Saturday, June 3, 2017

Y'all were right.

Thanks to those that cautioned me to be super vigilant for flares of autoimmune activity after my stressful spring. Because even though adrenaline kept me going strong through Mom's funeral and the trip back home, I was knocked for a loop over the last few weeks with tremendous fatigue and a brand new addition to my autoimmune club -- rosacea. And it isn't pretty:

Would YOU be willing to be seen with someone sporting a nose like this?? Ewwww.

My doctors suspect that the stress I've been experiencing lately contributed to the appearance of rosacea. And I was surprised to read that this schnozz-reddening disease could be autoimmune in nature:
Female rosacea patients have higher rates of autoimmune disorders including type 1 diabetes, celiac disease, multiple sclerosis and rheumatoid arthritis. Men, with rosacea, however, were only more likely to suffer from rheumatoid arthritis, according to a recent study.
The findings, published Jan. 30 in the Journal of the American Academy of Dermatology, provide more evidence of a link between rosacea and autoimmune disorders.
“Rosacea may be a marker for autoimmune disease,” says study lead author Alexander Egeberg, M.D., Ph.D., who works in Denmark at the Department of Dermato-Allergology at the University of Copenhagen’s Herlev and Gentofte Hospital.   Continue reading here
So my plan of care lately includes rest, rest, and more rest; as well as following a careful regime of cleansing, moisturizing, applying topical medicines, and sunblocking my face.

Here's hoping that I can beat this into submission before Daughter #1's wedding in September.


Kelly said...

Oh Julia, first I'm so sorry for your loss. Somehow notifications that you have a new post are getting shunted to promotions so I missed your earlier posts. Rosacea, blech. It runs in my family. I have a lighter case, but my sister has it and my mom and grandmother did too. More hammock time is definitely required to rest this pesky flare into submission.

Unknown said...

Aw Julia,
I have the same thing that popped up around the same time I was diagnosed with Sjogren's in 2013. It's my barometer in a weird way. And always gets better or worse along with flares. I tried topical medicines and natural oils like coconut and sesame oils mixed with helicrysum with no sign of improvement.
I use a light dusting of Bare Minerals powder to blend it and that works really well.
Hope you get lots of rest and enjoy this summer with family and friends!


Anonymous said...

Hi Julia:

I feel so bad that you are experiencing this new development in general but also on the heels of losing your Mom.

I too have Sjogrens, small fiber neuropathy, hashimotos, Celiac etc

My face looked like a burn victim with cystic acne all over my face, neck, chest, and ears.

When my pulminolgist asked me what was going on with my face I took notice. I told him I have Rosacea and he said that may be but that's not your main skin issue what you have is Celiac Disease/Dermatitis Herpetiformis (skin version of Celiac).

He sent me to a GI specialist and he a new dermatologist. After routine blood and gene testing, endoscopy and colonoscopy, I indeed have Celiac and Dermatitis Herpetiformis.

Within 2 weeks of clearing all grains and dairy from my diet my face cleared considerably without medication for the first time in 15 yrs! I ate fresh fruit, vegetables and protein. Nothing else and nothing packaged.

Now I still do have Rosacea but as long as I stay out of the sun, wind, heat and cold I have no real outbreaks. If I do get an outbreak it's a few red dots not a manisfestation. I use topical Metronidazole 1x a day now.

I was gluten free (or so I thought) before testing but I discovered Synthroid and Plaquenil, coffee and spices were not GF.

Also, GF food products are not truly GF unless they are Certified Gluten Free and their facilities are CGF. An executive at General Mills told me I should not eat their GF products being Celiac!

Most antibiotics, muscle relaxers, gabapentin, and the usual arsenal of medications we take for our auto immune issues are not GF or manufactured GF.

During taking these drugs, I broke out from head to toe with liquid filled pockets of infection and my skin was on fire, itched uncontrollably and swelled many times. My doctors treated me quickly with high doses of prednisone while praying I didn't go septic.

My doctors kept saying I was allergic to all these meds when now it's question of was it the meds or did they contain gluten or both?? We'll never know.

Plus a combination of antibiotics to treat my "Rosacea" while on Methotrexate landed me in the hospital for almost two weeks with Hypersensitivity Pneumonitis, Hypoxic Respiratory Failure, Interstitial Pneumonitis
Inflammation Alveolitis Septic & Pericarditis.

Because of that today, my doctors will not prescribe any meds for my auto immune diseases except if I have a bad flare they prescribe Prednisone which has saved my life but I take nothing daily.

You can search for which are GF or call the manufacturer. I do both for OTC and RX.

I take Tirosint thyroid medication now. It is made for Celiacs. Both brand and generic Synthroid is not GF.

I didn't mean to make your post about Celiac/DH but I wanted to mention that my Rosacea masked me getting a dual diagnosis and if this info can help someone and save them 15 yrs of pain and suffering it was worth it.

I joke now that if you want your skin issues addressed go to your lung doctor! Mine diagnosed what 4 dermatologist missed! So never give up until you get the right Doctor no matter what!

I wish you healing in Godspeed both physically and emotionally with the loss of your Mom. Rest, rest, rest!!

Thank you for your blog, your attitude, humor and information you are priceless!


Unknown said...

I'm sorry, not what you need after all you've been through.
I also have Rosacea, Here's what helps me. I use a cream called Finacea, prescribed by my dermatologist, now sparingly, but twice daily in the beginning. She wanted to put me on antibiotics, but those exacerbate my autoimmune disease. All of the sunscreens I could find locally had titanium dioxide or propylene glycol, which bother my skin. I found one online, by DeVita Organics, made with aloe and zinc, does not bother the rosacea. I now use their moisturizers too.
I follow a strict diet, but not saying that would work for everyone. 😱
It helps my skin issues too. I think it's gluten, alcohol and spicy foods that make my rosacea flare.
Oh, and, remember, Wear a hat. I'm looking into the UV film for our car windows, more because I flare from UV light, but would be good for rosacea too.
Good luck, be well.
Jody Mac

Amy said...

Ouch. Sorry for this new addition to the AI list. It's such a motley crew of characters, AI diseases. How I wish that they would be less sociable and hanging out together.
I found myself saying "It's always something" and that's a phrase that my Grannie used to use. That an "Well, if it's not an ass it's an elbow." I have NO idea where that phrase came from. It's Canadian I think?
Wishing you well. Think of you often Julia as you were my first solid source of Sjogren's information when I was diagnosed. Sending warm hugs from Texas.

Nicole said...

I have mild rosacea as well. It's actually the thing that set me on the path to diagnosis, because I wanted to know what caused it.

Alana... wow! Plaquenil has gluten? Not okay! Thanks for the heads up!

Anonymous said...

Dear Julia,

So sorry to hear of this latest trial you have to bear with our illness, especially after all you've been through with your Mom's death.

Not surprised that you have a bad flare of something happening, though, with all the stress and adrenaline of running back and forth, and then taking care of the funeral. I'm just amazed at the amount of energy we can have going through a strenuous situation, but then we pay for it, as you're finding out.

Autoimmune disease.......the gift that keeps on giving. I know you'll be strong and get through this as you've surpassed other painful illnesses.

Good luck and be well and keep taking care of yourself.


Liz J said...

Hi Julia ~ I went from the diagnosis of MS, added Rosacea, then Sjogrens, and Raynauds over a 30 year period of time. When I had Rosacea really bad it was peri-oral ~ around my mouth. I worked at a hospital and had to go to meetings and take notes, always hoping some doctor would see me and diagnose me! Didn't work that way.....Unfortunately autoimmune disease give you more than one as a rule. There is medicine so please see a dermatologist. I have outgrown mine for the most part and rarely have an outbreak or need medication. My left cheek will still get red at times and I know what it is, but it goes away in a couple of hours. It's different for everyone. Stress is the pits and causes us so much harm. I wish you well. Liz

Janet said...

I hope your nose heals up before the wedding. I know what that's like. I got a horrible perioral dermatitis rash last year when my MIL died and I could not travel to California for the funeral because it was so bad! Luckily everyone understood after I explained. Yes, try a little Bare Minerals on your nose or go see a makeup artist at a department store and learn how to cover it. My son is getting married in September, too, so I have been rushing around getting new eye plugs and prescriptions filled as it is a destination wedding. The stress is not helping my symptoms any, either. But, I am going to keep a positive attitude and enjoy the wedding! Yes, try to keep your stress levels down (easier said than done with all it sounds like you've been through recently) and above all, have some real fun at the wedding! God Bless...