Jump to content

Do you want up to date information about Scleroderma? Check out our Medical pages at www.sclero.org for all your Scleroderma questions!


Super dry lips, also starting to get ulcers

  • Please log in to reply
6 replies to this topic

#1 isobelle44


    Senior Bronze Member

  • Members
  • PipPipPip
  • 45 posts

Posted 20 February 2009 - 04:34 PM

I was wondering if there is a connection to super dry lips and scleroderma? Why are they so dry and sticky like. Also I have started to get ulcers on my body, Anyone have that and if so what works to get rid of them. I have tried several creams but no luck so far.

Thank you,


#2 lizzie


    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 497 posts
  • Location: UK

Posted 20 February 2009 - 10:49 PM

Hi Sharon, I do think that the dry lips are due to scleroderma (with a bit of winter to make it worse!). Mine are dry all the time and crack and bleed if I'nm not careful. My strategies are:
Drink plenty of water
I think petroleum jelly works best for mositurising - I apply thick layer at night and carry a small tin of it in my bag and reapply during the day when I remember.
I never use 'ordinary' lipstick- find it very drying- now use moisturising lip glosses.
I try not to lick my lips! - it makes the dryness worse.
I don't have ulcers though. It might be a good idea to ask your primary care provider or rheumatologist for advice re these.

#3 smac0719


    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 377 posts
  • Location:Tampa, FL

Posted 21 February 2009 - 07:33 AM


I suffer from extreme dry lips as well. I have tried many lip balms including petroleum jelly and one of the new lip moisterizers on the market. Nothing seems to work very well, but the petroleum jelly works the best. I still wear lip gloss (for the color) because the sclero has darkened my lips and I'm still a little self conscious about it.

Lizzie made a good point about not licking your lips, but out of habit I do it many times a day. Hopefully something will come out with something that will relieve it.
I may have Scleroderma, but Scleroderma doesn't have me!

#4 Penny


    Silver Member

  • Bloggers
  • PipPipPipPip
  • 160 posts
  • Location:Suffolk, Virginia, USA

Posted 21 February 2009 - 08:10 PM

Hi, Sharon

I do not have any ulcers on my skin, but I have seen some posts discussing manuka honey as a treatment (topical, not ingested). Your best bet is to see your Dr first to make sure that it is Sclero related first, it is always better to be safe than sorry.

As for the dry lips, I definitely have that issue, with cracking, splitting and bleeding as a result and like the others will recommend using petroleum jelly at night and during the day as well. Most lipsticks (especially the long wear varieties) are very drying, so a lip gloss or tint is best. Just remember to replace them every three months to prevent bacterial growth in them.

Dry lips can be a sign of dry mouth and Sjogrens can sometimes like to come along for the autoimmune ride... have you been evaluated for this?

One thing that many do not realize is that toothpastes and mouthwashes can also dry your lips and mouth, so it is always a good idea to moisturize your lips before and after brushing your teeth and gargling, before to protect your lips and after to make sure that no residue from the toothpaste of mouthwash remains.

And... like the others have said... no lip licking! Your saliva dries relatively quickly and can actually aggravate the dryness.

Good luck and I hope this helps.


#5 isobelle44


    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 45 posts

Posted 22 February 2009 - 02:16 AM

Thank you for your comments. I have been diagnosed with generalized morphea and lichen sclerosis body kind for almost 2 years. I have it all over. I just came back from an appointment at Mayo and all of a sudden I'm noticing several different things. Like the super dry lips, my gums are sore, my tongue burns some and my skin on my arms feels warm from the inside out. Not to touch it warm, just feels warm. I have developed an ulcer under a breast and one on my back side. They both ooze stuff and pulls. I have recently been diagnosis with hypothyroid, which my doctor said usually doesn't follow morphea, but she didn't say it is connected. I'm wondering if this is still morphea or am I moving on to something else. I know you all can't tell me for certain, and my next appointment at Mayo is in June. It's a long wait. I can't just make another appointment cause its a long commute and my job, I worry about missing so much work, in such uncertain times. I'm a widow and count on my paycheck only. Do you think waiting till June is OK?

#6 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,706 posts
  • Location:in the Rocky Mountains of the USA

Posted 22 February 2009 - 08:04 AM

Hi Isobelle,

The others have made good suggestions for caring for the dry lips, especially Penny's recommendation on replacing whatever you use every three months in order to prevent bacterial contamination.

Have you looked at our info on Sjögrens? There's a thing called sicca syndrome which manifests as dryness - just about everywhere.

I just went through a bad patch with the mouth/lips/gums and one thing that did help almost immediately was making sure I was drinking plenty of water. I thought I was, but then realized I must be pretty badly dehydrated because my urine had turned quite dark.

There are some good products on the market for dental hygiene for those with dry mouths. I'll send you the names. They seem to be readily available here in the USA and not expensive.

The ulcers sound worrying. The literature on scleroderma mostly mentions ulcers on the fingers and toes. Could yours maybe be pressure sores? Is there a local doctor or clinic that is open outside normal working hours? I don't think I'd wait till June to get the ulcers looked at. They are harder to treat the longer you have them and if they get infected, you could be in real trouble.

Best wishes and warm but gentle hugs,
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network

#7 isobelle44


    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 45 posts

Posted 22 February 2009 - 01:38 PM

Thank you Jeanie I will try that. I do have my local general practitioner looking after my ulcers. There not at pressure points but seem to be where moisture builds. Under the breast, at first I thought maybe it was some kind of yeast, but its not. I have an appt with her tomorrow to see if the last treatment she was trying worked. They might be alittle better. I really do trust her, she is very sharp, so far she is the one that has found all my ailments, including the morphea. I'll tell her about the other things and mention the sicca. Maybe thats what it is. But I sure will try those products you mentioned Jeanie, and I have started with the vaseline today. Thank you everyone, Sharon