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KMS13
Regular Member


Date Joined Dec 2005
Total Posts : 65
   Posted 10/2/2008 6:38 AM (GMT -7)   
Hi everyone,
 
It's been awhile, hope everyone is healthy and happy! I recently went to a Lupus symposium and a Doctor briefly brought up "sores" in the mouth and or vagina of women. Has anytone run into this and what is the treatment if any?

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 10/2/2008 8:58 AM (GMT -7)   
Sores or ulcers are very common in lupus.  It's one of the things doctors will check in the early diagnosis stages. Treatment for them is basically anything to calm the lupus down.  They appear when the disease is in a flare.  So if you're on prednisone, imuran, plaquenil, cellcept, etc, etc, any of them will take care of the sores once the dose is high enough to stop the flare up.
 
Some people find that using a mouthwash will help with the pain.
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, Tramacet, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


KMS13
Regular Member


Date Joined Dec 2005
Total Posts : 65
   Posted 10/2/2008 9:02 AM (GMT -7)   
Great thanks!

redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 10/2/2008 2:58 PM (GMT -7)   
I think Sjogrens can cause mouth and nose ulcers so moisture helps a lot- I say this because when my mouth or sinuses dry out I get ulcers and they don't heal very well unless I find a way to keep the area in question moist.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements


peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2446
   Posted 10/3/2008 6:40 AM (GMT -7)   
I was dx with Lupus April 07 and was sick for years prior, I never had the mouth sores until 8 months ago. They were awful, to the point I could not even eat properly.

They come and go, but what I do to make them go away is gargle with salt water and add 3 drops of oil or oregano. It works wonders for me.
The world breaks every one and afterward many are strong in the broken places


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 10/3/2008 4:42 PM (GMT -7)   

Strange enough I guess for me, is that the plaquenil has helped tremendously with the mouth sores.  I used to have them all the time.  constant.  Hardly ever did I have a full day without sores in several places in my mouth.  Very painful.  I still have them, but not as often, nor do they last as long once they appear, and I go many days without one now.  i am assuming it is the plaquenil that has caused this, since plaquenil is the only lupus med I am taking.

Hester


Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin, multivitamin, Arthrotec , Meclazine ,  plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid,  Amlodipine, Crestor, Lasinopril, Plavix, phenagrin,  Restasis  


smokeyswife
Regular Member


Date Joined Oct 2006
Total Posts : 281
   Posted 10/4/2008 1:58 PM (GMT -7)   
Right now I have one on each corner of my mouth and one in my nose. The ones on my mouth hurt and I can't open my mouth very wide. The one in my nose has been there for about 2 months now, it just won't go away. I have even resorted to putting vaseline or polysporin on the sore inside my nose, it helps but it is still there.
 
Connie
 
 
 
 
diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.Thyroid Disease ,RA
Taking Methotrexate, Plaquenell, Folic Acid, Synthroid,Prednisone, Pantoloc, Singulair, Tramadol, OxyCodeine and extra Strength tylenol when needed,and Zytram.


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/6/2008 8:59 AM (GMT -7)   
Hi ladies,

I've heard from other members here that taking Folic Acid (Vitamin B9) can help get rid of mouth sores too.

Sorry you all have had such a hard time with this. I agree Hester, I think the plaquenil does help.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/6/2008 9:03 AM (GMT -7)   
Peacesoul,

I never heard of "oil of oregano". Do you get that at a health food store? Do you use it for other things too?

I am using essential oils for some other things and I'm happy with results so far.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 10/7/2008 4:41 AM (GMT -7)   
Sorry you all have had such a hard time with this. I agree Hester, I think the plaquenil does help.

Blessings!
 
I had to be in the Sun yesterday, paying bills, and stuff, and as sore started in my mouth, and I thoiuht to myself, "Okay this is it" plaquenil is not going to keep working" but this morning it is gone.  Plaquenil is good as gold to me.
 
And I figured out why one walmart store is so hard on me, and the other one, the one I went to yesterday, is not that bad.  Skylights.  The newer walmart uses sky lights to help the flourescent lights to light the building.  not as many flourescent lights to make me sick.
 
But by last night I had the nausea, the weakness, the achy feeling, and the mouth sore.  This morning it is all gone.  This is remission to me.  I can handle the little flares due to being in the sun and stuff.  I can plan for it, and give myself the time to heal from the little flares.
 
Sure glad I did not stop taking the plaquenil because of fear of it hurting my eyes.
 
I feel really good yall.  and when I feel really good, sometimes I write too much yeah
 
There are still things I simply cannot do, and I don't try.  but for the most part, compared to when I first found this forum, I am in good shape.
 
Hester
Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin, multivitamin, Arthrotec , Meclazine ,  plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid,  Amlodipine, Crestor, Lasinopril, Plavix, phenagrin,  Restasis  


KMS13
Regular Member


Date Joined Dec 2005
Total Posts : 65
   Posted 10/7/2008 5:42 AM (GMT -7)   
Hi Hester & Thanks for the info! New question though, the sun affects you that quickly and easily? Was it always that bad or does it get worse as time goes on?

-KMS

Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 10/7/2008 6:53 AM (GMT -7)   
KMS13 said...
Hi Hester & Thanks for the info! New question though, the sun affects you that quickly and easily? Was it always that bad or does it get worse as time goes on?

-KMS
Yes it does unfortunately.  And I am not real sure if it has gotten worse as time goes by.  This is a good question.  I am very sensitive to the sun, but didn't always know this.  Until 1996 I did not know I had lupus, if lupus is what I have, and it was then that I started to pay attention to sun sensitivity.  The only thing I am certain of is that I would be sick for two or three days like I had the flu, if I cut my grass.  And then I noticed getting sick after having shopped at walmart.
 
Is it worse now than it used to be?  Does it happen faster now than it used to?  I just don't know.  After being on plaquenil and prednisone in 96, I guess I went into remission.  I didn't have a flare until six months ago.  I was still sunsensitive, but I knew the sickness would only last a few days and it would be gone.  No major flare until six months ago, and it had nothing to do with the sun.  and it was different, worse than it had been before.  Is that due to time going by?  i do not know.
 
someone on the forum said the other day that winter time is hardest for her.  But for me it is summer time, and that Sun.  It is like the Sun is in a different place or something in the summer, and that affects me worse than the winter sun.  for some reason.  I know not why.
 
From this forum I am learning to question why, and pay more attention to Lupus than I ever have before.  Talking to my family about Lupus was like talking to a brick wall.  and I had no other support system.
 
Thank you for your response
Hester
Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin, multivitamin, Arthrotec , Meclazine ,  plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid,  Amlodipine, Crestor, Lasinopril, Plavix, phenagrin,  Restasis  


KMS13
Regular Member


Date Joined Dec 2005
Total Posts : 65
   Posted 10/7/2008 6:57 AM (GMT -7)   
Thanks Hester! I was diagnosed 2.5 years ago and was a sun bather for years! I find the sun just makes me tired now, which I am happy to live with as long as I can be outside and in it. I too think the winter is hardest due to my aching joints and the Reyanuds! I ski in the winter and can certainly not handle it the way I used to endurance wise and I cover my whole face from the sun but like I said I will take it as long as I can still do the things that I love. Hang in there! Good luck and God bless!

-KMS

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 10/7/2008 8:17 AM (GMT -7)   
Hi KMS:

I used to be an avid sun bather, I started getting sick back in 1987. In the beginning I'd be just very fatigued. I figured it was from being out in the sun. So I stopped sun bathing outside and went to tanning booths. My doctor mentioned in Oct 1987 that I might have Lupus. It took 13 years to get the final DX of it.

Now when I spend more than 10 mins in the sun, I can feel it affecting me. I not only have fatigue, but I get a rash all over my joints and my face gets the butterfly rash really bad. I try to avoid the sun the best I can.

I also suffer from the oral ulcers you mentioned earlier in the thread. I get several sore in my mouth at one time. I normally can't connect them with a flare or not. I know that I've been flaring for a really long time, it seems totally never ending. I use Mary's Magic Mouthwash to help with the sores in my mouth.

I hope I was able to offer some help.

Take care,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


KMS13
Regular Member


Date Joined Dec 2005
Total Posts : 65
   Posted 10/7/2008 8:19 AM (GMT -7)   
Thanks Barbara! I as well have the butterfly rash and it gets worse in the sun!

-KMS

Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 10/7/2008 12:21 PM (GMT -7)   

I have never had the butterfly rash, but my face gets red.  and I have patchy areas that break out on my shoulders and knees, or just above the knees.  and under the skin these mottled potted dark lines on my shoulders.  But if I am not out in it everyday this doesn't happen.  I was taking my friend to the methadone clinic every day when this happened.  and I had to be in the sun a lot in the middle of the day.  I don't regret it however.  I learned something about myself, and I helped my friend who died recently.

I was thinking earlier that both my daughters sun bathe.  I never have.  but i was thinking that maybe this was a good indication that they would not have lupus.  But you Barbara Lee, was an avid sunbather, and you have been diagnosed with Lupus. 

I can still pray however that it will not ever affect them.  More worried about my son actually.  He has lots of problems with his joints.  but he will not go and get the test.

Hope the day is good to all of you

Hester


Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin, multivitamin, Arthrotec , Meclazine ,  plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid,  Amlodipine, Crestor, Lasinopril, Plavix, phenagrin,  Restasis  

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