Hi all, This may seem trivial but with my dry mouth the skin on lips has changed. Lipsticks do not stay on and the painted ones go blotchy.

[Cassiecat]

Is this happening to anyone else and if so is there a solution.

Regards,

Cassiecat

[Tassa]

Hi Cassiecat yes I have the same problem with very dry lips. i have solved it by keeping my lips continually moist. If they dry out they become sore and feel burnt. I keep smearing them with vaseline which helps. it is caused by a dry mouth and you may find that the dry mouth may improve if your lips are kept moist at all times. I have stopped wearing lipstick but you could try putting it over the vaseline. It is important to keep up keeping them moist. good luck.

Traveller.

[Cassiecat in reply to Tassa]

Hi Tassa,

Thank you for that information. While my lips feel dry at times, the skin of my bottom lip seems to have changed and the colour just more or less slides off and the brush lipsticks go all patchy.

It is a small issue compared to main problems of sjogren's but very annoying.

Regards,

Kay

[duffmama in reply to Cassiecat]

This seems classic Sjogren's lips - best 'fix' for me to repair all mentioned above is to keep constantly smeared with Aquaphor, recommended by my dermatologist, and which works for more extended periods than anything else I'd tried. Aquaphor is water-based, and similar to Vaseline, yet unlike because Vaseline petroleum-based. Aquaphor is commonly used by Dermatologists in States for healing some types of incisions and skin issues, etc. Had been using Vitamin E oil UNDER coat of Vit. E cream, UNDER lipstick (putting on lip color had become quite a PROJECT). I keep one tube on my vanity and one tube in my purse - can't live without it. Get larger tubes - the new pocket-purse lipstick-size tube is not going to cut it for Sjogren's Ladies!

[Hidden in reply to duffmama]

Duffmama, are you here in Australia? I have not heard of Aquaphor. Sounds really good. My latest products for eyes/mouth are Hylo Forte eye drops which are very effective, and Xylimelts mouth lozenges at night. One tablet adheres to a back tooth and very slowly dissolves over several hours. Moisture! Cheers & a Happy 2019 to you.

[duffmama in reply to Hidden]

Hi, Salsal - I am in the States, and I am hoping that you might have it in Australia as well because it is such a great product. Maybe a search will turn it up! Good luck.

[duffmama in reply to duffmama]

Salsal - A quick search indicates you may be able to get it in Aus - it just may not be as well known since it's from here. Hope you can find it, or perhaps a product that is very similar.

[Hidden in reply to duffmama]

Thanks - I'll certainly check it out.

[Hidden]

I'm afraid my lipstick days are over. Only use it for photos! I use a slightly coloured lip gloss, or a tinted Blistex sun block stick, but the best preventer is chewing Extra strawberry (my tongue can't do mint of any kind!) gum. Unfortunately - artificial sweetener in it, but it sure helps make saliva, and with my teeth breaking regularly now, they need every drop to stay in my head!

All the best.

[Cassiecat in reply to Hidden]

Hi Salsal,

Thank you for that information, shall try the lipgloss. As regards the gum,I use a xylitol, sugar-free gum from the health shop which helps protect my teeth. Like you, any mint burns my mouth now so get the fruit flavoured. Thought you might be interested in that.

Regards.,

Kay

[duffmama in reply to Hidden]

This seems classic Sjogren's lips - best 'fix' for me to repair all mentioned above is to keep constantly smeared with Aquaphor, recommended by my dermatologist, and which works for more extended periods than anything else I'd tried. Aquaphor is water-based, and similar to Vaseline, yet unlike because Vaseline petroleum-based. Aquaphor is commonly used by Dermatologists in States for healing some types of incisions and skin issues, etc. Had been using Vitamin E oil UNDER coat of Vit. E cream, UNDER lipstick (putting on lip color had become quite a PROJECT). I keep one tube on my vanity and one tube in my purse - can't live without it. Get larger tubes - the new pocket-purse lipstick-size tube is not going to cut it for Sjogren's Ladies!

Reply

[ronel]

Hi cassie, unfortunately because part of sjogrens is that yr body starts to dry out (this is how my doctor described it), u will find as time goes by something new might start up b4 we can say "What Now?". Your skin will dry out. Keep drinking lots of water an moisturise every chance u get. For your lips, the worst thing u can do is lick them, I also don't use lipstick anymore, lip gloss and lip balm are in every nook an cranny in my home, car and handbags. My favourite is palmers coco butter lip balm. Good luck my darling. Remember "don't lick yr lips".

[Cassiecat in reply to ronel]

Hi Ronel,

Thanks for that information, shall try the lip gloss.

Regards,

Kay

[DJEUSA]

I have not been able to use lipstick since 1998 - it causes my lips to peel if I use it. I have had trouble with all make up as my skin is dry and gets itchy - hardly seems worth the trouble to use it. I also use Ceptaphyl body wash to bathe and Ceptaphyl creme/lotion. Blistex makes a Daily Condition Treatment ( DCT ) with a SPF 10 in it that works for lips which makes them look moist and the natural color looks like lipstick is on. They also make one called Medex which has menthol in it and seems more harsh. Both Blistex products have Vaseline in them. I use Biotene Toothpaste, mouth Gel, and Mouth Spray ( gentle mint flavor ). Biotene mouth wash seems to irritate my mouth. So many oddities which make no sense - but they are all happening. I have Sjogrens Primary DX, Raynauds, Fibromyalgia, OA, RA, and Photosentitivity to the Sun and Flourescent lighting and my body temp is normally 97.6 - a degree below normal and I have some problems regulating/adjusting my internal body temp especially in extreme cold or hot conditions - I just don't adjust accordingly - like my internal thermostat is broken. I think it is from the Raynauds but Doc has suggested Vasovagel ( Sp. ? ) possibility. You are not alone in your symptoms which come and go as they please. I wish you well in finding products and Meds that give you some relief and comfort. Hope this helps in some way - Take Care - Diane ( From the USA )

[Cassiecat in reply to DJEUSA]

Hi Djeusa,

Thank you for that information. Like you I use all the Biotene porducts and chew xylitol sugarless gum to help protect the teeth. Its all trial and error.

Regards,

Cassiecat.

[Travelor in reply to DJEUSA]

Hi Cassiecat

I was diagnoised in April of 2015 with Sjogrens Syndrome through my labs i had the lip biopsy for (ss) in June the results where negative for (ss) however the Doctor stated since i was on Palquenile It could be a false negative for (ss) I have all the symptoms of (ss) my lips are try and cracked I live in the south of USA sun about 11 months out of the year. I to am finding things to try to see what works haven't had any luck but the suggestions I read here I will try for myself.

To Diane (DJEUSA) I am stunned to find out that you have everything I have recently been diagnosed with. I am in South Florida USA I am trying to work throught this maze of Doctors/Specialists and medications. I am having a real hard time with rashes and hives the doctors are telling me Im alergic to some medications I have been given I think it is something else. My Rheumatologist has diagnoised me with RA, Lupus, Raynauds and Sjogrens.

I was first put on Plaquenil broke out after 3 months taken off then we tried Imuran broke out taken off after 2 weeks now the Doctors is asking me to take Cellcept I dont know I read severe side affects that are scary. I see a eye specialist to treat the SS, Reumatologist, PCP, Nephrologist for my polycysistic kidney diease (heredity) and a Hematologist/Oncologist for MGUS a blood diease also.

DianeW South Florida USA

[duffmama in reply to DJEUSA]

This seems classic Sjogren's lips - best 'fix' for me to repair all mentioned above is to keep constantly smeared with Aquaphor, recommended by my dermatologist, and which works for more extended periods than anything else I'd tried. Aquaphor is water-based, and similar to Vaseline, yet unlike because Vaseline petroleum-based. Aquaphor is commonly used by Dermatologists in States for healing some types of incisions and skin issues, etc. Had been using Vitamin E oil UNDER coat of Vit. E cream, UNDER lipstick (putting on lip color had become quite a PROJECT). I keep one tube on my vanity and one tube in my purse - can't live without it. Get larger tubes - the new pocket-purse lipstick-size tube is not going to cut it for Sjogren's Ladies!

Reply

[TV123]

Hey, Thank YOU for this post. Several years ago I had to stop wearing lip stick and lip liners and had no idea what I was "doing wrong." I had the same issues you describe. I, too, switched to chap stick, moisturizing a gazillion times per day and lip gloss for pictures.

Sorry that you all have had these experiences, too, but so happy to know I'm not the only one!!!!

[duffmama in reply to TV123]

This seems classic Sjogren's lips - best 'fix' for me to repair all mentioned above is to keep constantly smeared with Aquaphor, recommended by my dermatologist, and which works for more extended periods than anything else I'd tried. Aquaphor is water-based, and similar to Vaseline, yet unlike because Vaseline petroleum-based. Aquaphor is commonly used by Dermatologists in States for healing some types of incisions and skin issues, etc. Had been using Vitamin E oil UNDER coat of Vit. E cream, UNDER lipstick (putting on lip color had become quite a PROJECT). I keep one tube on my vanity and one tube in my purse - can't live without it. Get larger tubes - the new pocket-purse lipstick-size tube is not going to cut it for Sjogren's Ladies!

Reply

[willybilly]

Not trivial at all and I have the same problem, no longer use lipstick.My problem is that my mouth is always "scummy" from the dry mouth and the gunk I need to gum in my denture, tho I am gradually doing that less often. I am constantly wiping my mouth until it can become quite sore. also made worse by the chewing gum which is the only thing I have found to relieve the dry mouth a little. It all sounds trivial but trivial is AIN'T. Good luck finding help.

[Cassiecat in reply to willybilly]

Hi Willybilly,

Was actually surprised to find that others had similar problems, but thats Sjogrens, varied conditions. Have found chewing sugar-free xylotil gum helps my dry mouth by producing saliva.

I have to get the fruit flavoured as mints burn my mouth, the xylitol also helps protect teeth and the gum isn't tacky. That's no help regarding lipstick and have now have quite a few in the drawer so shall probably just use slightly tinted lip balm which has been suggested.

Thanks for your help.

[threesons6237 in reply to Cassiecat]

I agree. Chewing sugar free gum helps. Must get some xylitol gum. I have all the symptoms... dry eyes (no moisture at all) the only eye drops that are of any use to me are the most expensive.

Cant slice onions anymore unless I wear goggles.

Walking down the street is murder!! Traffic fumes and smokers cause me such discomfort! By rights I should wear a gas mask! That would be a sight, right! I do cover my mouth and nose with a handkerchief if the fumes are very intense.

I have also noticed extreme hair loss. Not happy!! To make my face feel more comfortable I apply any face cream or oils I can get my hands on and apply them numerous times a day.

Does anyone else have these problems?