Mouth and lip sores

[Nanna71]

What are folks doing to mitigate these? I have one cold sore (herpes) and the occasional raw spot in my mouth. I haven't had a cold sore since I was a kid so I imagine this is meds related?

[nomoreheels]

It could be a reaction to your increase in MTX Nanna. We've talked about folic acid before, maybe your Internist would sanction another one so you're taking it all 6 days, it might just solve the problem or ease them. Difflam mouth wash might also help if you have that there? It's main ingredient is benzydamine. Or Zovirax topical cream for colds sores, main ingredient aciclovir.

Seems odd calling you Nanna, that's what I called my Grandmother, that or Nan. 😌

[Nanna71 in reply to nomoreheels]

Thank you for the response. Because my grandkids ( 6 of them ages 5 to 26) and I have one great grandkid (age 2) all call me Nanna, so do my adult children, their friends, and even people my own age. I'm not sure if I would respond to my own name any more. 😃

[New50]

Holland&Barrett sell a supplement called lysine, I read somewhere that it suppresses the Herpes virus and the kinds of meds they give for RA can wake up the virus. Might be worth a go xxx

[Nanna71 in reply to New50]

That's a name I recognize - lysine - thank you. I'll do some research.

[Mmrr]

I have mouth ulcers due to MTX I use difflam throat rinse, which I get in prescription a d find it really takes the sting out them and calms the myositis which I also get.

[Nanna71 in reply to Mmrr]

That's 2 for the mouth rinse. I don't recognize the name but we must have it here with some other name. Thank you for the tip

[nomoreheels in reply to Nanna71]

Tantum possibly? bodyandhealth.canada.com/dr...

[Hessie5]

I was getting these as was eating too many nuts which contain argine. Try adding lysine supplement, it works a treat. To treat the cold sore I use Iodine. All the best. Hessie

[Joy_1]

If it turns out to be MTX related Nanna then I hopefully have the perfect solution. Well at least it worked for me.

Saline (salty water) for up to 5 times a day. I had horrific mouth ulcers from taking MTX, it was worse than having RA! A pharmacist told me don't waste your money on tablets or mouth washes just go down the saline route.

Basically I held the saline in my mouth for 1 minute 5 times a day. I could not swill it around my mouth as he suggested as it was too painful + used warm water as also too painful to use cold water plus more salt dissolves in warm water. All gone within 2 weeks. After that I repeated the process for 48hrs after taking my weekly dose of MTX as I could feel them coming back. Did this for a couple of months and now no more mouth ulcers. They only try to return when I am run down but the saline stops them in their tracks!

[Nanna71 in reply to Joy_1]

I can totally afford to do that. Have started already. Thanks so much! Also, what amount of MTX were (are) you on?

[Joy_1 in reply to Nanna71]

I was on 15mg (oral). I am now on 20mg (jab). 20mg works for me.

You need to be quite disciplined with the saline rinses Nanna. It was easy for me as I was in so much pain and of course struggled to eat.

The pharmacist putting it super simply said that the MTX was obviously dampening down my immune system. And that one of the 'dirtiest' places was our mouths. Hence an increase in 'mouth issues'. The saline 'disinfects' the mouth.

[Nanna71 in reply to Joy_1]

I am on 15 mg's MTX and hoping to stay there, however, I have a lot of pain still, which sort of lessens as the day wears on. By 1pm I start to feel like I can do something. It doesn't feel like remission to me at all. Half of the day is pretty crappy. I wonder if I should ask for more or different? Or is this considered the best I can be?

[Joy_1 in reply to Nanna71]

That's a tough one Nanna ....

I have been playing the game of coming off steroids for 5 years. Every time I hit 5.5mg Pred I would flare badly. So I was moved from Azathioprine to MTX. But I flared at 15mg MTX so the dose was increased to 17.5mg. This process took an age as each time I flared I went back up to 15 or 20mg of Pred and then played a slow game of reduction again.

To cut a 5 year story short, it was only 20mg MTX that has allowed me to thus far not flare. I am now at 2mg Pred (hooray!). And I and the consultant of course are aiming for zero. 20mg MTX has given me my life back.

With the last couple of drops in Pred I have experienced quite a bit of pain for the first couple weeks. Paracetamol more of less knocks it on the head. Do painkillers not allow you to get mobile earlier in the day?

What about your inflammatory markers? Mine are no gauge at all as regardless of flaring or not they stay nicely in the 'normal zone'.

I would suggest you go back and ask. I was told that the average dose of MTX was 15mg but on further reading it appeared 15 to 20mg was the average dose.

My mother-in-laws neighbour had to hit 25mg MTX (max dose they will give you as I understand it) before she managed to get off steroids. She is now pain free. However she also has no side effects with MTX what so ever. No nausea, no headaches, no mouth ulcers - wow!

[Nanna71 in reply to Joy_1]

Well, that's encouraging to know. Blood work tomorrow at the Red Cross Outpost and then to the Internist in a week. I also have no side effects other than these mouth things. At least, that I know of. I suppose MTX could be shredding my bones or something but, my goodness, my immune system is hard to turn around.

[AndrewT]

Dear Nanna71,

I don't have your condition exactly, I have Vasculitis, however- Every night, after cleaning my teeth, I keep some of the 'Rinsing Water' aside. I then use Corsodyl Mouthwash, as instructed (rinse for a minute, or two). I then spit this mouthwash into the 'Rinsing Water', that I had kept aside. I use, this mixture, to Gargle with for maybe two, to three, minutes. Despite my immunosuppression, doubly so- due to a Kidney Transplant, I have VERY little problem with 'Sore Mouth', or Abscesses. I'm not saying that I don't get Any problems, that would be a lie, but certainly not many.

I just thought that I would pass this tip, given to me a long Time Ago, on. Since we are still in January....Happy New Year.

AndrewT

[Nanna71 in reply to AndrewT]

My extenuating circumstance is that I have (and since a child) chronic periodal disease. I have paid a small fortune during my life to keep that at bay and keep my teeth. This RA is probably making it worse. Thank you for the advice. What on earth is vasculitis?

[Nanna71 in reply to AndrewT]

Also, the spelling for that is periodontal. Sorry.

[AndrewT]

Dear Nanna71,

Vasculitis is an Autoimmune Condition....Ok, let me explain. Essentially your own body's Immune System, the system that protects us from disease, attacks YOU instead of 'Invading' organisms. Vasculitis, attacks the Vascular (Circulatory) Systems, in the body. Basically, this Horrible Disease, can attack ANYWHERE your blood flows. In my case it attacked my Heart, Brain and Kidneys. I had a Kidney Transplant, at Addenbrooke's Hospital (Cambridge), in July 2013. The Treatment, there is no actual cure, is Immunosuppressant Drugs which keep 'Things' at bay. However reducing the Immune System, leaves you 'Open' to, all manor of Conditions- including Mouth/ Periodontal problems.

So you see why, I thought, I would 'Pass On' my experiences, to you, Nanna71.

Kindest Wishes.

AndrewT

[Nanna71 in reply to AndrewT]

Thank you so much. I am in awe of your troubles. God bless you somehow.

[AndrewT]

Dear Nanna71,

Thank you, for your kind Comment, I do appreciate it. Further to MY comment, on Corsodyl Mouthwash, I have recently been given, a Denture Soaking Container. This consists of an Outer Container, with a removable 'Basket' inside, into which the Denture is placed. I am putting the Mouthwash solution into this unit and, using it, to soak my Denture overnight. So far it seems quite effective, I'll let you know.

I don't mean, to pry, but, from what you are saying- Red Cross Outpost, for example, I don't think that you are in the UK. Can I ask where are from please? This does NOT, by any stretch Matter, I'm just curious, as your English is so good. Now it's, my turn, to give the Compliments.

Make you smile, I hope....If you take the Salt, Pepper, Mustard and so forth into the Kitchen....Is that Condiments, to the chef? Sorry...I'll stick to the Two snakes going along- one, turns to the other and asks "Are we poisonous?". The other replies "I haven't a clue, why?". To which, the first, replies...…..Wait, for this...….Not long now...…."I've just bitten, my lip". Two Australians, way out, in the Outback. One steps behind a rock, to relieve himself when, he suddenly shouts "Quick Mate, get onto the Flying Doctor, I've been bitten by a Snake!". His Friend dutifully Phone the Doctor "Doc Mate, my Mates been bitten by a Snake, what can I do?" "It's Most Important, that you, suck out the poison or your Mate's gonna die". In increasing agony, the bitten man, askes "What does the Doc say Mate?" To which, the man replies...…..again, wait for it...…...I bet your 'itching', for the answer now......Keep Itching...….Ok......the man says "You're Gonna Die Mate!".

Anyway, I must away, Nanna71.

Your friend

AndrewT

[Nanna71 in reply to AndrewT]

I live in Canada in a remote area in the Rocky Mountains - province BC. I've been here 3 years now and came to help my daughter buy a property so she could do some 'homesteading'. However, I am left alone now - long sad but true story. What a difference from small town Ontario where I grew up.

So - one and one half hours from the nearest town and about 10 minutes from the village because my driveway is 2 Km's long. I was snowed in last winter for about 2 months. The village has about 60 people total. No cell phone service, and the internet is satellite. Huge ranches here and everyone is a cowboy. I have 20 acres and 2 homes - mine is in the side of a mountain. Water springs come out of the mountains here everywhere as does my water source which is farther up the mountain and runs to my system by gravity only.

I was diagnosed just 2 months ago with RA and don't know if I can do this life yet.

Don't have dentures so don't know about their problems.

Home schooled my children and grandchildren which could account for knowing English, although I'm not that careful to use good grammar here 😊. Excuse me for being so wordy. Trying to get the idea across of what it's like.

[AndrewT in reply to Nanna71]

Dear Nanna71,

Your home sounds Beautiful.....Remote, but Lovely! Water Springs, delivering the Freshest Water, Two homes....Wow......but.....The Internet is by Satellite, the Newspapers arrive by Camel- once a month, Petrol (Gas) is by 'Special Arrangement' with the Military! Electricity is only available, every other Tuesday- between 2 and 6, except in August. Toothpaste is made by 'What's-her-name' in The Outhouse. The shops sell 'Meat', without telling you What type exactly- it's 'Just a rumour' that someone's cat died, nothing more. Contact with 'The Outside', other than by Internet, is limited to twice a year......As I said a lovely Home!

Please excuse me Teasing you so, Nanna71, it's just my Silly/ Stupid Imagination...It's got 'the better' of me....Sorry! You say that 'Everyone's a Cowboy', surely some are CowGIRLS, yourself included. I must Away now Nanna71, I have a cab coming soon. Enjoy your Beautiful home(s) and, please Forgive, my Teasing you so....

AndrewT