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[Member Discussions and Questions] Cold Sore Issues with Rheumatoid Arthritis?

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January 14, 2013

Issues with cold sores?

One member wrote in:

I have always suffered from cold sores but since having flares and being on Methotrexate it seems like when one heals another appears. Does anyone have this problem and what they use for it. I think my system is immune to Abreva, it no longer works.

Thank you in advance for taking the time to help her out and answer her message. (((pain-free internet hugs)))

What our members have said so far:

Sarah – I don’t get cold sores but get severe mouth sores since MTX. I had to increase my prescription folic acid dose. I am not sure if that would make a difference. You do take folic acid correct?

Michelle – Talk to your Dr. Methotrexate gives you sores. I’ve had this problem. I no longer take it and no sores. Mine were in my mouth.

Susan – I take acyclovir which works very well for me. Ask your doctor.

Terri – Can you take valtrex?

Betsie – I have the same problem. I was only on methotrexate for a short time. It made me sick. I’m on plaquinel. The cold sores seem to be getting worse. I had 4 in 2 months! The campho phenique used to work for me but it seems nothing works anymore!

Stephanie – Take lyseine. It will clear them up faster. You should also be on folic acid. For sores in your mouth mix equal parts Maalox and liquid Benadryl (same flavor!), swish, and spit.

Heather – My rheumy prescribed folic to take along with mtx. It helps with the side effects of mtx. Might wanna go buy folic acid and see if it helps. I never had any issues.

Amanda – I know you would hate to use another prescription, but there are prescriptions for cold sores. There is a pill, and a cream you can choose from.

Wanda – there are several prescription meds that you can get and they are highly effective…mtx will make sores..i sometimes feel like i have a cold sore but i medicate immediately and it never breaks the skin thank goodness.ice is also effective if you can stand to hold it on the sore for at least 5 minutes at a time…

Erin – Honestly, all i do is dry it out with alcohol and saturate it with carmex several times a day… abreva never has worked for me, nor has anything else I’ve tried.

Ailsa – Lots of folic acid

Stefanie – I get them too and I read that toothpaste dabbed on them dries them out. I put ice on first then toothpaste frequently. It worked really well the sore was much smaller and healed quickly. I also take 2 mg folic acid. Hope that helps.

Karen – My Doctor say’s that most of the time the cold sores are related to the MTX, it sucks but I haven’t found anything that really helps. I know we aren’t suppose to play with our meds but when this started happening to me, I split the MTX up and took it over 3 days instead of taking it all at once. I did this for about 2 weeks and it seemed to help. My Doctor said that while he didn’t want me to do this very often it did appear to help and it didn’t cause any problems with my RA.

Terri – I also have this problem, thanks for the tips

Lisa – I have taken folic acid for this same issue for 19 years. Was originally on methotrexate, but now on other meds (Rituxan, Arava, etc.). If I miss the 2 mg a day I get them immediately. I also get sores on my head, and the sores in the vaginal area. (no, not herpes, but seems like it). Doctor has also recommended biotin and lysine to prevent sores and heal sores up faster.

Danielle – Valtrex! I had three major ones, but had started seeing a derm after the first one. Just so happens, he had just returned from a conference and the FDA had approved a short, high dose course for those recently diagnosed. With the first, I was on the normal week long Rx, Bactroban ointment (to prevent secondary infection , as it was inside my nose) and told to hit it with 70%+ rubbing alcohol four times a day to dry it out. The remaining two, I did the short course-high dose and haven’t had one again. Derm said it helps prevent the virus from permanently rooting itself, or something of the sort. Haven’t had another in 8 years My mom uses a topical antiviral cream and has used valtrex for stubborn ones, as well. Good luck!

Nikki – I take valtrex as it works amazing! It’s heavy hospital grade stuff and clears it straight up! I swear by it and never leave the house without it! I’ve been getting cold sore since day one but being on mtx they r worse than ever … The joys of having no immune system to fight it off

Robin – I know L-Lysine works it’s a vitamin n u have to take everyday!!

Virginia – Get a plain black tea bag, get it wet with the warmest water you can stand and hold it on there as soon as you feel it coming on. Do it as often as you want. It relieves the pain and itching and will kill the virus so you won’t get a full blown cold sore or it won’t be as bad. It feels so good. Your immune system is suppressed instead of overactive now so your body’s not fighting the virus.

Jan – Try eating plain or vanilla yogurt (without fruit) with live bacteria in it. Might try probiotics, as well.

Jessica – I used to get them and when I increased my folic acid dose they went away. I take 4 folic acids a day. My mtx dose is 0.8 ml a week via injection.

April – Lysine for sure and talk to your Dr about folic acid.

Debbie – I get it on my eyelids, very painful. I’ve been on MTX for 19 yrs, and folic acid, acyclovir is what I’m taking right now but I have lots of pain and burning around eyeball and radiates to forehead and scalp, left side only. Headaches are horrible and nauseating, calling doc in AM.

Lily – I got Rx for Denavir (penciclovir cream) 1% …..Its helped me with my cold sores/fever blister…..I use to get them All the time but not since I got this medication I haven’t had one since

Jeanne – I get cold sores too, and like Erin, carmex works pretty darn good Mtx caused mouth sores, but had to quit that due to elevated liver enzymes and haven’t had mouth sore since stopping it. Getting ready to start Embrel now.

Stephanie – Doc put me on high dose of folic acid and that helps a lot.

Leona – I began mtx & enbrel in may & by June I had a cold sore & a few days later broke out in shingles on my lower back. This has happened every 3 months like clockwork. Crazy! It’s so damn frustrating, I believe it’s the compromised immune system. I started mtx alone in march & he added enbrel in may. Dr says these outbreaks are not related to the RA meds, but to stress.but I call BS! My primary doc prescribed acyclovir for the shingles. I take lysine every day now – and use abreva for a cold sore when I get one. I’m not that stressed out to be getting shingles & cold sores every three months when before that, I had not had one in at least 10 yrs or more!

Carol – Lysine!!! Without doubt it works for me! Good luck..

Melissa – I have an awesome dentist who uses new laser therapy. Zaps them as soon as you feel them. It works wonders and is very inexpensive. Considering abreva costs $20 for a tiny tube.

Shandy – Debbie I’m the exact same situation as u with MTX injections & have had awful headache&pain radiating L side! Even with the 5 mg of folic acid a day I’m still getting cold sores (Dr gave me script so hope it works)&laid up,nausea&pain hoping it starts to work this is my 3rd try at it as allergies to other RA meds or lowered platelets&white cells! So glad others understand Ty !

Barbara – Blistex. I have a large one. I think it’s heat induced sometimes.

Pamela – I’m only on the plaquenil but I get them as well – I thought it was either part of my Sjorgrens or Lupus – since I have them as well as the RA.

Shawnee – Everyone one Mtx should be on folic acid and I know this my sound crazy but a pharmacist I work with recommends putting ice on it immediately when you first feel the tingling on you lip/mouth. I have done this many of times and it truely works. There was one time that it didn’t work and I think it was because I didn’t catch it in time and I messed with it to much. Hope it works/helps you too.

Jeri – My son has migraines triggered by mtx. They switched him from folic acid to leucovorin and that also helped control the mtx nausea better. He takes Topamax to prevent migraines.

Alison – Debbie, that’s shingles! Get on meds immediately.

Mari – I tried everything possible until I was prescribed Triamcinolone (kenalog in oral base) it works great, however eventually I had to quit methotrexate because they began to spread down into my stomach (frolic acid and Leucovorin helped but for me it wasn’t enough.

Corrine – My dr. put me on acyclovir.

Emily – U can take valtrex for it. They are a form of herpes and since u have a compromised immune system wouldn’t hurt to ask your dr. I know a couple people that take it for that.

Rae – I have never been bothered with fever blisters but lately I have been having them… It seems like I am getting them often… I also have these flares that include having nerve pain on one side of my face….

Amber – When I took methotrexate the doctor gave me a prescription for aclycovir i am sure that is not the spelling but it is an antiviral for herpes but it worked awesome for the mouth sores on the inside of my mouth and lidocaine to numb them. This was the only combo that worked

Pam – A Canadian friend told me their drs. prescribe L-lysine supplements for cold sores. This is for the herpes simplex kind of cold sore. You can only get it by prescription in Canada but not here. They’re right in the store with vitamins. I began taking l-lysine the next time I got one – it’s less than $5 a bottle. I had my sore for a couple of days before I started because I couldn’t get to the store. Anyway, the first day I took one 3x a day and it stopped growing. The next day, it was visibly drying up & smaller. The next, almost gone. It was amazing. And I keep them on hand ever since. Hope you find the answer to yours! I have kept them from recurring now for 2 years by taking one a day.

Catrina – It may sound crazy but I keep my lips covered with bag balm. When I first started methotrexate the corners of my mouth split painfully. I tried everything but nothing worked until I started using bag balm. Every once in a while I’ll still get a bit of a tingle on the lip but I just put on the bag balm more frequently and it disappears before it becomes a full blown sore.

Becky – What is bag balm ?

Catrina – It was originally used for cow udders to keep them soft. You can find it in the drug store in a big green can.

Pam – I get them in my nose… grrrrr

Louise – I never got them until on mtx. But a MD gave me script for valtrex. It is Antiviral. Helps. You take right when u feel lip sore. It either stops it or cuts time u have it. I think it is mtx.

Catrina – It works great on rashes and extreme dry skin too. I swear by it! I have sjogrens so my lips are so dry, chapstick or blistex etc. only made it worse. Bag balm keeps my lips healthy and soft.

Eva – If it was me, I would get off those meds and ask for the newer biologics. Mtx made me feel horrible.

Ange – If you don’t take folic acid you will get bad cold sores, I did as well but since having folic acid I’m fine

Clare – I have had two in the last week and they have not developed into cold sores as I take aciclovir tablets 5 times a day when I feel the tingle

Lisa – I use a tablet called L Lysine. 1000 mg. It’s an amino acid & I’ve been using it for about 5 yrs. have gone from 5-6 a yr down to about 1. I take it 3 or 4 times a week, when a cold sore comes I take 3 in a day for a few days & then it doesn’t progress.

Shannon – Take the vitamin L-Lysine daily. It works to heal and prevent.

Cheryl – I get little ulcers in my mouth

Sherry – I take Valtrex for mine.

Sharna – I use Zovirax. I get sold sores so bad, every time my immune system is fighting something off one appears.

Roxanne – Zovirax, absolutely rely on that stuff clears them up overnight x

Invisible Arthur – RA in the UK B12 injections – get checked for pernicious anaemia – common in people with immune disorders. RA in the UK I suffered for years as a child with coldsores, mouth ulcers etc until a simple blood test for B12 deficiency.

RA Warriors Philippines – As we treat RA and its symptoms with diff meds, our body adapt to the pharmaceutical chemicals we introduce. It takes awhile for some meds to take effect and others are instant. However, Autoimmune diseases means the body attacks it’s own. So whatever we introduce to our body, it’ll get defeated sooner or later. Every RA patient is different that’s why some gets better, some don’t, and some get worse while some get more probs than what they already have. Continue to follow your doctor and try to find ways to make you immune system healthy. Remember, if you treat the symptoms, you just fix the symptoms, but if you treat the immune system, you fix RA and everything else. Good luck and hope you find what works for you!

Sherry – I agree folic acid helps me tremendously with mouth sores.

Crystal – Not cold sores, but skin sores… I had to be put on a long term daily anti-biotic. Doxycycline It’s supposed to help with RA symptoms too. I’m just thankful to not have staph all the time now.

Kelly – Lysine. Double the dose and take it twice a day. Also frolic acid. Good luck!

Amanda – I take metanx or folast for it.

Rhoda – Have them tested and ask you dr for meds for them. There is a cream that is great. But since I have been on the methotrexate I have gotten them less frequently. .

Shirley – I have been nervous of going on methotrexate for this same reason. I am currently on plaquenil twice daily and lodeine every night. I have recurring cold sores and last year these were almost every month (ie: cyclical). As soon as they appeared I would also have a major joints flare up too. (I often wonder if the cold sore virus is what initially triggered my inflammatory arthritis). I discussed all my concerns with my GP and he has put me on a daily dose of oral Aciclovir tablets – 400mg x 2 daily which is helping. It’s a 6 month trial to see if this will also help settle my arthritis flare ups. If it doesn’t have a significant enough benefit I will agree to go on methotrexate and my rheumatologist has advised that if necessary I can still continue with this preventative Aciclovir medication. Hope this is useful.

Jan – There is a vitamin called L-Lising (spelling might be off but that is how it is prnounced). It completely got rid of mine.

Charla – I get them really bad, ,and usually always have at least one of them…in my nose mostly. When I was on Methotrexate, they gave me folic acid, and they didn’t seem so bad. But, took me off of the MTX (due to concerning liver issues) and no longer give me the folic acid. I do take one lysine capsule a day, and it does not prevent them, but they may be worse without it it. Hope you can get them to clear up. I know it is miserable.

Karen – Prescription folic acid

Lynna – So glad I saw the L Lysine info…I’ve had cold sores at the corners of my mouth and in my nose since I got a Flu bug over 2 weeks ago. Definitely will give this a try and hopefully they will go away!!! Funny the cat doctor put our cat on L Lysine for Herpes Virus in her eyes…they say it’s common in cats.

Lee – I take L-Lysine everyday – as well as folic acid. I used to get cold sores all the time – but have not had one in MANY months (now I’ll get one )

Staci – I have a prescrip for Famciclovir, I take 250 mg daily and if I feel one coming on I take a 500 mg on top of that…it seems to help. I am also on colic acid and L-Lysine (1000 mg) daily as well, I up it to 3000 mg daily if I feel one coming.

Vee – If it no longer works tell the physician. Folic acid helps with the Metho sores. Good luck.

Anne – Can’t shift verrucas…stopped methotrexate once and they disappeared..restarted and back they came… Would L Lysine help wit this?

Melissa – Ask for leucovorin┬áto take day after instead of folic acid. Helped me.

Glenda – I had to go off Methotrexate because I had sores in my mouth and nose and all over my lips. They said I was allergic to it. You might want to check with your specialist.

Janet – My doctor has finally conceded that MTX might be a bad idea for me. I get cold sores, repeated cases of bronchitis, you name it. It’s worth exploring some alternative therapies for pain relief and perhaps backing down to plaquenil or even prednisone for flare times. Mtx is rough on the immune system.

Marcy – take folic acid while on metho—–it helps tremendously. not sure if someone already said this as I didn’t read through all the other posts. My doc ALWAYS prescribes folic acid with metho—its protocol—at least where I am from.

Tammy – I have had problems with cold sores off and on, but lately on. I have been sick and small flares, that must be the trigger. Thanks, great information.

Dana – yes yes yes! take 2 g of folic acid a day. I’m a nurse and know you have to replace your folic acid while on methotrexate. I had at least one sore a month, which isnt bad , but one is bad enough!

Louise – Wow this is great to hear that others have same issues. MDs are good but I found out by accident that people with RA get cold sores. Love the tips.

Corrinne – My Rheumy recommends at least 5 mg of folic a day but I still get occaisional canker sores and cold sores.

Amy – I had to go off the Mtx because my oral ulcers got so bad and would not go away.

Shannon – Lysine works like magic. There is ointment in the lip section and a tablet in the supplement section in the drug store. I used to get them all the time being in Arava and Remicade infusions.

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The above is a discussion created by a member and with member generated responses from our Facebook community (facebook.com/rachicks) put into a format so that the discussion can be archived for future answers needed by others in a searchable format while keeping member anonymity. Member provided information, statements and opinions do not reflect on RAChicks.com or all individuals with Autoimmune Arthritis. We encourage all members to seek professional medical advice for any specific questions and concerns as this does not substitute competent medical care.

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