your GI tract. These drugs very much slow down

the

reproduction of new cells and their sloughing off properly.

according to my doc.

Folic acid added in to your daily diet either by more food stuffs or a 1 mg

pill does the trick for me. There is a load of discussion on this topic in

our sites archive if anyone is interested.

group founder