Cold sores and methotrexate: Hi I have developed a cold... - NRAS

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Cold sores and methotrexate

marie66 profile image
17 Replies

Hi I have developed a cold sore - should I delay/miss my methotrexate jab? M x

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marie66
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17 Replies
DRunnerchick profile image
DRunnerchick

Marie66,

Is it just a ‘regular’ oral cold sore? Do you have specific instructions from your rheum contraindicating the MTX? I ask all these questions because they are relevant. Cold sores can be caused by at least a dozen different things, many of which have no bearing on the MTX. If you are concerned that it may be a side effect you can contact your rheumatologist/nurse help line. When I was on MTX, I never delayed it until I had dozens of oral ulcers. I called my rheum and they stopped it and set me up with an urgent appointment (10 days on). It was a long drawn out process of diagnosics after that so don’t use me as your example. That was 2 years ago and they still don’t have it figured out.🤷🏻‍♀️

D🏃🏽‍♀️

Fiatowner profile image
Fiatowner in reply toDRunnerchick

I suffer from cold sores, even before MTX, never stopped an injection because of them but I do take folic acid 6 days a week on the advise of my Rheumy Nurse and have less outbreaks now. Also to help them clear quickly I always use compeed invisible cold sore plasters they are the best.

Bandido profile image
Bandido

Now been on MTX for 13 years and never stopped for any viral infection. That particular virus will quite often come out when you are stressed or upset You always have it but it just rarely surfaces. Your chemist or doctor should be able to sell you an antiviral cream eg aciclovir which will dispel it in a couple of days.

dickfend profile image
dickfend

Hi Marie I have had RA for 40 + years and have never stopped taking my medication except when instructed to do by my Rheumatologist or a doctor prior to having an operation or the likes. Methotrexate like other RA medications reduce the natural body defense systems and therefore opens the body to all manner of attack. I was continually having the eruption of sores around my mouth and went to my GP who referred me to a Dermatologist. They have put me on a tablet that within reason keeps these sore under control.

ann_martin37 profile image
ann_martin37

I asked my rheumatology nurse about this and was told that they didn’t advise stopping the medication unless it was a severe outbreak of cold sores.

marie66 profile image
marie66

Thanks for support guys. I got the cold sore cream and it’s settling down a bit so I’ll inject as usual ((hugs)) M x

Maeve31 profile image
Maeve31

I dont stop my Mtx.

I do use l lyseine as soon as I feel a tingle and often the cold sores don't come up or else they last a much shorter time and are less severe. I found the various creams useless but l lyseine is magic !

MissMinto profile image
MissMinto in reply toMaeve31

What form of lysine do you take - liquid/powder/tablets?

Maeve31 profile image
Maeve31 in reply toMissMinto

I take tablets. The pharmacist, and other ones since then, have said to take up to 2,000mg a day to forestall one coming up or to get rid of one quicker.

sand19 profile image
sand19 in reply toMaeve31

Hi Maeve31. I get cold sores all over my face. I spread them without knowing it and now they are everywhere. I have to start methotrexate and I am wondering if anything could help with cold sore outbreaks. Do you think Valtrex would help?

sand19 profile image
sand19 in reply toMaeve31

Hello again Maeve31. How much Lyseine do you take for your cold sores?

Maeve31 profile image
Maeve31 in reply tosand19

I've taken up to 2,000 mg a day but that's only for cold sores on my lip. I'd talk to your pharmist about them all over your face as it could be something else.

sand19 profile image
sand19 in reply toMaeve31

It is cokd sores. They were biopsied. They spread bc I put cream on my face not thinking the sore was contagious

Jimbo64 profile image
Jimbo64

Hi marie66 I have been taking methotrexate for years and I have never had a problem and I have never had a cold sore

nomoreheels profile image
nomoreheels

Like Jimbo I've never had a cold sore due to MTX. It is a common side effect though, sometimes eased by an increase in folic acid. If you're prescribed fewer than 5mg 6 days (every day except the day you inject) your Rheumy may ask you to increase the days you take it. Do you also take an NSAID? I ask as some can also cause cold sores so it's worth considering if they could be related to the one you take, if you do.

I wouldn't stop your MTX without discussing it with your Rheumy or nurse.

sand19 profile image
sand19 in reply tonomoreheels

Thank u. I never had cold sores until 3 wks ago. I had a terrible accident and to make a long story short, I accidentally spread cream on my face after touching an open cold sore and soread the virus all over my face. I am covered in cold sores and my rheumatologist said that I will have more outbreaks while on methotrexate and I am so afraid. I look awful and dont know what to do. I dont leave the house and if I am on methotrexate the rhuematoligist thinks they'll never go in remission.

nomoreheels profile image
nomoreheels in reply tosand19

Oh dear. Lesson learned the hard way. Well, here we take 5mg folic acid & increasing it to 6 a week (not MTX day) often helps ease cold sores but your normal 1mg won't as effective unfortunately, unless your Rheumy will prescribe 5mg, or folinic acid.

Your Rheumy may be right about further outbreaks, that was thought to be the case but some think otherwise, according to more recent Pub Med reviews of studies. Unfortunately I think the only way is test the water. Your Rheumy must think MTX is the better DMARD to bring your RD under control, that's the priority just now don't you think? If you have continued outbreaks then you'll need to discuss options with him. See how it goes.

Being run down doesn't help. Not much self help I can suggest, especially if you're not well controlled. Keeping your hands clean & avoiding touching your face are more obvious ones but otherwise I’m afraid it's waiting it out, 10 days should hopefully see them on their way.

You could ask your primary to prescribe an antiviral, he could recommend one of the clovir group of meds. If not helpful now it might be worth seeing him at the first tingle of an outbreak in future, if it does happen again.

Oddly my mother in law used to get cold sores whenever there was fresh gloss paint around. She found aciclovir worked best for her.

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