Pics...Rosacea or Lupus Rash?

[christiemissouri]

Hello, I am new to this board and cross-posting since I have pics to view and get help with. I have been battling the possible diagnosis of Rosacea for about 12 years, just shortly after my first child was born. My mother and grandfather both have Rosacea, but neither had the extreme flushing and blister like papules I have...they have more of the vascular looking Rosacea where the blood vessels are very obvious. I had a biopsy done for Discoid Lupus because I have the typical butterfly rash, and it was negative, but my ANA was very elavated which led them to think it was more auto-immune/mixed-connective tissue disorder and could be Systemic Lupus. The Rheumatologist is reluctant to give a formal diagnosis however.

It wasn't until just this last 3 months that the flushing had become so bad it caused these horrible blisters/papules. I have a pretty good photo I am attaching a link to on my site in order to get ANY help. I saw my primary first who thought Metrogel would be the answer and had NO improvement, actually it seemed to worsen so she then had me try Elidel to no avail and so then she had me take 40mg of Prednisone which I have on hand for any possible Lupus flare and for those of you who know about Prednisone, it masks the real problem, but WOW does it work and work fast. After those were unsuccessful, I went to the Dermatologist who did the Lupus biopsy last year and he prescribed DesOwen cream with Sulfur as a compound and thought it was very likely Rosacea now and the mixed connective tissue disorder probably complicates matters because they can be vascular in nature. It's not a good idea to take Prednisone on a regular basis due to it's major side-effects with long term use, but I am so frustrated as to what will work and not sure what's worth trying.

Can anyone take a look at my link to my pics and see what you think? I am attaching one that is of me just prior to 3 mos ago when the big flushing and blisters started. You can see that I naturally had a very rosy glow, but NO obvious signs unless close up you could the the blood vessel lines clearly. Thank you in advance for any help you can offer!
Christie
http://masterpieceschnauzers.com/rosaceaphotos.html

(edited-redhotoz, so link can be clicked on)

[Froggirl]

Hi Christie

Welcome :), wow with all that it must have been a frustrating last few years for you.

I couldn't get the link you posted to work. Even when I cut and pasted the address into explorer it didn't come up.

Cheers

Kate

[Twickle Purple]

Hi Christie,

Skin rashes can mean so many different things. I am hesitant to offer an opinion here. I also had increased ANA levels, but I do not have lupus. Do you have a teaching/university hospital around where you are? If so, perhaps you could pursue another opinion. It is in situations like this, where a doctor is uncertain, and a life altering/shortening illness is a possibility that we must become more assertive in our quest for answers. I do hope that you find out what is causing this and can start the healing journey.

I have pasted your link in here, in case anyone else has trouble accessing it.

http://masterpieceschnauzers.com/rosaceaphotos.html

Best wishes,
Twickle Purple

[Maverick001]

christie,sorry to hear you are having a rough time at the moment, the whole skin rash diagnosis can be v testing on the patience and nerves as so many things look like each other! In my experience the louder you shout the more you will be heard,so persue this diagnosis until you get some answers. Have you tried any antihistamines? Could be something like urticaria/papular urticaria which can cause flushing/numerous fluid filled blisters! Not sure on the ana bit though as thats gettin to technical 4me.

[claudia]

Hi Christie,

I hope you're getting adequate answers to your situation. The redness looks like rosacea but your description of 200+ blister like eruptions that have clear liquid in them makes me think that possibly you have more than one thing happening...i.e. rosacea + something else. I think it's almost like an allergic response...hives, etc. Your mild rosacea may have set the stage for your skin to be very sensitive to other things too. I think you'd benefit from finding a teaching hospital in your area that has a dermatology dept. Here in Oregon that's Oregon Health Sciences Center (they've got a website). If nothing else, they could direct you to the best hospital-dermatology dept. in your area. You need a real specialist...not just the regular dermatologist that thinks they know how to treat rosacea!!!

Good luck and keep us posted.

CV

[Daniel]

I take 5 mg of oxycontin twice daily for pain control, with Darvocet for breakthrough pain. I have been using more of the darvocet recently as my neuropathic pain has been steadily growing. I did not really know anything about darvocet, but have been reading up on it recently. I am not happy with the large amount of acetaminophen in it.

[jennfran]

Christie,

Have you had an SLE or any other specific blood test for Lupus, or only the ANA? Also how was your ESR and CRP blood tests?

Your skin rash to me looks like rosacea and I also have gotten the white bubble acne on my skin, just started. My Dr. told me it is a form of acne but it is oil glands plugged up and that is what yours looks like.

Let me know about the bloodwork. I am sorry you are going through a hard time right now..Hugzzz..Jenn