Sounds like you have a severe and/or complicated case. It would certainly
be best to find out whether you in fact have rosacea vs. porphyria, SLE,
etc. as the therapies are markedly different. If it is rosacea, it sounds
like your case is complicated and difficult to treat. If it is rosacea, it
would probably be good to determine if your problem is primarily
inflammatory or secondary to neovascularization (excessive growth or
dysfunction of the arteries and arterioles of the face) or a combination of
both. Inflammatory problems can respond temporarily to steroids, though in
the long run these will make your skin worse by thinning the dermal layers
(therefore further exposing the blood vessels underneath) as well as
contributing to an autonomic type of dysfunction since there will be rebound
vasodilation after the steroid wears off. If the problem is essentially
neovascularization, photoderm can help. By "zapping" these vessels you will
also decrease edema secondary to "leaky vessels" and inflammation. If your
problem is really autonomic (extreme blushing / flushing reflex), ETS may be
of value if beta-blockers don't help.
It sounds like you have been through a lot of treatments. I wonder if you,
like myself when I was first diagnosed, are using too many things on the
skin, are not being very gentle with a cleansing routine and protecting your
skin against the elements. I don't know what your routine is. Feel free to
post it to the board. I'm sure we would be happy to give you some feedback.
I don't know that I have any specific advice for you, except to find an
excellent dermatologist, one with experience in rosacea and vascular
disorders of the face and not biased against photoderm. I was also in SF
when I was first diagnosed, but had no great luck with dermatologists there.
I saw a dermatologist through the USF clinic who was not bad, but I cannot
remember her name.
I sympathize with the emotional turmoil you seem to be experiencing. I had
a very bad go of it when I first got the disease. For me, the emotional
struggles taught me a lot and I've grown through the process. Maybe a
therapist can help you with some of the issues.
I wish you the great luck and pray that a proper diagnosis is made and an
effective therapy is found.
----- Original Message -----
Sent: Friday, December 31, 1999 5:56 AM
Subject: [rosacea] Antimalarials/ Misc. Questions- Please help Dr. Sy
> Hi Everyone,
> I hope you are all doing well and have a very happy and healthy new
> I am getting pretty desperate (hence yesterday's idea to write the Pres)
> to get my life back. My severe burning pain, throbbing and swelling
> continue to worsen. My lab tests for porphyria have again been lost,
> etc., etc. Anyway, I though I'd ask a few questions of this wonderful
> group and our dedicated Dr. Sy. I just don't know what to do, and any
> suggestins would be greatly appreciated.
> 1) Red hot, burning facial skin around the clock- Is there ANYTHING
> medically to stop or counteract this constant searing hot facial skin?
> (I have the house at 65, I eat sorbet and ice chips, I moisturize. I
> rinse with cool water, but the relief only lasts while I'm splashing the
> water on. I've tried antibiotics, topicals, antihistamines,
> antidepressants, beta blockers, histamine blockers, antiinflammatories,
> depo madrel injection, etc. Doctors have told me repeatedly that
> accutane and photoderm won't help. They even said ETS was not for me.
> Now I have to go to USF for a biopsy next Friday, even though almost all
> tests have been normal. [One borderline ANA 1:80, but doctors no longer
> fel it is autoimmune / Positive or HLA-B27/ IgE of 858/ High
> uroporphyrin levels in one test.]
> 2) Antimalarials- Have they helped anyone with their burning pain and
> 3) Any new ways to stop leaking lymph, cytokines, prostaglandins, etc.?
> 4) Bad Photosensitivity- This definitely means you can't have photoderm?
> 5) Porphyria- Can you have photoderm with porphyria?
> 6) MVPS- Has anyone discovered that they have dysautonomia/ mitral valve
> prolapse syndrome?
> 7) Rhinophyma- Has anyone been able to stop this from progressing?
> 8) Candida- Anyone told that there is a link between Candida and
> 9) Underlying Cause- Has anyone learned the underlying cause that is
> makng the rosacea so bad? Autonomic dysfunction, thermoregulatory dysf.,
> hyperactive sympathetic nervous system, etc. have been mentioned as
> possibilities. Does anyone have a doctor who is investigating these
> possibilities? What kind(s) of doctor(s) would look into this?
> Sorry to have gone on and on, as usual.
> Thank goodness I have you all. Thank you.
> Happy 2000!
> -- 20 megs of disk space in your group's Document Vault
> -- http://www.egroups.com/docvault/rosacea-support/?m=1