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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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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
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
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
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
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
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