Hello! I hope everyone has a peaceful Easter, tomorrow.
I am looking for any advice or info on facial flushing. When all of my autoimmune troubles began about a year ago, I suddenly started flushing on my upper chest and face. It started out being bright red and just blotchy, but it has gotten severe now. It masks my face, and resembles more of the malar flush, not rash. It is usually always worse on the left side of my face. I get a lot of facial numbness on my left side of my face and chin as well. It is not raised. I've noticed it is triggered by heat, emotions and stress, as well as drinking alcohol. I don't drink very often at all but I feel very embarrassed having a sip in public. I feel very self-conscious in public, and at work. Sometimes I can feel it coming on suddenly for no apparent rhyme or reason. It feels incredibly hot, like an iron is being pressed against my skin. I get it very often on my ears, too.
I feel I should also mention I don't sweat when it happens, it's dry. And no, it's not menopause. I am in my mid twenties.
My rheumatologist comments on it every time I am visiting her. She'll ask me if I can feel it coming on, as she watches my face turn bright red. My answer is always yes. I always feel it when it's happening. She said since I have SS-A Antibodies, and a very high ANA I'm more prone to Photosensitivity and rashes. She said my plaquenil is supposed to be helping with it. She has boosted me to 400 mg a day, and I'm still not seeing a difference in my flushing. It almost seems to be getting worse as more time goes by. I'm afraid it's going to cause permanent redness.
Any suggestions or help? I want to prevent it the best I can, and feel less self-conscious in social situations. Thanks in advance! :)
I have facial flushing too. Mine doesn't sound as severe as yours, but when it's bad I'm always surprised at how bright and noticeable it is. My General Dr. initially treated it as rosacea and the gel I was prescribed helped somewhat but didn't cure it. It sort of went away for the most part, but will reoccur when I'm not expecting it of course. I thought it might be a lupus rash but my rheumy said he didn't think I have lupus so maybe it is rosacea. Whatever it is, I hate it cos it's so unattractive and people stare. I've used make up in certain circumstances and that helps.
SIXTY, I am sorry to hear that.. Do you remember what kind of gel it was? Make up does not hide mine when it comes on.. :( I just feel like everyone stares and wonders what on earth I'm blushing about. My Dr says I have Lupus based on my symptoms, but I have only tested positive for ANA, SSA, Thyroid Peroxidase Antibody, and smooth muscle antibody. I don't know if there's some sort of other underlying cause that I could treat to make it stop.. I just want to feel confident again.
Mostly what I experience is my face being blotchy red at times then dry, and irritated feeling. I have had it feel like a sun burn.
susanep
I am ANA and SS-A positive, too. No Lupus so far. My face got really red when I had a bad reaction to dilating eye drops. It gets not as bad periodically. I am beginning to wonder if it has something to do with anxiety, sugar or caffeine. Since it happens to you when you drink alcohol, could it be any type of stimulants? Something to think about. Hugs, Judie
Judie P, definitely something to think about. I need to lay off the caffeine, I'm sure that contributes. Although it's so hard to give it up, because it gives me energy when I just get feeling too tired. I will need to try cutting back on it.
I can't remember the last day passing that I have had no flushing.
I have the flushing and it is a pain. I guess mine is rosacea but I don't get any bumps or papules but I can feel my nose swelling when I flush. I haven't really drank any alcohol for 10+ years because of the flush/redness, plus alcohol makes me ache like a flare does. I will tell you that prednisone banished it and any skin conditions for 4 years as long as I avoided alcohol, spices, aged meat and caffeine as well. My rheumy says it is not lupus as I don't have a positive ana and the lupus rash spares your chin - mine does not. Maybe you have an allergy? Have you ever tried an antihistamine to see if it helps? I hope you get it figured out soon.
trc1962, you bring up a really good point.. I do take an antihistamine every day but I wonder if it could even be a food allergy?
How often were you taking prednisone for you to not notice your roseacea anymore?
Long before AI was in my picture, I knew I had facial flushing after eating chocolate. It was definitely a trigger. Caffeine probably would be as well, if I were able to drink it (jitters out of control).
You might keep a food diary for awhile. It seems like even a short while would yield some good information,
You might also ask your doctor about topical Ivermectin (Soolantra?). It's expensive, but has had some good results. My eye doctor said she's had some patients that tried the old, cheap, Ivermectin pills and also found success, but the topical form has recently been approved for rosacea.
Thank toy Sooki! I will try keeping a little food diary, great idea! I will also speak to my Dr about trying that drug out. It sounds promising.
Wanted to weigh in on this one...which doesn't add much to what others suspect or reveal heretofore. It is a strange condition I've had all my life.
I have flushed under what I once believed was due to heat. This was face and chest. I would also feel warm all over..but seldom did I feel I was perspiring profusely. I could flush playing hide and seek...or tennis...etc. As an adult, and drinking, most alcohol would cause me to flush. I would be asked about it constantly until those around me knew what was happening. I always lived in Texas..warm weather...but when we have the "other" season (cool weather) and go from heat to cold and back again, I can or did flush...until I got old. Knocking on the door of 74, I stopped this about 10 years ago. I stopped drinking likely in mid 40s. By about early 60s, I began to have a drink here and there...maybe once or twice a month. I did NOT flush at those times...unless I went from a cool restaurant to hot outdoors. So, I finally concluded the alcohol would heat my body and cause the flushing.
Now to AI, rosacea, psoriasis, etc: Between 40 and 50 I had scaly patches on my legs and arms. They didn't look like plaque psoriasis which my mother and her father had. Derms denied it was psoriasis. By 50, those patches continued...spreading larger AND I had the classic butterfly + facial redness without the chest flushing. Here's the thing: body temperature was maintained...and the root of that was completely different. One---it would never subside. I was treated for rosacea. NO other condition was referred to. One of the teachers where I worked had suffered rosacea for many years...15 + my junior she said it just accompanied our blonde skins. This lasted at least 2 years. It would fade and return. This is when the aching, fatigue and lack of stamina seemed to hit overnight. Was it SjS onset? No one will ever know. In one of those years I took a 6 week leave of absence due to weakness. I had a grueling schedule. With help of a non working therapist in our community to take my caseload...I was able to do this. At the end of that time I would resign ...or recover. It was a flip of a coin to me. At the end of the time, I was not 100%...but was stronger. Still not able to eat much or regularly, my strength was coming back. Looking back (this was after SjS dx) I realize that was the moment my life changed dramatically. Black and white, day and night...etc. So back to work.
My point is...the skin stuff materialized about the same time the other did. Dryness of my eyes had been noted...and as to mouth dryness, I drank such a lot of water...all day (for years) (you can't do speech therapy without getting thirsty) I wouldn't notice. My body always craved a bunch of water in the late afternoon and early evening. so ...I'll never know about early oral dryness symptoms.
Now then: I STILL have reactions to temperature changes. In texas this time of year, you have A/C on during the afternoon...heat at night...etc. Warm clothes in the a.m, t-shirt in the p.m. Strange. anyway...as my body adjusts to these changes, I will sneeze or have chills then sweating. Of course, you all know the sweating comes from the pilocarpine. I don't flush anymore...or should say it's infrequent. I have related that flushing to hot/cold in my native state forever. Now my flushing area is neck region.
Years ago I read up on Lupus...thinking that was it. Now my rheumy has denied that possibility. My body is just strange. Oh...forgot to say...I was finally dxed with psoriasis...but I have guttate psoriasis....not placque.
This is an interesting thread.
c3
cccourt1942, thanks for your response! I definitely started noticing my flushing first from the fluorescent lighting in my work break room. I thought it was strange, everyone I went in there to eat lunch, I would always start flushing. I then began noticing it with the heat when I would go out to my warm car. And from thereon, it has just gone crazy. Interesting you did end up getting diagnosed with psoriasis. I wonder what my body is trying to tell me. If only it were that easy. I just hope it doesn't turn into roascia or turn into permanent markings on my face due to blood vessel damage..
Please check out this site:
It could be mast cell activation disorder.
http://www.mastattack.org/?s=mast+cell+symptoms
Thank you for sharing that, jazzlover! Very interesting.. It also lead me to reading about carcinoid syndrome. Now, I don't necessarily think I have that, as the only symptom I have is the flushing, and occasional heart palpitations. But it sure has me curious!! I feel slightly reluctant asking my Dr about it, because I don't want to pay for unessessary testing that I might not be able to afford.
If you have it, you will eventually figure it out. The flushing can get worse and worse, along with the heart symptoms.
Just keep it in mind.
I have posted about my issue with foods with histamine and how avoiding them helps. However my face is really red today and it hurts and I have been eating careful all month! I am ready for a couple of squares of chocolate! Usually if I avoid caffeine and aged meats and nitrate heavy veggies then I am okay. My body went crazy at the end of January! I hope you can figure what helps/hurts your flushes and can get it feeling and looking better. I have been really self conscious this week at school as I can't completely cover my redness either. It just stinks, that is for sure! Nothing topical has really helped although Clinique products don't aggravate it.
If any of you are having the flushing off and on with the palpitations do not be afraid to ask your doctor to check you for Carcinoid syndrome. This is a weird disease that causes growths that secrete hormones. They look like little tumors.
I had one found on my appendix during my hysterectomy (I was so thankful I had abdominal surgery so it could be found) back in 1990. It was found in time as the serosa was just starting to erode. Carcinoid tumors are neuroendocrine tumors that are a cancer. They didn't call it cancer back in 1990 but called it a malignant condition. Strange thing--they discovered since then that it is indeed a cancer because it spreads and takes lives.
About 8 months after I had my appendix and carcinoid tumor removed one of my sons classmates had a mother who died from carcinoid tumors. They can start pretty much anywhere but like to hang around in the abdominal cavity and the lungs. The intestinal tract has a lot of lymph tissue and that seems to attract this type of cancer.
There are meds for this disease but it can be a hard battle with this disease. I also had a high school and nurses training classmate who died from this. She went to ER thinking she had a hot appendix and when they opened her up they found she had a carcinoid on her appendix and a cancer in her colon in the same area. I am glad this got mentioned as it isn't much talked about but it is a serious health issue. Good to know as we raise kids and grandkids.
The testing I had to have done for a couple of years is a 5H1AA urine test. It is a 24 hours urine test. There is a blood test that can be done also but it is more spendy than the urine test. If your doctor doesn't get too excited about this be adamant that he checks this. When we have autoimmune issues it is just the nature of the beast. The immune and autoimmune have to do with the killer cells which are the ones that kill off the bad cells. If everything goes awry then the bad cells can grow when they shouldn't. A very simple description. Take care all. Irish
irish, thank you so much for your response! I am so sorry to hear you went thru all of that.. Looking back, did you experience any typical symptoms for carcinoid syndrome before you discovered you had the tumor? Also, I know prices will vary with insurance, but are you able to give me a very rough estimate of how much the urine / blood tests cost? You can message me if you'd feel more comfortable. From what I understand, it can occur for a long period of time before it's caught, due to the slow growth. I keep thinking to myself, I'm too young for this stuff.. But reality is, it could actually happen.
Trc1962 have you tried any specific topical creams? If so, we're they over the counter or prescription? I'm sorry to hear things aren't going well.. It can definitely be very frustrating when you can't control what your body does. I don't even want to live the house some days, I get so self conscious..
sjocool, I do not remember how much these tests were, but I remember that the one blood test I had was spendy and I reminded myself never to have it again.I did not have any symptoms at all of this carcinoid. The problem with them is that they do grow slowly and by the time the symptoms show up they have often spread and affect enough tissue that chemotherapy is used and can take a long time. I have forgotten if there is a cure rate from them. With the slow growing tumors the growth can take so long that a person can think they are gone and then another one shows up.
The chances are that you don't have this, but with flushing and having autoimmune it is good to have the testing done. Those of us with autoimmune can get some weird stuff. Good luck. Irish
Testing for a carcinoid might be a good idea, but MCAS is MUCH MORE COMMON and much more likely.
Google "histamine intolerance" at the very least. The Low Histamine Chef website has a lot of good info too.
I will be seeing my rheumatologist towards the end of April. I will talk to her about this and see what I can do about further testing without pinching my wallet.
Jazzlover, very interesting about histamine intolerance. I've very recently stumbled upon "leaky gut" and "candida overgrowth". Really makes one wonder. The past two months I've really started getting congested. Especially after I eat. I have to immediately blow my nose and clear my throat of excess mucus. It's annoying to cough and blow my nose after every little thing I eat. It doesn't seem to happen more with certain foods. I have tried watching what I eat but everything seems to be causing it. I currently take an allergy pill and a decongestant everyday but it still doesn't seem to be enough. I don't know what more I can do.
If only it could be something as simple as that, just a bacteria overgrowth as the root of all problems. It's a very curious thing. I've read articles linking candida overgrowth at the root of autoimmune diseases and cancers as well. It would be so neat if we could heal ourselves by just simply eating things to heal our gut. Part of me is hesitant on leaky gut syndrome and candida overgrowth. Is it real? Why haven't any if my doctors mentioned it once?
Yes, leaky gut and candida are real. Far too real.
I believe all my issues became flared after a colonoscopy in late November. The colonoscopy was nothing, but the prep horrid and right after that I started not being able to go to the bathroom like I had all my life. I think the prep wiped out my good bacteria - I don't know but I won't be signing up for a colonoscopy anytime soon. It is just so complex this autoimmune stuff and we have complex bodies - T cell and B cell over activity, cytokines...and my rheumy just doesn't focus on those things very well - most of them don't get into histamine stuff yet or mast cell disorders. Sigh....
I have just been diagnosed with Sjogren's within the last two years. First I was diagnosed with Selective IgA deficiency. For years starting in my early 40s I was told the flushing on my face was diagnosed as Rosa cease. I even started having large pustules. After I retired when I was 54 around that time it disappeared. Perhaps it was Sjogren's all along. I wish there was a way to educate doctors and the public more widely about Sjogren's. Carolyn
Quote from: trc1962 on July 30, 2016, 10:12:09 PM
- most of them don't get into histamine stuff yet or mast cell disorders. Sigh....
-Most allergists don't either. You will need to do your homework to find a doctor who knows the score with this. Let me know if you need any help.
15 years ago my autoimmune problems began with flushing as well, mostly in my face and I thought it was rosacea, but no rosacea in the family. Now I believe it is a type of mast type cell disorder that shows as histamine intolerance and I thought I was doing well by taking antihistamines and eating low histamine. Although my face did better and my hair fall slowed, the inflammation continued on the inside of my body until I presented with a "flare" that presented with neuropathic symptoms and began in my legs. Long story short, no doctors in my area know much about mast cell type disorders and definitely don't think it could possibly be autoimmune related. I myself am not sure either, but going to Seattle in a month to get their opinion. Hoping you can figure your flushing out as well because it sure can go farther than your face. I would add that my flushing has no bumps at all that would resemble rosacea...just flushing.