Telengecstasias on face - are these Sjogrens related Rosacea perhaps?

[MAT51]

I was diagnosed with Rosacea by a very abrupt  and dismissive dermatologist a few years ago - and given a prescription for treatment but my GP didn't think I should bother with it as no real flushing - just small slightly itchy lumps and bumps, that came and went. But the past year I've noticed that I have increasing red/pink and brown spots of burst capillaries dotted around my very fair face. My chin goes red in the cold and my nose has a permanent small bump. Otherwise I don't blush or flush much. I have new bright red telengecstasias appearing on my cheeks - small but very noticeable, like little cuts. I think the cold has triggered these. My eyes are twitching a lot, extremely photo sensitive and extra dry, despite frequent drops. I have recently been diagnosed with MGD.

Does this sound like Rosacea and if so is this a common condition to have with Sjogren's? - should I start treatment or might it cause more problems? Others experiences of Rosacea with Sjogrens would be useful to learn of. I'm +ANA and lip biopsy positive i.e seronegative SJS. I also have pompholyx on my hands just now and have had eczema on and off all my life.

[KatyB]

This is a late reply--but I am starting to suspect that I have rosacea as well.  My face started burning/tingling several months ago and I thought it was peripheral neuropathy (as I was having tingling/numbness in my hands & arms as well).  No real rash at that time, but recently I am seeing redness and some bumps. It often feels like I have a sunburn. I am fair skinned and have always blushed easily.  I am wondering if this is neurogenic rosacea...in which case maybe the gabapentin I just started will help with the symptoms??  Have not yet seen a dermatologist.  Have not even been officially diagnosed with Sjogren's yet! Sigh.

[eye2dry]

I have had rosacea since my late 30's. I started out with Metrogel, now I am using
name brand Finacea.

I had mostly the flushing, some bumpiness, no stinging at all.

I have Irish, English, German ancestory.......strike against me.

I like(d) the sun and spicy foods and caffeine....strike 2 against me.


I have the tangelectasis on my cheeks and nose.....I have them lasered off
by my derm. Men can get a W.C. Fields type nose from rosacea that is called
rhinophyma (misspelled I think)


The surface blood vessels dilate very easily and after years of this, they become
dilated longer and longer......well, till they just do not contract/close/shrink
like they should.

Online somewhere you'll find lists of all the things you love that they will
suggest you stay away from to help keep it from flaring.

Yes, some meds will cause flushing as well.

shelly

[Sharon]

I have also been getting various skin issues like you mentioned plus other strange
skin phenomena since the SJS began. No doctor seems interested in properly diagnosing
any of it except for the melanoma I happened to discover on my own, thankfully in time.
Many of the redness skin issues seem related to skin inflammation in some way.

Shelly- Did the laser treatment leave any marks? I get these little red dots here and there I'd love to get
rid of. Do you know if the laser would help with those as well?

[irish]

I know nothing about rosacea but my concern is that when someone has autoimmune disease there could be a chance that what looks like rosacea could possibly be a skin symptom of one of the autoimmune issues.

The skin is really hard to diagnose at times and I often wonder if those of us with autoimmune issues and skin problems are having biopsies of the skin lesions as often as we should. Just a thought. Good luck to you all. Irish

[Sharon]

I agree with irish....
I'm quite certain our conditions are related to AI conditions.

[Carolina]

I have the red rash, that flushes, on my forehead and cheeks, and other rashes that just sit there, on my upper arms and neck.

Also the capillaries

My dermatologist offered laser treatment for the capillaries

He said the rash it sun damage and gave me Retin-A which really didn't work after one month.

I just put makeup over it when I got out, and wish I didn't have this, but I do.

Hugs,  Elaine

[Sharon]

Elaine- What helps those rashes for me is staying out of the sun. Retin A actually makes you more sensitive to the sun and causes me irritation regardless.

[eye2dry]

Yes, if you've never been told by a derm that it is rosacea....don't assume.

There is another terrible autoimmune disease called vasculitis and one of its
symptoms is a rash.

A person we know had terrible gut pain, in and out of hospital,
biopsy taken of small intestine. middle of night ER trips. Eventually,
It was his mother who was putting on his slipper, noticed "a rash"
then the drs. knew what direction to go for diagnosis

Who knew a rash on the foot was related to vasculitis of the small intestine.
He did end up losing 7 inches of his small intestine.

Never assume....

shelly

[MAT51]

Thanks very much for all your replies. I certainly don't assume although I'm surpounded by medics who seem to presume!

I've also noticed that my SFN flares after time spent in the sunshine ( with shades on) and yet the red spots on my face and legs tend to flare more when it's cold. I think I may well have some sort of vasculitis but if I do it's been coming and going for years now and I've been on Cellcept for 5 months now so in theory this should be helping. Maybe my symptoms would be even worse if I wasn't on it though.

[irish]

It would be nice if some doc had done a biopsy to see if you do have vasculitis. There is vasculitis in the smaller vessels and then can also have in the larger vessels. The larger vessel vasculitis is what can affect out organs such as kidneys and liver, etc.

I don't know if a biopsy now when on cellcept would show a trustworthy result. Would have to have doc check with the lab maybe.  Irish

[MAT51]

Thanks Irish. I never trust any test results if they have been run when on immunesuppresant or steroid medication - learnt this the hard way. I think some forms of Vasculitis just wax and wane as part of the main disease so I would trust my new rheumy to determine this but also I think I'm being seen by a vascular medic who does the nailfold test so perhaps he will be able to assess as well as the rheum.

[trc1962]

Derm said quite a few years ago I probably had rosacea, but I don't get bumps at all, just very bad flushing that goes even down my chest. The topical treatments the derms gave me were just very harsh and made things much worse. I do much better if I watch my diet and moisturize with Clinique (and nothing else). I do know it pretty much goes away when I am on prednisone, so it is clearly inflammation related. Wishing you well.

[MAT51]

Thanks. Yours does sound very much like Rosacea. Only thing is that it usually gets much worse on steroids so most doctors have told me. I did have several huge bite-like spots that were slightly itchy once while on stepods but never the flushing. Mine doesn't seem to get worse with spicy foods or sunlight. But I guess it affects us all differently.

[Tharrell]

Hi MAT! I have been following this thread with great interest. My dermatologist also told me I have rosacea right of the start even though I never flush and my face doesn't look anything like it. The creams to treat rosacea make me itch like crazy! I do have telangectasia on my face and neck. No bumbs anywhere. My sister get's these terrible facial ulcers that her dermatologist said was rosacea. Same issue, the creams make her itch like crazy! Her dermatologist won't prescribe steroid cream saying it will make the condition worse! Yet it is the only thing that clears up her face! Why can't doctors listen to their patients?