Hello all. I have a nasty but relatively small cold sore in the corner of my mouth...am a bit run down after a little urology op under general anaesthetic 3 weeks ago...was gradually recovering when a houseguest came for the past week...meanwhile was managing a flare of big eroding lesions in my hard palette (am used to these). They'd nearly healed when the cold sore got going...was too tired to go out for Zovirax (I haven't had a cold sore in years...so none in the house).
But I was at tesco today & spoke to the pharmacist...of course he said it's best to start treating cold sores the minute they appear etc...we looked at the advice on a Zovirax box which warns immunosuppressed patients to be careful...so, he advised me to see my GP....I already have an appt to see her booked for tomorrow early afternoon, so no prob....but I know my GPs have only the most basic experience of lupus patients (I'm the only one they have), so if anyone here can give me the low down on us & cold sore treatment, I'll be v happy
NB I had chicken pox as a child, but have not had shingles. I have early onset diagnosed immunodeficiency (hypogammaglobulinaemia & lymphopenia) running alongside my version of infant onset SLE. I'm on daily hydroxy + myco....and hoping to start a 4 week 10mg pred taper soon
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Barnclown
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You do seem to be having a run of it at the moment!
I can't use zovirax as had a massive reaction and face swelled up so use blistex (used to be called blistese) as only medication that helps without reaction.I also rub an ice cube on them regularly as found sometimes you can stop the spread and burning by doing this.Difficult as due to Raynaud's I have to hold in a cloth but it might help you until gp can advise.
L-lysine, an antioxidant tablet, helps cold sores heal more quickly (500 mg). In the US there is a very good ointment called Abreva. It is expensive but non-prescription and has made my usually long-lasting cold sores go away in a couple of days. If they are just starting, they sometimes heal over night with this. I hope you have it there.
Thanks Paloma: will look into L-lysine & Abreva: both are new to me..it's always good to know alternatives👏👌🌺
PS Yikes: I can get L-lysine & Abreva from Amazon UK (: it's expensive....but gets really good reviews!)
Hi Barnclown,
It's sounds like the pharmacist is being a bit too cautious! Ointments generally aren't absorbed into the blood stream also the treatment for shingles and chickenpox in the immunosupressed is oral or IV Aciclovir ( Zovirax ) !
I did read once that coffee granules made into a paste and painted on the cold sore can help, will try to find the link!
Thanks so much Keyes: Sounds right to me...GRRREAT coffee granules tip.....hope you find the link for us....did feel a bit silly posting but I knew you guys would help me orient myself....my cautious reaction to the pharmacist is my version of common sense: because I've had plenty of cold sores respond ok to OTCs like Zovirax over the decades, but none during the 4 years since my infant onset lupus has been recognised & treated with immunosuppressive drugs ...and in the many years before this re-diagnosis + treatment i've had simple little things come close to literally doing me in (a thorn in my finger resisting antibiotics & turned into sepsis, a so-called arthritic lump that turned out to be a dangerously malignant tumour etc) so i tend to be careful about stuff. Thank goodness for our wonderful forum!☺️🌻
I always put some acetone on a cotton ball on the cold sore. press it for a few seconds, and do this a couple of times a day. Together with zovirax it works very well, I always make them disappear
This post is really interesting. I used to get cold sores a lot (mouth and nose - inside and out) and used Zorvirax. But since the lupus flared up in 2013 I haven't had them. I've had a sort of ulcer around my mouth instead. Thanks for sharing and for the tips. Barnclown let us know what your doctor says.
Am V Glad you're here & finding this interesting & helpful, Wendy.
And, yes, I think these sort of phases & changes in our disease patterns are really interesting...my mouth/throat & nose & ears have always shared certain predispositions (pulp lesions, ulcers, cracking & crusting etc)...I used to think: no wonder there is a dept of ENT devoted to them! Now I'm on systemic lupus meds, I have hardly any pulp lesions, cracking & crusting...I just have even worse erosive lesions on the hard palate...and now this cold sore (but maybe it'll be a once off!)
Will aim to get back after my GP appt: but if I'm slow, please remind me (I need all the help I can get with remembering things)
Hi Wendy39, its nice to know someone else gets the traveling mouth sores. I get them around my teeth like inflamed collars of blood, not an open lesion though. I get them occasionally and it can take a few weeks to pass from one side to the other of my mouth. I have tried chlorhexidine rinse RX and aggressive flossing and this usually relieves the pain along with warm salt water rinses to calm it down. I was a certified Dental assistant for 20 years and did temp work for many dentists in every aspect of the profession and never came across a diagnosis for this other than a lupie thing. It's nice to find out I'm not alone with this Lupus symptom. I do notice it comes on when I miss a night of flossing and am run down /flair maybe. It's so nice to have this site. The last 33 years, I like many struggled with my symptoms not having anyone to share them with other than my specialists. Thanks
One of the easiest ways to get rid of cold sores is garlic,when the sore begins its prickly,take some raw garlic &gently rub onto the area in question, do this on a regular basis to start with then stop. Clears up quicker than Doctors meds. I am on FB with other info if you wish. Hope all goes well for you.
My husband gets terrible cold sores and canker sore's and has tried everything prescription and nonprescription. Then we discovered clove oil. You have to mix it with a little bit of olive oil so that it doesn't burn you but within two days his sores are gone. It used to take about two weeks for them to go away, it's nothing short of a miracle for him. Worth a try.
Hello again all: well, I put "cold sores" on the list for my GP appt today, along with a load of other stuff: immunology, urology, physiotherapy, lupus meds...I had a double booking, meaning 20 min, which they let me have due to my being a "complex patient"...it went by in a flash, all v constructive...I got out, was waiting in line @the dispensary and:😨realised I'd forgotten to ask my cold sores question...I imagined charging back into her office: but, I knew I'd missed my opportunity...too late😖! But all is not lost: will aim to talk cold sores & hard palet erosions at my rheumatology appt in sept😉!
Many thanks to everyone for your suggestions: it's been a vvv helpful thread😘
You're on mycophenolate. it isn't recommended to combine myco with acyclovir because myco enhances the effect of the acyclovir. As you are applying it topically, though, there shouldn't be a problem. It's very different to taking antivirals at max dose for 7 days for shingles.
Mention it to the doctor but I'd say it's fine.
Having said all that I found that in my case Zovirax only stops the cold sore continue at the site but it doesn't prevent it re-occur in a separate location, so instead of one I end up with two. So now I just leave it alone, it only takes 4-5 days before it starts crusting etc (sorry for the vivid detail).
Great stuff, Purpletop! I especially am curious about the way myco might influence the choice of prescription cold sore treatments. I will ask rheumatology about this in sept.
Yesterday, when I neglected to ask my GP about this, I comforted myself by realising that this cold sore I have now has indeed turned the corner towards healing on its own without any specific treatment....the cycle this time is only 5 days since this sore began...I figure it could be gone within a total of 10 days. Now, thanks to everyones' help, I'll be ready for the next cold sore, with home remedies & OTCs.
I suffer from cold sores quite a lot - on my lips and sometimes my nose. I've found at the first sign of tingling I put an ice cube wrapped in a flannel on it for as long as possible. It feels very weird but seems to stop it in its tracks or at least it makes it heal much quicker. Sorry, but that's probably too late now and if its already healing up x
This is vvv interesting: littleeffie also wrote about ice cubes in her reply: I've never heard of this treatment: am definitely going to give it a go! Thanks so much!👏👍🌻
Will check these out too...thanks so much asarah...this thread has been amazing...I hope others will discover it over the months via searching on this forum: my feeling is that all these great tips will be helpful to many for some time to come☺️🌺🍀
I know this is quite old but tea bags and lysine work wonders for mine! You can get topical lysine balm for not very much in H&B and the tea bag ( green tea works best) hot (but not boiling obviously) pressed on it for as long as you can. Mine used to last weeks but go in days using these.
Thanks: it's never to late for good tips to arrive! Yes, I did try lysine & it really did seem to help: of all the suggestions, that's the one am going with. Will trial green teabag next time!
I love the search facility on this site! I felt my lip swelling up on Saturday morning and continued to swell on Sunday. But not like the cold sores I used to get. This was like a massive bluster both on the lip and above it. I had the look of someone who'd had one sided Botox injections in their lips. It has now scabbed over. It's huge. Easily the biggest sore I've ever had on my lips. I went to local Boots The Chemist this morning and told the lady I had lupus and was on MMF and hydroxy and she told me to try Boots own Aciclovir. I have just applied it and now reading here I shouldn't be using it! 🙈🙈 Lupus is a minefield. I'll be trying garlic or coffee instead. Thanks everyone. X
That's an AWFUL one: you poor thing: are you taking a photo? DO!!!!!!!
Sorry to say: this monster sounds a lot like my typical cold sore....
Since this discussion I've come to TRESURE lysine: after suffering for decades...it's like a dream come tru...so long as I move fast to apply at first symptoms
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