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Cold sores? #279872
01/29/18 09:49 PM
01/29/18 09:49 PM
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Drenha Offline OP
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Hi all. I am 3.5 weeks until sulfasalazine and woke up with my lips looking red, puffy, and burning a bit. I've never had a cold sore before and am wondering if a) that's what this is and b) it might be a side effect of sulfasalazine.

Anyone get cold sores (or other weird lip stuff) with this drug?

31 years old, spondyloarthritis diagnosis.

Re: Cold sores? [Re: Drenha] #279873
01/29/18 10:22 PM
01/29/18 10:22 PM
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Winston Offline
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Call your doctor. It could be indeed be a side effect of sulfasalazine causing your white count to drop too low.

Just fyi: A true cold sore resulting from the herpes simplex virus (type 1) tends to start with a tingling and/or burning sensation at the location where the sore will eventually develop. It doesn't tend to make your lips puffy all over. The sore develops with 24 hours or so of the tingling/burning starting.

Re: Cold sores? [Re: Drenha] #279874
01/29/18 10:40 PM
01/29/18 10:40 PM
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kcjulieann Offline
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Lip and mouth sores were a huge problem for me with both Sulfasalazine and Methotrexate. I carried a huge array of products trying to make it more comfortable.

Re: Cold sores? [Re: Drenha] #279879
01/30/18 03:06 AM
01/30/18 03:06 AM
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Drenha Offline OP
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Ugh, so sorry to hear that you had lip/mouth sores too. And I'll call my doctor. It's so hard to know what to ask my doctor about and what I should just deal with! I've also been feeling kind of rundown in general - exhausted for no reason and almost feel like I have a fever. My temp is totally normal though, so who knows.

Any idea what it could be if it's not a cold sore? I guess I'll have a better idea of what it might or might not be after the 24 hour mark tomorrow morning...

Re: Cold sores? [Re: Drenha] #279880
01/30/18 03:37 AM
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Drenha Offline OP
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Two more things - has anyone tried L-Lysine for cold sores? I'm also feeling a rubbery lump in the left side of my neck which I am assuming is a swollen lymph node. Does anyone get these without sore throat/cold symptoms? Like I said I'm very fatigued but don't have any signs of illness...

Re: Cold sores? [Re: Drenha] #279883
01/30/18 02:05 PM
01/30/18 02:05 PM
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Winston Offline
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Abreva is better for cold sores. You have to start applying it as soon as the sore appears. You can buy it at any pharmacy. Valtrex, if you can get it prescribed, is even better. It's possible you had a latent herpes simplex infection (the virus is extremely common). It's also possible you have an oral fungal infection. That's why you need to talk to your doctor to make sure you're treating it with the proper medication.

Re: Cold sores? [Re: Drenha] #279885
01/30/18 03:33 PM
01/30/18 03:33 PM
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SouthernMoss Offline
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Ice can help. Just be careful not to hold it to your lips too long at a time, because lip tissue is delicate.


Ginny - 57 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacement June 2014
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic
Re: Cold sores? [Re: Drenha] #279886
01/30/18 03:39 PM
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Drenha Offline OP
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Hmmm so no blister today, but my lips are still puffy and sensitive and kind of splotchy in color. I emailed my rheumy and got a terse "cold sores wouldn't be related to sulfasalazine ask your GP." I'll reach out to my GP. This might be related to spondy or medication at all - I wish I could just know!

Re: Cold sores? [Re: Drenha] #279887
01/30/18 05:27 PM
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ThreeG Offline
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It is probably worth seeing the GP if only to have the swollen gland looked at. Good luck. That sounds especially miserable, and having an unsympathetic doctor doesn't help!

Re: Cold sores? [Re: Drenha] #279888
01/30/18 05:42 PM
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SouthernMoss Offline
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Don't take the terseness personally. He/she was probably in a hurry (rheumies always are), and the written word can come across more stern than the same words said in person.

Next time you might try just providing the symptoms "woke up with my lips looking red, puffy, and burning a bit" and not speculate on what might be causing it. I have found that sometimes doctors will latch onto an off-hand comment I make and get so side-tracked that I have trouble bringing them back to the real issue, which in your case is whether or not this is a medication side effect.

I hope your GP can help you determine the cause of your issue. Let us know what he/she says.


Ginny - 57 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacement June 2014
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic
Re: Cold sores? [Re: Drenha] #279889
01/30/18 09:07 PM
01/30/18 09:07 PM
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Drenha Offline OP
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Thanks for the advice! In the age of Google, self-diagnosis is easy and tempting, but usually makes things more complicated. GP thinks I have some kind of viral infection which is no fun, but at least it will pass!

Re: Cold sores? [Re: Drenha] #279902
02/01/18 09:50 PM
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Drenha Offline OP
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Quick update - dozens of painful blisters ended up forming inside my mouth. My doctor did a swab for HSV, so we'll see. She didn't seem to think the mouth sores would be related to the sulfasalazine, which is interesting because I see it listed as a less common side effect on several sites.

Last edited by Drenha; 02/01/18 09:50 PM.
Re: Cold sores? [Re: Drenha] #279903
02/01/18 11:47 PM
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SouthernMoss Offline
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Mouth sores with MTX are usually ulcers so I assume the same would be true of mouth sores with SSZ. I've never taken SSZ so I can't say that with certainty.

A cluster of blisters is typical of cold sores, so I think your GP is probably right. Let us know what the swab shows.


Ginny - 57 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacement June 2014
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic
Re: Cold sores? [Re: Drenha] #279905
02/02/18 04:58 AM
02/02/18 04:58 AM
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Drenha Offline OP
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HSV came back negative. My feet have been feeling weird all day, and I'm suddenly noticing small blisters appearing on them. Time to email my doctor again... pretty certain she thinks I'm nuts.

Re: Cold sores? [Re: Drenha] #279911
02/02/18 03:47 PM
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Drenha Offline OP
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In case anyone's interested, my GP thinks it's Hand, Foot, and Mouth. Is it weird that I'm relieved that it's a virus with a name versus a reaction to my medication? I've been working with children ages 0-3 for 10 years and have seen waves of this virus wipe out my whole class. I (foolishly) assumed I was immune to it at this point. I haven't seen any blisters on my students this year, but I guess it's time to start checking...

Re: Cold sores? [Re: Drenha] #279913
02/02/18 05:27 PM
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ThreeG Offline
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I'm glad you got an answer. I hope it is short lived!

Re: Cold sores? [Re: Drenha] #279914
02/02/18 05:30 PM
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SouthernMoss Offline
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It's not weird that you are relieved. Especially if the sulfasalazine is helping, because you hate to give up something that works just because your body doesn't like it.

Sorry about the Hand, Foot and Mouth. Does your GP attribute the swollen lymph node to this as well?


Ginny - 57 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacement June 2014
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic
Re: Cold sores? [Re: SouthernMoss] #279916
02/02/18 09:00 PM
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Drenha Offline OP
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Yep! Seems like this was the cause of all of my symptoms - I feel like it's not usually this straightforward.

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