To be or not to be a symptom? That is the question.

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Regular Member

Date Joined Mar 2007
Total Posts : 194
   Posted 2/12/2008 1:30 AM (GMT -6)   
Started my clopsorine and for those who havent heard of it , it is an immunosuppressant. I felt like the inside of my mouth was raw yesterday. I woke up today and it felt like the skin was very thin and sore. It was red and had bit of a swollen look. I woke up tonight and when I moved my mouth I had pain so I decided to look. I have a rather large blister for lack of a better word. It is centered in the bottom lip and goes out on both sides with a yellow center. The lip is angry red, I have never had this before. I looked it up online and keep finding herpies? How the hell would I get herpies on my mouth!? Can an immunesuppressant do this to me? I just started last wed so it hasnt even been a full week and I am not even at the right dose yet. I put camphor on it not knowing what the heck it is but it helped a teeny bit with the burning sensation. You guys get this from your meds?

Veteran Member

Date Joined Mar 2005
Total Posts : 2486
   Posted 2/12/2008 1:50 AM (GMT -6)   
I don't think it's herpes! I think it is a canker sore! Which would make sense, because canker sores start rearing their ugly heads if you're immunosuppressed. Try some of that numbing stuff (Anbesol, I think it's called)...and go easy on the sour/acidic stuff, and easy when you're brushing. Those can be very painful. Hang in there!
Co-moderator - IBS Forum

Regular Member

Date Joined Mar 2007
Total Posts : 194
   Posted 2/12/2008 3:47 AM (GMT -6)   
I am not sure. I went back and googled canker sore. Its on the edge of inside my lip and outside my lip. Apthous uclers/canker sores are in the sides of the mouth and the roof of the mouth. I am not sure if its herpies or canker . The camphor has helped quite a bit with the pain so thats good. Just not sure if its a Lupus thing or a immunosuppressant thing. I dont want to call the Dr. in the morning and make an a@@ out of myself . I want them to know when I call its legit and not me making a mountain out of a molehill. Lupus sores are not something I ever call my rhuemy over and they tend to be in the sides of my mouth. I think if its an immunpsuressant related thing they might want to know? You know what? The Dr.'s get so aggravated when you waste their time and yet when you dont bring something to their attention thats important they get angry. They FORCE us into the situations of playing Dr. with their rotten holier than thou attitudes. I hate that I ruminate over when to call and when not to call, do I sound like a fool or is my complaint valid?

I have a 14 year old son very sick with AI disease and I have never been wrong with alarm bells with him. I know when to take him and when not to take him. Why is my perspective so off with my own body? You would think it being my own I would have a better grasp on things........Maybe with pediatrics the Dr.'s just care more than they do for adults?

Veteran Member

Date Joined May 2005
Total Posts : 7720
   Posted 2/12/2008 9:56 AM (GMT -6)   
There is a form of herpes, Herpes Simplex 1, that only occurs around the mouth -- and sometimes up into the nose. (Herpes may also occur in the eyes, I believe that is the same strain.) Herpes Simplex 1 is most often referred to as "fever blisters". It usually, but not always, occurs as a cluster of small blisters.

I've had it all my life -- I've read where it is hereditary rather than something you catch. It is not a STD, although if you have blisters or the pre-blister itching it can be transmitted to the genitals thru oral-genital contact.

It usually does not flare unless a person is running a fever or is under stress, and does look significantly different than a cancer sore, and has a very distinct itchy/tingly/burning sensation at first. My flares increased significantly once I developed Lupus -- I now take a daily medication, Valtrex, to avoid flares of fever blisters.

If you do not see your doctor soon, try and take a picture (as close up as you can get) to take to "show and tell" later. It is not something to worry about -- and can be controlled if you start getting them too often.

I suspect it is a reaction your body is having while it gets used to your new medication, and that you may never have another occurrence after your body gets used to the med.

PS. I've also had cankor sores, and they do not have the burning/tingly sensation that fever blisters do.

Lynnwood, Co-Moderator: Lupus Forum

Dx Lupus since '00, new Dr wants to Dx Fibro instead....
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions

Veteran Member

Date Joined Mar 2006
Total Posts : 2608
   Posted 2/12/2008 9:56 AM (GMT -6)   

Have you googled cyclopsorine for side effects? What you have doesn't sound like a side effect for the drug, but better safe than sorry. If your rheumy has a good nurse, call and talk to her. Most doctors' nurses know a lot more than we give them credit for and they are usually happy to talk to you if you approach them the right way. A good nurse can be your best ally.

Lupus, Sjogren's, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 2/12/2008 10:03 AM (GMT -6)   
Hey Chaya,
You can get herpies in your mouth, but it's not genital herpes.  It's the herpes simplex 1.  It's very common, and produces those ulcer type canker sores.  My mom has had them most of her life.  If you're immune suppressed, you're more likely to get this type of herpies. Genital herpes is simplex 2.

Just let your rheumy know about them, and they can determine if it's the herpies simplex 1 or if it's from your lupus.  Regardless of what it is, there isn't a cure for it.  My mom uses the "Equate" brand mouthwash from Walmart!  She says it works perfectly at keeping those little buggers from even forming!  She uses it every day a couple of times.  And it's cheap!
Hope they go away quickly for ya,
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

33 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, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

Regular Member

Date Joined Mar 2007
Total Posts : 194
   Posted 2/12/2008 3:22 PM (GMT -6)   
Its official! It is not herpies and it is an apthous ulcer. The thing is I usually get them in the side of my mouth not on the inside of my lip. The lip is sore but not painful really. Its just big and feels nasty and camphor seems to work fine. It no longer has any sensation in it except I need to be careful how I move my lips and what I eat as its sore. I am down to 5 mgs of pred now and cyclosporine is new. I did not show the rhuemy and in past expereince when I took a photo he didnt take the time to even glance at it! He is the only Rhuemy my insurance carries in my area so I am screwed and stuck with him and yes I am sure lol. We get new insurance in aug and I can reval my situation. I did call the urologist and let them know so we will see what he thinks.

Regular Member

Date Joined Sep 2007
Total Posts : 36
   Posted 2/12/2008 6:42 PM (GMT -6)   

Hi Chaya,

We've got the same problem with our rheumy... there are only a handful our insurance takes, which is surprising since Blue Choice is so huge.  My father is incredibally stubborn and refuses to go to the rheumy most times, because he won't listen to him.  Our PCP actually handles most of our stuff, since he knows us so well. 


Good luck with your own rheumy, and glad to hear the lip is under control!



Regular Member

Date Joined Mar 2007
Total Posts : 194
   Posted 2/12/2008 6:49 PM (GMT -6)   
Transplant/Urologist Dr called and said the ulcers are NOT from cyclosporine and from Lupus. They also upped my dose another 100mgs a day. I hope they are right!!!! I do like to use my mouth for simple things like eating and oh yeah talking? So I am to buy something called kanker at the drug store and use it.

Veteran Member

Date Joined Oct 2004
Total Posts : 2244
   Posted 2/12/2008 8:08 PM (GMT -6)   
I get terrible mouth sores from lupus. My doctor gave me 2 Rx's, one is called "magic mouthwash", it's 3 ingredients your pharmacist mixes for you and a dental paste. She also put me on folic acid which helps more than anything. I know some side effects of immunesuppressant drugs are mouth sores, maybe not the one you are on though. I hope they feel better soon.

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's 1999, Celiac Disease (AKA: gluten sensitivity) 2003, Raynaud's 2004, Lupus 2005 and Sjogrens 2006
Meds: Imuran, Plaquenil, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed), Magnesium Citrate and magic mouthwash (as needed for mouthsores)

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