Re: new to boards and desperate!

[Guest guest]

sounds like sjorgens syndrome.  the prednisone has probably masked the symptoms

while you were taking it and now that you are coming off the sjorgens is showing

its ugly head.  rita

[ ] new to boards and desperate!

Hi,

I have had RA since early Oct 2007. I am on Enbrel now. Trying to ween

off of Prednisone. I have been on it for almost 9 months. I have

recently been having bouts of dry mouth, extremely exhausted and now my

lips have swelled up, cracked and bleeding. I see my RA doctor

wednesday.

Has anyone experienced these symptoms while coming off Prednisone?

[Guest guest]

I'm on my second try to get off Pred also, and the Sjogrens hasn't changed

for me at all. It still gets so dry in my mouth that the gum I sleep with

will stick to some part of my mouth and I have to scrape it loose.I use

Trident with Xylotol and usually it helps me through the night. When I wake

up I get some water from my bedside bottle and chew the gum until my mouth

works again. It sounds like you do have Sjogrens as Rita says. Since you are

not salivating, look out for tooth cavities, the saliva helps the PH balance

of your mouth.

Dennis

On Mon, Jun 23, 2008 at 2:50 PM, Rita Wages <rita.wages@...> wrote:

> sounds like sjorgens syndrome. the prednisone has probably masked the

> symptoms while you were taking it and now that you are coming off the

> sjorgens is showing its ugly head. rita

>

>

> [ ] new to boards and desperate!

>

> Hi,

> I have had RA since early Oct 2007. I am on Enbrel now. Trying to ween

> off of Prednisone. I have been on it for almost 9 months. I have

> recently been having bouts of dry mouth, extremely exhausted and now my

> lips have swelled up, cracked and bleeding. I see my RA doctor

> wednesday.

>

> Has anyone experienced these symptoms while coming off Prednisone?

>

>

[Guest guest]

I was diagnosed with sjogrens in 2001. My symtoms get worse when i

have to increase certain medications for my degenerative discs,

fibromyalgia,and now I have been diagnosed with RA. but i haven't

started any meds for RA yet. I sugest maybe you check the other meds

you take to see if they add to your Sjogrens symtoms. hope it helps.

>

> > sounds like sjorgens syndrome. the prednisone has probably

masked the

> > symptoms while you were taking it and now that you are coming off

the

> > sjorgens is showing its ugly head. rita

> >

> >

> > [ ] new to boards and desperate!

> >

> > Hi,

> > I have had RA since early Oct 2007. I am on Enbrel now. Trying to

ween

> > off of Prednisone. I have been on it for almost 9 months. I have

> > recently been having bouts of dry mouth, extremely exhausted and

now my

> > lips have swelled up, cracked and bleeding. I see my RA doctor

> > wednesday.

> >

> > Has anyone experienced these symptoms while coming off Prednisone?

> >

> >

[Guest guest]

>

> > sounds like sjorgens syndrome. the prednisone has probably

masked the

> > symptoms while you were taking it and now that you are coming off

the

> > sjorgens is showing its ugly head. rita

> >

> >

> > [ ] new to boards and desperate!

> >

> > Hi,

> > I have had RA since early Oct 2007. I am on Enbrel now. Trying to

ween

> > off of Prednisone. I have been on it for almost 9 months. I have

> > recently been having bouts of dry mouth, extremely exhausted and

now my

> > lips have swelled up, cracked and bleeding. I see my RA doctor

> > wednesday.

> >

> > Has anyone experienced these symptoms while coming off Prednisone?

> >

> >

[Guest guest]

My dentist gave me samples of biotene. It comes in a liquid, a

toothpaste, and a gel. You can phone 1-800-922-5856 or check the

website at www.biotene.com gentle hugs! Marcia in NY

> >

> > > sounds like sjorgens syndrome. the prednisone has probably

> masked the

> > > symptoms while you were taking it and now that you are coming off

> the

> > > sjorgens is showing its ugly head. rita

> > >

> > >

> > > [ ] new to boards and desperate!

> > >

> > > Hi,

> > > I have had RA since early Oct 2007. I am on Enbrel now. Trying to

> ween

> > > off of Prednisone. I have been on it for almost 9 months. I have

> > > recently been having bouts of dry mouth, extremely exhausted and

> now my

> > > lips have swelled up, cracked and bleeding. I see my RA doctor

> > > wednesday.

> > >

> > > Has anyone experienced these symptoms while coming off Prednisone?

> > >

> > >

[Guest guest]

Dennis,

Sorry it took so long to reply to your post. When I had throat cancer last

year, one of the side effects of radiation treatment is the loss of your

salivary glands, which of course causes dry mouth. I tried all the usual things

and then my barber told me about " Spray Stoppers-4 Dry Mouth " . It's distributed

by Woodridge Labs, Inc. in Van Nuys, California. The only place I found it in

San Diego was Longs Drug Store by the tooth paste. The reason I am so specific

is because the folks at the store didn't even know they had it. At least not

the ones I asked. It worked for me at any rate.

Jere

[Guest guest]

Hi Guzzy,I also have Sjogrens syndrome,as well as RA & lupus.Good advice about

teeth cleaning every 3 mths.Also,brush 3 times a day and floss every time.I

never had cavities in my life,I'm 56,but at my last exam had 6 that needed

filling.I also get cracks at the corners of my mouth,and inflamed salavary

glands,hurts like####.I sip water all day,swishing before swallowing.I wish I

could use the sugar free products,but they make me sick on my stomache.

Something else you might watch out for,thrush,I got it last year and it took

forever to get rid of.I am so sorry you have this awful syndrome,It has been a

real pain in the you know what for me.Hope you feel better soon,Sherry

[Guest guest]

Hi Sherry,

Thank you for your support and advice. I called my dentist who is terrific and

he said to use a mouth rinse called Biotene. Have you heard of it.? My husband

bought me some at costco and I have used it about 4 times. I am just getting

over a nasty bout with fever blisters all over my lips. (herpes simplex).

I don't know if this was caused by the Sjogrens Syndrome or not.

I am now brushing my teeth 3 times a day. I was only flossing once. I will now

increase to 3. It is very hard on the lips when they are sore.

Thanks so much for caring. I hope everything goes well with you.

Does this ever go into remission?

[ ] Re: new to boards and desperate!

Hi Guzzy,I also have Sjogrens syndrome,as well as RA & lupus.Good advice about

teeth cleaning every 3 mths.Also,brush 3 times a day and floss every time.I

never had cavities in my life,I'm 56,but at my last exam had 6 that needed

filling.I also get cracks at the corners of my mouth,and inflamed salavary

glands,hurts like####.I sip water all day,swishing before swallowing.I wish I

could use the sugar free products,but they make me sick on my stomache.

Something else you might watch out for,thrush,I got it last year and it took

forever to get rid of.I am so sorry you have this awful syndrome,It has been a

real pain in the you know what for me.Hope you feel better soon,Sherry

[Guest guest]

Hi Dennis,

Thanks for the info. I will look for this product. I called my dentist to set up

and appointmen for a cleaning. He told me about a product called Biotene Mouth

Rinse. My husband bought me some and I have used it 4 times. Very soothing.

I hope all is well with you.

Guzzie53

Re: [ ] new to boards and desperate!

Dennis,

Sorry it took so long to reply to your post. When I had throat cancer last year,

one of the side effects of radiation treatment is the loss of your salivary

glands, which of course causes dry mouth. I tried all the usual things and then

my barber told me about " Spray Stoppers-4 Dry Mouth " . It's distributed by

Woodridge Labs, Inc. in Van Nuys, California. The only place I found it in San

Diego was Longs Drug Store by the tooth paste. The reason I am so specific is

because the folks at the store didn't even know they had it. At least not the

ones I asked. It worked for me at any rate.

Jere

[Guest guest]

Marcia,

Gentle big hugs back. Thank you for the inof on biotene. My dentist just told me

about the mouth rinse.

Take care,

Sue

[ ] new to boards and desperate!

> > >

> > > Hi,

> > > I have had RA since early Oct 2007. I am on Enbrel now. Trying to

> ween

> > > off of Prednisone. I have been on it for almost 9 months. I have

> > > recently been having bouts of dry mouth, extremely exhausted and

> now my

> > > lips have swelled up, cracked and bleeding. I see my RA doctor

> > > wednesday.

> > >

> > > Has anyone experienced these symptoms while coming off Prednisone?

> > >

> > >

[Guest guest]

Hi ,

Thanks for the thought. I will look into that. I did see my

Rheumatologist and he knows all my meds. He did not say anything. I

will also check with my PC Doctor.

Thanks again.

Sue

> >

> > > sounds like sjorgens syndrome. the prednisone has probably

> masked the

> > > symptoms while you were taking it and now that you are coming

off

> the

> > > sjorgens is showing its ugly head. rita

> > >

> > >

> > > [ ] new to boards and desperate!

> > >

> > > Hi,

> > > I have had RA since early Oct 2007. I am on Enbrel now. Trying

to

> ween

> > > off of Prednisone. I have been on it for almost 9 months. I have

> > > recently been having bouts of dry mouth, extremely exhausted

and

> now my

> > > lips have swelled up, cracked and bleeding. I see my RA doctor

> > > wednesday.

> > >

> > > Has anyone experienced these symptoms while coming off

Prednisone?

> > >

> > >

[Guest guest]

Hi Guzzy,sorry to say no,mine has never remitted.I am sorry about the fever

blisters,I've never had one of those,(knock on wood).Yes I have used the biotene

products but they didn't seem to help much.Most toothpastes burn my mouth,but

belive it or not,Pepsodent, remember " you'll wonder where the yellow went when

you brush your teeth with Pepsodent " ?yep,that one,works great for me,and two

parts water,one part peroxide make a great mouthwash,just be sure to rinse

well.Do you have any problems with spicy or salty foods?I have to be really

careful.OH, and chapstick,works best for me to keep moisture in my lips.I hope

some of the things that work for me will help you out!If you would like to

talk,email me.Hope you feel better soon,Sherry

[Guest guest]

Hi Sherry,

Waking up in the morning with your mouth totally dry is the worst. I try to take

a drink of water during the night when I wake up. This morning when I woke up my

stomach was burning.  I have G. E. R. D. and I take medication twice a day for

that. I have now read it can affect your stomach.

I am using Sensodyne toothpase for sensitive teeth. After I brush, my mouth is

really dry. I will try the biotene for awhile, then if it does not work, I will

try the peroxide. I have rinsed with it before for mouth sores and it is yucky!

It is so nice to have someone who understands to discuss this with.

thanks so much for listening.

Sue

[ ] Re: new to boards and desperate!

Hi Guzzy,sorry to say no,mine has never remitted.I am sorry about the fever

blisters,I've never had one of those,(knock on wood).Yes I have used the biotene

products but they didn't seem to help much.Most toothpastes burn my mouth,but

belive it or not,Pepsodent, remember " you' ll wonder where the yellow went when

you brush your teeth with Pepsodent " ?yep, that one,works great for me,and two

parts water,one part peroxide make a great mouthwash,just be sure to rinse

well.Do you have any problems with spicy or salty foods?I have to be really

careful.OH, and chapstick,works best for me to keep moisture in my lips.I hope

some of the things that work for me will help you out!If you would like to

talk,email me.Hope you feel better soon,Sherry

[Guest guest]

Sherry,

You had posted before that you get cracks in the corners of your mouth.

I have them now. Is there anything you do for them?

I hope you are doing well. You sound to be worse off than I am.

Thanks,

Guzzie53/Sue

[ ] Re: new to boards and desperate!

Hi Guzzy,I also have Sjogrens syndrome,as well as RA & lupus.Good advice about

teeth cleaning every 3 mths.Also,brush 3 times a day and floss every time.I

never had cavities in my life,I'm 56,but at my last exam had 6 that needed

filling.I also get cracks at the corners of my mouth,and inflamed salavary

glands,hurts like####.I sip water all day,swishing before swallowing.I wish I

could use the sugar free products,but they make me sick on my stomache.

Something else you might watch out for,thrush,I got it last year and it took

forever to get rid of.I am so sorry you have this awful syndrome,It has been a

real pain in the you know what for me.Hope you feel better soon,Sherry

[Guest guest]

FYI- cracks in the corners of our mouth is from a low Vitamin B2,

riboflavin level. I take a multi Vitamin B tablet so don't get them

anymore.

Debbie L

>

> Sherry,

> You had posted before that you get cracks in the corners of your

mouth.

> I have them now. Is there anything you do for them?

> I hope you are doing well. You sound to be worse off than I am.

> Thanks,

> Guzzie53/Sue

>

>

>

>

>

>

>

>

[Guest guest]

Hi Guss,I use blistex,constantly,Just trying to keep my lips coated so that food

& drink won't burn the corners of my mouth.Sometimes just opening my mouth wide

will cause the cracks to open,so just apply,apply,apply. I don't know how yours

will be,but mine didn't come on all at once.I blamed my meds for a long time for

the dryness.My MD insisted on a lip biopsy,and it was of course positive.I am so

sorry you are having to go thru this,I wouldn't wish this on my worst enemy!Just

stay on top of it.I hope you feel better soon,hugs,Sherry

[Guest guest]

Debbie L

Thank you for the info. I have not been taking any vitamins. I used to take a

super B complex. I will start again.

Thanks again,

Guzzie53/Sue

[ ] Re: new to boards and desperate!

FYI- cracks in the corners of our mouth is from a low Vitamin B2,

riboflavin level. I take a multi Vitamin B tablet so don't get them

anymore.

Debbie L

>

> Sherry,

> You had posted before that you get cracks in the corners of your

mouth.

> I have them now. Is there anything you do for them?

> I hope you are doing well. You sound to be worse off than I am.

> Thanks,

> Guzzie53/Sue

>

>

>

>

>

>

>

>

[Guest guest]

Hi Sherry,

I am using chap stick constantly. I always have. I am sort of addicted to it.

I now hate to open my mouth. It is so painful. A vitamin B2 deficientcy was

noted, I will go back on my B vitamins.

Thanks and Gentle Hugs to you,

Sue

[ ] Re: new to boards and desperate!

Hi Guss,I use blistex,constantly, Just trying to keep my lips coated so that

food & drink won't burn the corners of my mouth.Sometimes just opening my mouth

wide will cause the cracks to open,so just apply,apply, apply. I don't know how

yours will be,but mine didn't come on all at once.I blamed my meds for a long

time for the dryness.My MD insisted on a lip biopsy,and it was of course

positive.I am so sorry you are having to go thru this,I wouldn't wish this on my

worst enemy!Just stay on top of it.I hope you feel better soon,hugs,Sherry

[Guest guest]

Me too! I have never heard of vit.B deficiency.I will start it tomorrow! thanks

Debbie!Hugs back Guz,Sherry