help! looking for input
Brief background info - I just stopped using Protopic (which worked
great but may cause lymphoma) about 2 wks ago. I had a huge, awful
mess on my hands, so I used the Desowen (topical steroid) for about
2 days, then stopped. I don’t want to use a topical steroid because
of the skin atrophy, acne rosacea, etc. that it causes.
I then decided to try getting a little sun. I am normally a sun
avoider, because I don’t want to prematurely age my skin, but
desperate times call for desperate measures. Lo and behold, a
little sun really reduces the inflammation, and I’m able to
moisturize, then aggressively exfoliate the flakes.
I decided to talk to an immunologist to see if there was a
substance, food, mold, whatever - that could be contributing to
this. I went to a really renowned and respected immunologist today,
and he said that there has been extensive research done, and it
isn’t food, mold, dander, etc. He did say he thought it might be
rosacea, not sebderm. He wants me to take high-dosage (60 mg) oral
prednisone for 5 days to get it calmed down, then have me come back
and talk about trying Metrogel, a rosacea treatment.
Problem is, I’m totally freaked by the idea of popping that much
oral steroid — or any oral steroid for that matter. Advice? Just
cancel my appt w/the Dr. next week and keep sunbathing?! Pop
the ‘roids? I’m frustrated.
December 28th, 2005 at 4:48 pm
i cant believe that Desowen is worse than a systemic
steriod.
December 29th, 2005 at 2:37 am
In my experience… if sunlight helps alleviate the redness and
inflammation of your skin, as it also does to me, then it’s sebderm.
What you may have, as I do, is underlying rosacea i.e. I can totally
clear up the sebderm with the power of the sun (using a lower factor
protection than I normally do - if I had no protection at all, I’d
be a beetroot) but even with no sebderm on my face, I have a slight
underlying pinkness to my cheeks, chin and nose.
Have never used oral steroids so no advice regarding that I’m
afraid.
December 30th, 2005 at 2:48 am
Prednisone is a strong oral steroid Tony Baloney says avoid it at all costs
December 30th, 2005 at 7:08 am
The immunologist probably wants to use them to get the inflammation down
so the metrogel/whatever has a chance to work properly as topical
treatments can seem to make the situation worse when your skin is really
bad.
I personally wouldn’t have a problem taking them. Particularly if it’s
going to be a one-off. If you do decide to go ahead, just make sure that
you make a note of the date you started them, how much you took and for
how long and if a doctor offers them to you again be sure to give them
that information.
Richard
December 31st, 2005 at 12:46 am
I’ve just been off prednisone for about a month (and that’s the
longest I’ve been off it since last year) and I hope to live my
whole life without ever having to take that crap again. I have
Crohn’s disease (another immunological problem) and when I flare up
in the abdominal area the first (and practically only thing) I get
at the hospital is prednisone. It gets the job done right pretty
quick, however, the catch is I start out with a large dose which I
have to ween myself off of, which goes on for months. Being on
prednisone for that long, even as I’m lowering the doses, results in
shitty side effects like insomnia and sleep disruption. And worst of
all is the unrelenting acne which obviously makes the sebderm
worse. I would chuckle to myself when I would hear people talk
about prednisone temporarily helping their skin. There probably is
some truth to that, but the key word is TEMPORARY. My problem is
I’ve been on prednisone for a long time, and then when I stop taking
it I have a Crohn’s flare up and I have to repeat the whole process
over again, and that much prednisone has destroyed my
face.
So be sure to ask your doctor how long you’ll be taking it and
if you have to ween yourself off it. Taking a large dose and then
stopping it real soon might be risky (at least that’s what I’m
told). I pray I don’t have to go back on it. For what its worth,
I’ve been taking flax, fish and borage pills, which may kinda sorta
be helping, and the apple cider vinegar treatment, which is
definately helping more than anything else. Whatever you do, make
sure you don’t have to be on steroids for a long time.
December 31st, 2005 at 7:07 am
That’s exactly what I’ve decided to do! No systemic steroid for me!
December 31st, 2005 at 5:16 pm
Thanks so much for everyone’s great input! I’ve decided that I just
can’t bring myself to take the steroid. I am keeping things under
control by using moisturizer and getting sun. The tan also helps
mask the redness. I think I’m going to try one of the green or blue
tinted lotions that the rosacea people use to mask the redness.
Anyone tried any of these?
January 1st, 2006 at 11:49 am
To the guy asking about prednisone…take it from me and don’t use the
prednisone, man.
Last year my dermatologist gave me 3 weeks-worth of prednisone for an
eye infection that wasn’t even inflammed. During week 3 I broke out
with tons of acne all over my jawline, chest and back. And I’m not
talking about little pimples but big, disgusting nodular acne. I had
to take accutane just to get rid of the prednisone-induced acne but
the accutane didn’t finish the job entirely and I suspect that it may
have caused the emergence of sebderm (since I didn’t have it prior to
the accutane). Currently I’m battling three facial conditions: light
redness that doesn’t seem to go away (although it doesn’t behave like
rosacea redness), stubborn acne on my jawline and sebderm.
Has anyone ever filed a malpractice lawsuit against a doc? I really
believe that the dermatologist screwed me over with that damn
prednisone.
E
January 2nd, 2006 at 1:51 am
I still believe that accutane may have something to do with my previous seb
derm condition. I used to take accutane for an acne condition when I was 18
for about a year. IT really made my whole face dry (chapped lips, nose
bleeds, and severe flaking of forehead, cheeck bones, and side burns). I
guessed becuase accutane screwed around with the sebaceous glands. But i
didnt get seb derm until 24 years old. But maybe that stuff was potent
enough to cause something. But i agree with you 100% about the prednisone.
STAY AWAY from it
Tony the Baloney the one and Only
January 2nd, 2006 at 8:27 am
very unlikely it was accutane.more likelt the effects
are wearing off and you are producing oil again, which
is happening to me. Seberm ISNT dryness.
January 2nd, 2006 at 6:36 pm
get the diagnosis from the bad doctor .
then see others to see if he really screwed up.dont
tell the doctors its for a lawsuit.
suprised u got prednisone for that since there
are special local steroids used for the eye.