Oral herpes / mouth sores won't go away help - NRAS

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Oral herpes / mouth sores won't go away help

ragurl profile image
11 Replies

Hi ... I am new to the group and desperate for solution. I have had RA for 28 years. I am on Humira, prednisone, arava, Motrin 800 for past 10 years no real issues. In may 2017 I had a oral herpes outbreak like never before. Sores inside mouth, cheeks, gums, lips, throat, and burning tongue. Doctor prescribed acyclovir and it still took 8 weeks to heal and they are back. Going on 4 weeks trying valtrex. Anybody relate or have a solution / scared and sad

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ragurl
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11 Replies
SoulmanPaul profile image
SoulmanPaul

Hi. You have my sympathy and empathy as I had Shingles last year. Apart from sores on my scalp face and inside one ear, I had a number of sores on my tongue. It was very scary and just to make things worse I got oral Thrush too! It's left a bald patch on my tongue. I'd had a depo medrone shot a few days before and my rheumy believes that's what triggered it. As a result she hasn't allowed any steroids since.

Paul

hatshepsut profile image
hatshepsut

Difflam mouthwash is excellent...anaesthetises and heals

ragurl profile image
ragurl in reply to hatshepsut

Thanks

SoulmanPaul profile image
SoulmanPaul

Ps. Just to add...it took 4 different Drs before I got correctly diagnosed! I was on Acyclovir too...the highest dose-5 a day for 7 days. Dr said on that dose it shouldn't return however there was an increased risk of post herpetic neuralgia, which I do suffer from time to time.

ragurl profile image
ragurl in reply to SoulmanPaul

Getting a correct diagnosis is key I believe. Right now they are saying it's the Humira - funny thing is the Humira is working so well for the RA. Thank you for sharing your experience

SoulmanPaul profile image
SoulmanPaul in reply to ragurl

You're very welcome. I do hope it gets figured out soon for you.

Paul

ragurl profile image
ragurl in reply to SoulmanPaul

Doctor said, could be thrush with shingles. Going to take Valtrex, a medication for Thrush, and stop the Humira and prednisone. Sad about the Humira- do you take Humira still?

SoulmanPaul profile image
SoulmanPaul in reply to ragurl

I've never taken Humira-I'm on Mtx which is well known for causing mouth ulcers. The solution is to take Folic acid. I don't know if Humira has similar issues.

jewel8888 profile image
jewel8888

I have to take acyclovir on regular schedule, yrs of having the type two but similar. If I feel I'm getting flu feeling I take more than my usual two and if had enough get valtrex since it is more potentent. I don't drink it instantly gives me Candida and need my ometrezaprol, spelling ?. The first outbreak is always the worse, and if I get any type infection brings on symptoms. My sympathies but I know it will get better for you. I had to stop humira and take just methotrexate which reduces the problem. Your not alone and know that we care for you very much.

ragurl profile image
ragurl in reply to jewel8888

Thank you.

Mandy8175 profile image
Mandy8175

I believe a folic acid deficiency causes sores, lesions, and ulcers in the mouth as well. Have the rheumatologist check for deficiency.

I will pray for you, I can't imagine how you must feel! I hope you have a speedy recovery!

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