Protopic: Tacrolimus - I asked my Dermo

SO! A comment came through that said "New medication from my dermatologist is tacrolimus ointment. Calms everything down and doesn't have any side effects. A lot of the drugs and creams actually make you itch worse." Thanks for sharing Charlene!

I asked my dermo about it and she said the (paraphrasing) following:

It's "street name" is Protopic, and it's a non-steroid cream so unlike Accutane dermatologists can offer it to people like us with little worry because the extended use of creams for us (as we are lifers with DWD) is okay without the nasty side effects of steroids (hair loss, weight gain/loss...)

I didn't pick any up because it's new and exciting which means = $ expensive $

And you need a prescription for it (why if it has little to no side effects and doesn't have steroids?!) 

It sounds like something I might be interested in a few years when the hype dies down and I hit my 40s. 

Here's what the internet says: 

This form of tacrolimus is used on the skin to treat a skin condition called eczema(atopic dermatitis) in patients who have not responded well to (or should not use) other eczema medications. Tacrolimus belongs to a class of drugs known as topical calcineurin inhibitors (TCIs).

And another write up from Rexall:

Tacrolimus belongs to the class of medications called immunosuppressants. This medication is used on a short-term or intermittent basis to treat atopic dermatitis (eczema). It is also used to prevent eczema flare-ups.This medication works on certain areas of the immune system that may be involved in developing this skin condition. It is used when standard treatments have not worked or if there is a reason they cannot be used.

SO! Charlene and anyone else willing to tell us about how their use of Protopic/Tacrolimus is going? Any reviews?

I just want to feel normal.

I have a tough post to make here.

I recently got an email (thanks for those by they way! Always happy to connect!) that ended with "I just want to feel normal."

I can't help you with that.

What I can do is help you learn from my mistakes and triumphs - but ultimately only you can find your "normal" and I put those in lil quotes because I also don't believe in normal. That word is loaded with baggage so I urge you to find what makes you YOU and you happy.

Y0u can help yourself by seeing your family doctor, then I would highly recommend finding a Natural Path. I had a great experience at Robert Schad Naturopathic Clinic here in Toronto.

Under the recommendations that the above parties give you I also recommend cutting out triggers and allergens like:

-alcohol
-high sugar intake
-cow dairy
-whatever makes your skin (and stomach) crawl when you eat it

I also recommend using gentle and natural products like:

-Perfume free moisturizer (I love the Aveeno line or their knock offs + I live off of Life Brand Vitamin A cream.)
-Perfume free laundry detergent
-Moisture rich shampoo (I'm really liking Rosemary Mint by Aveda) as less crap in your hair = less itchy/scaly skin on my head and neck.
-ditch as much makeup as possible as it only irritates the skin, but if you have to I have been having a good time with Cover FX for hiding bumps and redness.

I also recommend asking about vitamins. I take a women's multivitamin + Pine Bark Extract + B complex + D, and sometimes Zinc + Omegas + Probiotics.

It's a bit overwhelming and I can't say that I have been 100% following my own rules/reco's - but when I do I feel better and have fewer flare ups.

This is not to say I don't have any trace of my Darier's.

I ALWAYS have bumps.
I ALWAYS have redness.

It's just manageable with the above regime.

See?

Stress.
Lady Time.
Parties with all the sugary treats and alcohol.
Sweating really hard at the gym.

All that and more makes for visible/more bumps. That's just life. For me anyway.

So I'm really terribly sorry, my blog isn't doctor approved, nor is it the recipe you have been looking for to make this go away (but if you have it please share with the rest of us!)

 I'm just letting you in on my side of the fight against Darier's - and I hope you take something positive away from it. I hope you share your struggles and wins with me so we can learn from each other.

But other than that?
It just goes on. I wear a lot of scarves. I have a lot of cover ups for the beach. I try to avoid certain foods if I know I'm going to have my picture taken or whatever - and I have had a shift in career to get behind the camera rather than in front of it. It's my way of dealing. But that's just it - my way.

Please share your way of dealing and maybe it will help others too. That's all I'm doing here :)

Thanks for your emails and comments.
I hope we can help each other out.

-Adrianna

Tattoos and Dariers

I got a tattoo!

A teeny tiny tattoo...

That's me & my brother getting a tattoo!

I was worried that my skin disorder would FREAK out so I started small: it's probably about 2 cm x 1 cm in total and I used dark brown ink on my forearm. Now I got it in a place that doesn't have flare ups, but I was told that it could go either way with tattoos. 

My experiment has so far been a success! It's been 2 months since I got it and it is healing perfectly. Do I want a back tattoo over my regular flare ups? Not really. But if you were shying away from your decision to get a tattoo because of your DWD I would say to find a place away from the regular hot spots. I did what they told me: kept it clean and dry except for the recommended moisturizer and out of the sun (which is easy for a Ginger like me!)

So! No reaction out of the norm and now I am planning my next tattoo... 

A little call out to those in the UK

I was recently contacted by Discovery Channel and Betty to see if anyone in our community would like to share their story:

The message I received from Jessica: 

The documentary we are making will follow single men and women who feel that their love lives have been affected by a medical or physical condition and as a result may not feel entirely comfortable with being open about their condition when they first meet people. We would like bring a bit of awareness to skin conditions, such as psoriasis, keloid scarring, vitiligo and eczema.  I understand that a lot of these conditions are hard to deal with because there is no simple cure and individuals may have to live with a condition for their entire life.  I wondered if anyone from the UK ever got in touch with you about Darier’s disease? Darier’s disease isn’t something we have previously featured, and it would be great to provide some awareness to a new condition.

I'm intrigued, aren't you? I think sharing our stories is necessary to end stigma and create community! I hope you message her :)

Finding stuff online

So I'm not new to the online world (hi, this is a blog) BUT I don't know why I haven't fallen in love with things like digg and reddit.

Well I may now!

http://www.reddit.com/r/skincareaddiction

Here is a very active list of online users who just talk about SKIN!

Have you posted there? Do you use this site? I feel like I should make it a habit to check it out a few times a month if not more.

Let me know where you hang out for info online, I would love to make a bookmark list of cool sites.

Living with flare ups.

So my January and February were both nuts. Seriously. I don't think I managed any downtime until this past weekend, the last weekend of February. I had a major major audition that made me live on edge for a week and then a final term paper due the day after. It was a stressful time.

So I needed to unwind! I went to a friend's cottage and kicked back a few beers and eat vacation food (read: sugar and fats) for 48 hours. Guess what happened?

This:

Yup. Sad Panda. 

A flare up so bad that it hurt to wear clothes. The camera doesn't capture just how raw it is (because it's still flaring!) and how much it has grown. It has turned up along my neck again and all down my back. Does your DD move around your body too? Mine used to be thighs and neck. Now it's mainly neck and back? 

I am trying to eat clean: lots of veggies, oatmeal for breakfast, no processed/added sugar, a hault on all things alcohol. It feels like I'm back in detox. I haven't started the food journal but if it doesn't get better in a week's time I think I will have to start one up again - and that means really detoxing. I cycled in Vit E cream but I find it greasy and not as good as Vit A cream but I am hitting Desperate Levels at this point!

I need to remind myself that there is no overnight treatment, that it is every action I take - I need to meditate, eat clean, and drink lots of water. I need to make sure I don't skip vitamins and pine bark. This seems so simple but then a friend's birthday is here and the party is at a bar - pop and booze = ugh. You know this story. It's hard to always stay true to your DD. 

5 Things I Will Do For My Skin

1. Drink Water like I'm a camel

2. Keep up on my pill therapy: pine bark, Vit B, D, Multi, Probiotics, *Zinc and *Omegas (which I am bad at remembering)

3. Lots of clean eating, meaning easily digested and without a lot of sugar and fat (like brown rice, green leafy veggies, oatmeal)

4. Go back to taking my tea and coffee back (sad sigh)

5. Yoga and quiet times. Gotta get that stress down!

What do you do when you flare up?

Skin irritations and Darier's

We all get the little red calloused dots. We all get what looks like a rash too. But sometime ago I noted that I got a flat burn like irritation: http://fightagainstdariersdisease.blogspot.ca/2014/10/ew-flarenew-flare.html That was Oct 2014. Here it is now:

Believe it or not THAT is "better" - it's not as raised and red, but it's still there. It's just above my waist where no clothes chaff it (if it were the 80's with highrises I would be in trouble) and it doesn't hurt at all... I just find it weird. It's the only one like it and it has been there for 4 months... Do you get these? 

I think it's THIS exact inflammation that reminds me I'm not reacting to something, I'm not "doing something wrong" like forgetting my pills or eating too much sugar (which can make this disorder worse) - nope. It's just there. And that's the way it's gonna be. Which is not fun but denying it will get me no where. 

If you have any insight into these flat rather large (it's the size of a nickel) patches let me know! I have tried all the things listed in this blog and it is still there.