[Rhapsody]

I had my yearly check-up with my Dermatologist today and I was told that I now have Rosacea & Ocular Rosacea.... (my translation) just another issue to add to my already long list of medical problems.

Oh well, what can one do, but to move forward and deal with life.... and with that I would like to ask if any one here at PC has had this problem and if YES - please let me know how it has effected your life and how you personally deal with it.

I am asking, for while my doctor is great and she explained everything to me and suggested that I follow up with a few of my other doctors.... I still would like the personal touch of INFO from someone that has actually lived with the issues of Rosacea.

and..... while doctors are book trained, they don't always know all there is to know about the problem / disease.

Thanks....
LoVe,
Rhapsody -

[Rhapsody]

ANY ONE ? ? ? ? ? ? ?

[Rhapsody]

Oh well, I guess I will just have to leave it up to the doctors - Big Sigh!!!

I have been doing some research on Rosacea and Lupus that is often wrongly diagnosed as Rosacea, and that which my Dermatologist told me to follow up with my Rheumy doctor to be tested for (and recheck my RA)..... I am just so darn tired of it all and slowly getting depressed again with all the worries that I must face having an Autoimmune Disease, possibly 2 or 3 now.

BIG SIGH!! BIG SIGH!! BIG SIGH!!

....... When does it ever end? - or DOES IT?

LoVe,
Rhapsody -

... going in for more blood work this week.

[January]

Rhap,

I have several autoimmune diseases and I do know how you feel in waiting for the next one to happen...

It seems you start out with one and every six months to a year, the Drs dx you with yet another.

I don't have roseacea, but I know someone who did. My ex, in fact. He had laser treatments. They were painful and made his face more red in the short term. In the long term, however, the results were fanstastic. I highly recommend the laser treatment.

I wish you the very best with this and your other illnesses. It seems overwhelming, but try to take it just one day at a time.

Hugs,

Jan

[Rhapsody]

Thanks for the reply...... I am hanging in there best I can, maybe someone can tie another knot for me to hang on tighter with - lol.

LoVe,
Rhapsody -

P.S.
If anyone has LUPUS out there I would love to talk with YOU.

[Rhapsody]

Wondering....... Rosacea (or) Lupus
I have been doing some research on Rosacea and Lupus, and Lupus is often wrongly diagnosed as Rosacea, and that which my Dermatologist told me to follow up with my Rheumy doctor to be tested for - Lupus.

Here are my SYMPTOMS – (started around May 2006)

March 25, 2006

While in Texarkana Arkansas (March 15 to April 10, 2006) - I developed a cold around March 25 with flu like symptoms that caused coughing with yellow phlegm, no fever.

Symptoms in order of occurrence: (May 2006 to Jan 2007)

1.) Couching w/ thick yellow phlegm (daily, hourly, day & night)
2.) Head/Skull PAIN (sharp, stabbing) – w/ Migraines
3.) Neck PAIN (back of neck)
4.) PAIN in ears, eyes, face and jaw
5.) Head, facial & hand numbness
6.) Server Fatigue (quality of daily living has been lost)
7.) Chest PAIN w/ pressure & flutters (worse than normal)
8.) Watery eyes w/ burning sensation and blurred vision
9.) Ringing in ear (off and on)
10.) Nausea (sick to stomach a lot)
11.) Heart Burn, food regurgitation, swallowing difficulties
12.) Sinus Difficulties (pain, congestion, stuffy)
13.) COLD - seems like I am always freezing
14.) Insomnia (has increased due to head pain)
15.) Frequent Urination w/ inner pain & discomfort (large & small amounts)
16.) Mental Confusion w/ short term memory loss
17.) Strange sound behind / around eyes and nose – (electrical white noise)
18.) Depressed feeling, withdrawn, irritable, moody
19.) Flat Blotchy Rash on Face & Body w/ fatigue, migraines, and nausea

Symptoms I live with on daily / weekly basis – for two years or more

1.) Face and Neck swelling
2.) Ears swelling (alternates)
3.) Chest pain & flutters w/ pressure
4.) Hearing Impairment
5.) Daily & Weekly Fatigue
6.) Heat & Sun Sensitivity (body & eyes) – w/ nausea & fatigue
7.) Flu like Symptoms (on bad days)

* * * * * * * * * *

[Perna]

"Lupus erythematosus differs from rosacea in onset, flushing history, distribution, and general medical history. Lupus presents acutely with a livid color with sharp margination. Unlike rosacea, flushing and papules are usually not present. Also, antinuclear antibody evaluation can help differentiate lupus from rosacea. Lupus would be suspected with an elevated titer level."

Good comparisons with other diseases at the bottom, Rhap:

http://www.nursingcenter.com/prodev/...asp?tid=601568

I'd be careful about the "lupus" you're reading about; think you have http://dermnetnz.org/immune/cutaneous-lupus.html "cutaneous" not "systemic" which I think is what you've been looking under. Don't borrow trouble, systemic lupus is very different from the "skin" version.

[Rhapsody]

Thanks for the great INFO...... for I was not aware that there are two kinds of LUPUS.

... and YES, I am not looking for any trouble in self diagnosing my rash - that is why I am letting my Rheumy Doctor take care of all of this, per the advice of my Dermatologist.... I saw her on Monday and she wants me to follow up with my Rheumatologist for a Full Autoimmune Blood Work-up to rule out Systemic Lupus Erythematosus.... I already have RA (10 yrs) and she thinks that it is possible that I might always have developed Lupus, due to the full body rash that I have had off and on now for 2-3 months and now lately it will not go away and she has no other explanation for why it is present.

I am asking about the Lupus end of this deal to try to educate myself more on Autoimmune Diseases so the doctors will finally have to do what they need to either confirm or rule out the presence of Lupus, for I have been trying to get them to test me for different Autoimmune Diseases over the last few year, due to other symptoms that I have been experiencing for around 3 years.

I would rather know up front if I have any thing else and treat it correctly, than to let it go - and now I actually have the concern of another Doctor to back up my words that some thing is not right and for needing more blood work done, if nothing else another ANA (last test 1997).

P.S. .... I probably have Rosacea as well -

Thanks again...
LoVe,
Rhapsody -

[January]

(((((((((( Rhap ))))))))))

I do so understand how hard it is to wait to see if and when a dx of lupus is made. I have postive ANA and a host of autoimmune disorders, but so far, the Dr. hasn't dx'd lupus. It's scary and though this might not be of much use, I really do understand.

Hugs,

Jan

[Rhapsody]

MAN!! ole MAN!!! - ole MAN!! (OMG) (OMG) (OMG)

I had such a flare up last night of this Rosacea (well actually two flares) and I thought I was going to jump right out of my skin.... my face was getting so tight, itching and burning, that it felt like some one had put a book full of matches to my face. I HATED THAT FEELING soooooooooo MUCH - Yuck.

Is this what I have to look forward to..... a face that burns me alive due to Rosacea and a body that leaves me in such pain that I can no longer function? - what else waits at my next doctor apt.... I wonder.

Life is becoming to difficult to deal with -


LoVe,
Rhapsody -

[Perna]

Ouch! Little hard to sleep (understatement of the year award). I have leg itching from allergies sometimes when I'm trying to get to sleep and can't bear that; tight, burning face does not sound pleasant.

(((Rhapsody)))

[Peanuts]

I have mild Rosacea and while I have some of the tell tale red lines on my eye lids .. I haven't been diagnosed with ocular rosacea at all. I use a prescription gel, MetroGel, every evening before bed. I only use mild cleanser on my face, I don't wear any make up, I don't use astrigents, I use clinique lotion on my face. I also stay out of direct sun, I wear a hat, shades and sun screen.

According to my dermatologist, the key is to maintain - because there is no cure for Rosacea, you just have to "manage" it. So I keep up with the Metrogel and I watch triggers that cause facial flushing. For example, drinking alcohol will cause my face to flush, especially beer. Being out in the extreme cold will cause my face to flush - so I bundle up and wrap a scarf around my face to protect it from the wind.

Stress causes me to flush also - and that is something that I have a very tough time controlling. I can feel my face flush and feel swollen and uncomfortable. Sometimes I put a cool cloth on my face to calm the flushing.

My case is very mild and it hardly disrupts my everyday life at all. I put gel on my face at night and protect my face frm weather extremes .. other than that I am doing fine with Rosacea.

I think once you get your rosacea under control, you will be able to maintain with fewer and fewer flareups. Did your doctor prescribe metrogel for you ??

Good luck,
Peanuts

[Rhapsody]

</font><blockquote><div id="quote"><font class="small">Quote:</font>
Peanuts said:
I have mild Rosacea and while I have some of the tell tale red lines on my eye lids .. I haven't been diagnosed with ocular rosacea at all. I use a prescription gel, MetroGel, every evening before bed. I only use mild cleanser on my face, I don't wear any make up, I don't use astrigents, I use clinique lotion on my face. I also stay out of direct sun, I wear a hat, shades and sun screen.

According to my dermatologist, the key is to maintain - because there is no cure for Rosacea, you just have to "manage" it.

I think once you get your rosacea under control, you will be able to maintain with fewer and fewer flareups. Did your doctor prescribe metrogel for you ??

Good luck,
Peanuts

</div></font></blockquote><font class="post">

YES...... I have the Metrogel and have been using it for about 2 weeks now, and I do all the things that you listed in the first part of your post...... I rarely wear make-up any more and I only use Cetaphil (cleanser & lotion w/ SPF 15) on my face, as perscribed by my Dermatologist.

I guess only time will tell................. as YOU have said.

I will be able to greatly reduce "The Stress" in my life come this June.... please keep fingers crossed.

Thanks...
LoVe,
Rhapsody -