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LupusPoopus
New Member


Date Joined Aug 2009
Total Posts : 12
   Posted 8/8/2009 10:38 AM (GMT -7)   
I did a search on this prior to posting because I didn't want to ask a question that's been answered a million times already but I simply didn't find the answer *I* was looking for.
 
Blisters... aka mouth sores
 
#1. Are they contagious?
Although I'm grossed out enough as it is and don't go around kissing my nieces when I'm covered in them, I feel like my sister is watching my every move to make sure my hands/face/mouth doesn't contaminate anything her kids might be in contact with. Her logic is if it wasn't contagious, I wouldn't have so many of them at once. (I currently have 8 small ones on my lips, 2 on my gums and one in my nose)
 
#2. HOWEVER I also have one on my breast, one on my arm, and yesterday I found one on my temple and I think I have four more on my legs (they haven't blistered yet so they could be mosquito bites - but I doubt it) So is it spreading? or just Lupus doing it's thing?
 
These are not cold sores but blisters like when you burn yourself and your body creates that fluid bubble. Yes they hurt and not just the blister itself but all around it. For example, I have a cluster of 5 in the corner of my mouth but the pain reaches down to my jaw line up towards my neck (I also have swollen glands at the moment too so it doesn't help) and in my gum and upper lip.

When my doctor saw me on Thursday, she recommended I put Oragel on them to ease the pain but she didn't mention anything about it spreading.


 

Katie aka Lupus Poopus 

Dx: Lupus, Hypothyroidism, Anxiety disorder, Bipolar,

Possibly misdiagnosis: Fibromialgia

Suspected: Sleep Apnea, Carpal Tunnel

No current medication

 

Quoted from about.com:
The majority of lupus patients lead normal lives. The worst adversary comes from within, when the patient loses hope, loses will, and gives in to frustration and depression.

 

We must all stay positive!

Post Edited (LupusPoopus) : 8/8/2009 10:41:54 AM (GMT-6)


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 5790
   Posted 8/8/2009 11:11 AM (GMT -7)   
It sounds like the kind of blisters that are either 'fever blisters' (caused by a herpes simplex) or 'shingles' (related to smallpox). Both conditions have small blisters with internal fluids and they tingle or sting or are painful (everyone experiences this a little differently). Both conditions become active when under stress.

The 'fever blisters' are most often around the mouth & nose and are often associated with a fever. Fevers occur more often in lupus patients than in the general population. These blisters ARE contagious and careful hand washing is indicated - no kissing, etc. when they are fluid filled. They are not longer contagious once they are dry and healing.

I don't know if shingles are contagious or not -- I think not.

There are a couple of medications often used - Zovirax and Valtrex - to treat (suppress, really) both illnesses. I have fever blisters (Herpes Simplex, a relative of genital herpes) and have taken Valtrex ever since I was dx with lupus 8 years ago. Skip 4-5 days and sure enough, I have a breakout. Not everyone is as sensitive, some people only have one breakout ever.

Hope that helps.
Lynnwood, Lupus & Sjogren's Moderator
Life is far too important to be taken seriously. - Oscar Wilde, 1882


LupusPoopus
New Member


Date Joined Aug 2009
Total Posts : 12
   Posted 8/8/2009 11:22 AM (GMT -7)   
So what you're saying is being passionate and romantic with hubby last night wasn't a good idea after all? Bummer....

I am always so careful around the children whether I think I'm contagious or not. It just bugs me to feel like I'm under the microscope with continuous scanning eyes... ya know?

To my knowledge, I haven't had a fever in the past few days or weeks.
If I understand you correctly, the fever blisters are not caused by Lupus but something completely different?
And can these fever blisters be found all over the body as well? or just near the mouth?

 

Katie aka Lupus Poopus 

Dx: Lupus, Hypothyroidism, Anxiety disorder, Bipolar,

Possibly misdiagnosis: Fibromialgia

Suspected: Sleep Apnea, Carpal Tunnel

No current medication

 

Quoted from about.com:
The majority of lupus patients lead normal lives. The worst adversary comes from within, when the patient loses hope, loses will, and gives in to frustration and depression.

 

We must all stay positive!


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 5790
   Posted 8/8/2009 11:30 AM (GMT -7)   
Fever blisters are usually only near the mouth, although I have had them in the eyes as well. They would have to do scrapings or biopsy on the blisters on legs, etc tp determine exactly which they are.

Oral sex would be precluded with active oral herpes.

They can be activated by low grade fevers (usually not noticeable) as well as (for me at least) simply getting overheated. Such as in the sun too long, too sweaty, etc.

They are not a part of lupus, but are part of the very many opportunistic diseases that generally attack when we are not at our best. Lupus breaks us down, then everything else jumps on board - just like an elderly person who is more suceptable to everything that comes along.
Lynnwood, Lupus & Sjogren's Moderator
Life is far too important to be taken seriously. - Oscar Wilde, 1882


LupusPoopus
New Member


Date Joined Aug 2009
Total Posts : 12
   Posted 8/8/2009 11:34 AM (GMT -7)   
You're really putting a damper on my day here Lynnwood (laughing my pretty little behind off - hmmm it blocked the original letters)

I know... I know... I asked the question!


 

Katie aka Lupus Poopus 

Dx: Lupus, Hypothyroidism, Anxiety disorder, Bipolar,

Possibly misdiagnosis: Fibromialgia

Suspected: Sleep Apnea, Carpal Tunnel

No current medication

 

Quoted from about.com:
The majority of lupus patients lead normal lives. The worst adversary comes from within, when the patient loses hope, loses will, and gives in to frustration and depression.

 

We must all stay positive!


alienwife
Regular Member


Date Joined Feb 2009
Total Posts : 108
   Posted 8/8/2009 12:19 PM (GMT -7)   
I get blisters on my arms, legs, feet when my skin is flaring - they get worse if i go out in the sun. Elbows, wrists, ankles (pretty much anything bony that receives sun exposure) and my nose are where they are the worst - and they itch like crazy. I use a steroid lotion to keep them under control when they are really bad, but since i started on plaquenil, the existing blisters i had went away and the new ones are few & far between.

Welcome to the forum, Katie . . . everyone here is really wonderful! I hope you find the support and answers you need.
Anne

There are only two ways to live your life.
One is as though nothing is a miracle.
The other is as though everything is a miracle.
-Albert Einstein

Dx: SLE, Sjogren's, Reynaud's, Peripheral Neuropathy


firebabe
Regular Member


Date Joined Aug 2007
Total Posts : 206
   Posted 8/8/2009 12:57 PM (GMT -7)   

If your doctor didn't show much concern about your blisters as far as them being contagious, I wouldn't worry too much about that.  I often get small ones too on my face, but they seem to go away in a few days.  I try not to touch them or touch anyone if I've touched them. 

If they were to get worse, or you possibly did develop Shingles-they cannot be contracted from person to person, unless by direct touch.  If someone did get them from you it would depend on whether or not they had the chicken pox or not.  Someone who directly touched your shingles that had already had the chicken pox, would possibly contract shingles.  Someone who directly touched your shingles that had never had chicken pox, would develop the chicken pox from your shingles. 

I'm glad you asked about all of this, because I've never had a nose sore before when I've been to my doctor.  They have white-coat syndrome and always seem to disappear right before I have to go.  I wasn't sure what to put on them for relief-and they certainly are painful in my nose. :(

Thanks!  I hope you are feeling better soon.

 


~Tammy~
 "Challenges make you discover things about yourself you never really knew."
 SLE and Class II Lupus Nephritis


LupusPoopus
New Member


Date Joined Aug 2009
Total Posts : 12
   Posted 8/8/2009 2:15 PM (GMT -7)   
You might be on to something Anne. We had nothing but rain for the past 6 weeks and then all of sudden we have a decent summer for a week and I start getting blisters. Of course, I've been spending what time I can spare outside after dinner when it is nice but I know Sun is Sun.

 

Katie aka Lupus Poopus 

Dx: Lupus, Hypothyroidism, Anxiety disorder, Bipolar,

Possibly misdiagnosis: Fibromialgia

Suspected: Sleep Apnea, Carpal Tunnel

No current medication

 

Quoted from about.com:
The majority of lupus patients lead normal lives. The worst adversary comes from within, when the patient loses hope, loses will, and gives in to frustration and depression.

 

We must all stay positive!


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1942
   Posted 8/8/2009 10:33 PM (GMT -7)   
Katie--
there is an autoimmune condition called pemphigus that causes blisters, but they tend to be large. My mother is going through something like that and they are ending up biopsying and culturing them. She thought it was shingles but it did not respond properly and behave properly, then they thought the usual yeast/infection kind of thing. Now they are looking at some autoimmune conditions like Behcets and Reiters, but there are so many of these kinds of things. So far, steroids helped. It can be from the sun as mentioned above, or even something that started as one thing, like herpes or staph (oh, make sure you get to the health dept or somewhere to make sure its not a staph infection, that is key and some docs aren't so good at catching that, but family practice usually is or the other places). It scars bad and is very contagious. The other thing can be one type of infection that then has a secondary infection, from havnig it so long.

I just think sometimes the docs are overly optimistic about how quick we should heal from these sores. It takes us a long time to fight any sort of infection so a three day window for herpes might not be appropriate for someone like my mom, who is on a tremendous amount of steroids and is older and herimmune system just is breaking down.

I hope you get it cleared up. Staph can be blisters like that. If you really have trouble, a dermatologist might be the best way to get it resolved, they are my heros lately because they really test and seem to resolve things like this and don't mind sick patients, at least mine doesn't.

Take care and if you get them in your mouth be sure to at least call in and get some special mouthwash or something from your rheumie, because they can last a long time if you don't do anything.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids

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