The Australian Sjögren's Syndrome Association
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Anyone have any ideas ,Trouble with lip sores ! I have Sjogren’s Syndrome, Lupus & Arthritis

Anyone have any ideas ,Trouble with  lip sores !  I have Sjogren’s Syndrome, Lupus & Arthritis

Hi,Everyone,

I’m after some advice I have Sjögren’s Syndrome, Lupus & Arthritis.

I’ve had sores , cracks etc around mouth for a couple of months now, extremely sore. Improves then gets horrific and bleeding by next day. Just up and down. Dr has given me steriods , steriod mixed with canasten Incase the sores have turned fungal. I then get rock hard crust, I can’t move my mouth ( literally) then it peels off naturally then crusts again. I’ve also had sores on my body which dermatology have said is UV allergy, which makes no sense as it’s in places that are uncovered but also places that are not uncovered, ever.

It’s more like a psoriasis type growth of skin , same on my body all small circles of scaly skin about size of dot up to a small coin sizes , all over. If skin gets damaged ( like scratched) it then turns to crust.

I know Sjögren’s can cause a lot of skin issues with some people.

If anyone has any ideas or has had this and can give advise that I could speak to my Dr about before I get to see my consultant, it would be great

. Will upload a picture !

Oh and etc info if it helps . I’m on monthly biological Abadacept infusions, my white cell count is 0.9 at the moment. So it’s low lately.

I take hydroxychloraquine 400mg daily

Plus loads of other tablets, we all are used to taking with these conditions. No new drugs though.

( could it be my immune system) I’ve been feeling rough for the couple of months. Maybe my lips and skin just can’t heal ??

Thanks

Mellisa 🌸

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Hello Mellisa.

I feel for you as I have just completed 2 weeks of a Canesten type treatment for Thrush that is fungal but left un treatedbecame a nasty painful infection. The oral facial surgeon was intrigued that neither a GP nor dentist had treated 3 months ago. It has now improved. The photo does look as mine did except mine extended above lips and to chin plus painful sides of mouth. Just so sore and I hope you find solution. Xx

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You are dealing with so much and must be feeling terrible.

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Yes Talley,

suffering with terrible pain too at the moment (everywhere inflamed every joint) I have been feeling terrible just can’t get out of this flare these last few months , but we have all been there on here.

That’s why it’s good to talk to others who really understand what your going through.

Thanks

Mellisa 🌸

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Thanks so much for your reply and for the information.

It was above the lip line and sores in sides of mouth but has done the improving thing again. It will get bad again, think I need a stronger steriod mix with fungal cream this one is only 1% steriod. My lips are so sore it’s affected my eating. It’s also on my eyebrows and I’ve lost my eyebrow hair because of it , it’s also round my nose and on chin. Like scales.

This one is hydrocortisone acetate & Clotrimazole mix 2 times daily . It’s been 3weeks now and like I said it improves then next day it will flare up again.

Do you know how strong the % of hydrocortisone (Steriod) Canesten mix was for your treatment

Thanks

Mellisa 🌸

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Hi Melissa

It was called Clotrizone....Clotrimazole and Hydrocortisone Cream.

I% Clotrimazole and 1%Hydrocortisone...it took 10 days before clearing and appears badly left me withwhat appear as scarring from original infection. It is not nice.

Iam not able to take most medications and have Sjorens plus Fibromyalgia and respiratory problems plus joints and all the rest.

Please know you are in my thoughts xx

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Thanks Tally,

That’s exactly the same medication I’m on. It clears it up then it breaks out as soon as I stop been on it for 2 months now as just checked date.

So it does help 👍 but like Dr said It steriods shouldn’t be used on face long term. So can’t see the answer ,think a trip back to dermatology is def an idea.

Thanks for all your help.

Keep well Tally !

Mellisa 🌸

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I have had Sjogrens for some 30 years and 2 and 3 years ago I had lip ulcers that took months to heal. I had them biopsied with non specific results , and then I found a report that vitamin B helped. Since taking a vitamin B complex(there are a number of B vitamins) I have had no more problems.

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Thanks Robert I’ll try that !

maybe ask my Dr to do a vitamin level blood test on me.

As I know with my stomach issues I don’t cover all the vitamins I should.

Maybe I can still take vitamin B with a multivitamin tablet if I’m low on it ?

Mellisa 🌸

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B12 defiency is also a classic for us. I take low dose naltrexone and since taking I have less flare ups.

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Hi HollyHeski

I will do more research ! I never knew that .

Thankyou

Mellisa🌸

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I’ve had lips like yours this past six months - particularly when I was ill with a virus throughout the Scottish winter. They are much better now but I still have dark patches and a persistent sore - I think the dermatologist said this is some sort of Cheilitis. She is monitoring one deeper sore on lower lip. But I too have small spots of what I think might be Psoriasis although I’ve had eczema all my life - but it looks and feels different.

I’ve posted here recently with some pictures of this if you want to compare. Re the sun damaged issue - I have large freckles in places the sun doesn’t shine now but am none the wiser. I don’t touch hydrocortisone or steroid creams now having used them a lot when I was younger on my face. I think this has done more harm than good. All I use is Factor 50 and a nice facial perfume free moisturising cream morning and night. I’ve tried five DMARDs and am now off all. Main diagnosis Sjögren’s, Hashimoto’s and inflammatory arthritis/RA but this could be the Sjögren’s. Also got lots of pain, twitches and tremors around my body just now - mainly when I’m resting or when I first wake. I do personally suspect PsA because my cousin has it and I have nail, sacroiliac and neck problems. But not sure how to go about suggesting it to my doctors. Will see what the derm says about this in August

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Thanks Twitchtoes, Hope you get some relief soon.

I just wrote an update below to SusieW2 if you wanted to know, take care of yourself.

Mellisa 🌸

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I find so many symptoms are related to what I eat. If I stick to a fairly bland diet, not process foods, no gluten (mostly no grains at all), severely limit high-acid foods like tomatoes, peppers, citrus fruits, etc. I have less inflammation, less to no eczema and less lip sores. When I do cheat and have a taco, eat out or my lips crack & peel, I take a homeopathic remedy, Natrum Phos, which is just sodium phosphate. My lips feel better within a half hour. You can get it online at 1-800-homeopathy or call. It is not expensive. I take 4 tablets up to 4 times a day when I feel I need it and try to to take it when I don't so as not to build up a tolerance. Good luck and hope you feel better.

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Hi SusieW2

I’ve been feeling a bit worse.

Actually! I was told at last appointment my immune levels were very low 0.9 (then they accidentally gave me my infusion before checking my mthly bloods so prob lower now)and sodium phosphate was low too, so you could be right on that !! I will go and get my levels checked out again. I also agree when I eat certain food it irritates my stomach and causes severe pain, I lost 6 stone at one point and the only relief I had was only eating once a day so I could cope with hrs of cramping and severe pain only once a day, didn’t work so Gastro Consultant put me on a diet of liquid drinks 3 times daily ( fortisip) which was gluten free anyway.

They did do a biopsy for coeliac’s disease as both my daughters have it. No I didn’t have it, but still hear that a gluten free diet can help from people on this forum.

I do have a Gastro consultant as well as my vascular,my heart consultant, my urologist and others. They put it down to nerve issues in the stomach or something due to Sjögren’s or lupus?? Slow Bowel digestion ?? Etc etc They couldn't of been any better checking and doing tests but no answer.

I was put on 8saquets a day of laxido and a prucalipride every day for my bowels.

I’m having flares with the lupus at the moment ( organs ) Sjögren’s- everything is dry and sore , ulcers,sores of my lips . My RA or could be the Sjögren’s with the bad joint pain even whilst being on biological infusions and hydroxy 400mg a day, the stomach issues just don’t help.

May go back to the fortisip and slowly introduce certain foods to see what could be affecting me if anything.

I can go and get my bloods done whenever I want at hospital if I feel unwell, and my usual monthly bloods. So did them on Friday , see Dr on Tue I’ll ask her to check them through again.I try not to call the team unless it’s urgent or they always keep me in hospital with all my complications. When really, there is nothing they can really do for me.

Hopefully WCC has hopefully come up and we’ll see about the sodium phosphate so thanks for that info.

Will see what Dr says about it all.

Mellisa 🌸

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Hi Mellisa I have managed dry lips and ulcers in my mouth (I have Lupus) by keeping my lips moisturized at all times with a coating of vaseline on them and not letting them dry out. I found that if they dried out after eating or drinking I coated them straight away. I carry a lip moisturizer with me at all times. Get a reputable one from a health shop to carry with you. Some of the ones from supermarkets are designed to dry your lips out more so that you have to use them all the time. The cause of my dry mouth and lips was a lack of the vitamin B group so I started on a course from the health shop and kept on them for a few months. Our immune systems are compromised and lacking in vitamins and minerals. Maybe you could get an iron test to make sure. I have had no more problems with dry lips and ulcers as long as I keep them moisturized as above. Do not let them dry out. I coat them with vaseline when retiring for the night. Good luck.

Traveller.

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Thanks Tassa ,

Great advice !

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Hi Mellisa

I'm sorry you are suffering at present. Your lips look sore and I know how painful they feel like that.

When my lips get so sore, I use Elizabeth Arden lip balm protector. It is amazing. No side effects other than a moment of stinging on application. I use it until the lips are healed with new skin.

I suffer lip symptoms during the winter so I also wrap a scarf around my neck and bring it over my mouth. Biting winds are just that for my lips, bite and sore hellish..

Good luck.

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Hi Supul,

Seen Dr today bloods were mainly all bad especially WCC apart from my kidney and liver function tests ( which is good for me) she said the

steroid/ fungal cream has treated the edges for this Angular cheilitis, this dryness I’m left with is basically like you all say is just Sjögren’s so just need to find a decent cream. Steriod will now not help anymore.

So I’ve tried everything in the pharmacy. Dr said to try Aloe Vera cream. I will try the Elizabeth Arden lip balm, as I have a little pack I was bought for Christmas actually and has it in there, so Thankyou for that !

Mellisa 🌸

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No problem. I hope you get some relief soon. X

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Have you tried taking a probiotic every day, preferably morning with food for at least 4 wks, also carmex might help

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Hi Persiankiwi

I will try probiotic again that's a good idea. It helped with all my weight loss problems with my flare ups after last bad flare up.

Have lost 9lb this week so may help with the stomach cramps too. Still have some in date in my cupboard.

You have all been so wonderful thank you.

Mellisa 🌸

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