Monthly Archives: July 2013

Over 6 Months and Very Triumphant!

Well my goodness, how does time fly.  I think I owe all you wonderful people another post, since this blog has been silent for a good few weeks.

With TSW blogs, it’s more often than not a good sign when someone doesn’t post in a while!  As my fellow blogger Louise has written, she is “blogging less and living more”!   And the same is true for me.

I would say that I am currently about 90-95% healed and I’ve been that way for at least a good few weeks.  I never thought I would be able to wear shorts, short sleeves or tank tops in public again, but have done so multiple times over the past month!

What TSW victors say really is true, though it’s difficult to believe in the depths of the rash and the itch and the insomnia.  One day you just kind of realize, “Hey, I’m almost healed!”  You start doing “normal” things again, like exercising consistently, not worrying about food, not being obsessed with looking in the mirror at your skin, and choosing whatever clothes you want.  And you sometimes don’t even realize how “normal” things are now, until you take a look back at the dark TSW past, like maybe you run across some pictures of you in the worst of it, or you find your stash of creams or “TSW outfits”, or you realize you have zero need for Vaseline anymore and almost kinda hate the stuff!

I have made a huge dive back into fitness and exercise in these past few months of feeling and looking so much better.  I was a pretty die-hard exerciser, so when my consistent exercise routine got sidelined for a few months (first with a cold that turned into nasty bronchitis thanks to asthma, and then with the worst of TSW), it was kind of like I had lost part of my identity.  Now I am exercising a BUNCH!  I am running, biking, swimming, and lifting with renewed appreciation for my healthy body and how it has healed and how it can do all these amazing things that we so often take for granted.

Now here is where I want to add a little disclaimer, and I think I have brought this up before.  Some people might be reading this and pout and scoff, “Well!  Ms. EczemaExcellence is all fine and good to write about being nearly healed in 6 months, but there is no way she had that quick of healing!  Most adults take at least a year!”  And to that I say, “Why yes!  Yes, gentle reader, you are absolutely right!”

See, it was around this very time last year, that my skin started getting bad.  I actually remember that one day, I was so fed up that I wrote an angry letter “To Eczema”, stuff like, “Dear eczema:  I don’t understand why you’re ruining my life, you’re so controlling and I’ve done everything to try and get you to go away!  I just want to look normal again!  With the help of God, I banish you!”  Not like I thought this would help, but I was desperate and I thought it might be therapeutic, haha.  And it was just over a year ago that I started this blog, and then continued to embark on the journey of trying everything to “cure” myself, until I discovered TSW and then OFFICIALLY stopped all steroids in January.  But without a doubt, I was going through TSW well before I even knew about it.  And my use of steroid creams from July to January was really sporadic, so this use probably just prolonged my healing a little bit.

All that rambling to say, I know I used the title of 6 months, but it really is more like 1 year.

So what is my skin doing today?  As has been the case for the last months, any lingering “eczema” areas are localized to behind my knees and on my arms.  One day recently I wore shorts to the gym, and after working out on the machines, broke out in this weird itchy, bumpy rash behind my knees (which thankfully only lasted a day).  Clearly there was some kind of contact dermatitis issue, so I still have sensitive skin and have to watch out and be cautious about what I come in contact with.  I also got super excited by Miss Kitty’s post about being able to pet cats, and promptly figured that maybe I also would get lucky and be able to roughhouse with dogs in a blissfully itch-free manner.  Visiting a relative’s dog yesterday, I didn’t even TOUCH the thing and my skin and eyes got itchy, so I know that lovingly petting animals is still, sadly, a no.  (This is fine though, I can still admire them from afar.  In the grand scheme of things, there are worse maladies than not being able to hug a dog or cat).

So, I still do itch and get scabs here on my limbs sometimes, but nothing crazy, more just like “normal” eczema, I guess.  I am waiting for some scars to heal and fade before I truly have “clear” skin, but it’s clear enough for me to live with!  ESPECIALLY because my face and neck are no longer affected and to look at me, no one might be the wiser that I ever struggled with this itchy bastard of TSW.  I have the graphic pictures to prove it, some of which I never even posted on this blog, but even for me, the memory of the sleepless nights and the oozing and all the grossness is distant.  I lived it, and I don’t think I’ll ever forget it, but now it’s all about “What have I learned from the experience of TSW that I can use to help others that might be suffering”.

I don’t post a ton on the ITSAN forum and though I try to make my way ’round the blogs, I don’t comment as much as I’d like, but truly – if anyone needs an encouraging word, you are more than welcome to contact me!   Stay strong, skin friends, you WILL come out triumphant on the other side!

 

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Asthma Medication Rant

Like many other ‘eczema’ sufferers/atopic individuals out there, I also have asthma and have had it since childhood.  My asthma is very well controlled with the help of the wonderful pill Singulair.  I almost never have to use my rescue inhaler and my daily activities aren’t limited – I can generally do high intensity exercise with no trouble breathing.

Singulair used to only be available in a brand name form, but recently (within in the past year), drug companies have been given the green light to go ahead and produce this medication in a generic form, with the same active ingredient, montelukast sodium.

This past fall, I received the generic and when I tried it, my eczema got worse and I got puffy eyes.  When I stopped taking the medication, these effects went away.  I don’t think this was just a fluke because I then tried it again and got the same results.

At the time, I filed a claim with the FDA and also called the drug manufacturer to get a list of the ingredients.

This is what is in generic montelukast sodium tablets:

Each 10 mg film-coated montelukast sodium tablet contains the following inactive ingredients: hydroxypropyl cellulose, hypromellose, iron oxide red, iron oxide yellow, lactose monohydrate (128.6 mg), magnesium stearate, pregelatinized starch, sodium lauryl sulfate, sodium starch glycolate, and titanium dioxide.

Basically mostly a bunch of colors and fillers, but the one thing that worries me is seeing Sodium Lauryl Sulfate, or SLS, in the list.  According to the Environmental Working Group, SLS is suspected to be an environmental toxin and has strong evidence of being a human irritant.  I don’t have the focus to get all science-y in my blog like one of my overseas TSW buddies, Miss Kitty Fantastico, although I’m sure this subject is just begging for some graphs and diagrams, but hell, let’s briefly give you a bit more evidence why this SLS stuff probably sucks for all of us.

Let me present a few studies to you where healthy controls were compared with atopic controls being exposed to SLS.  Atopic folks were found to have a statistically significant response with irritant dermatitis.  Here is another article that is pretty comprehensive and cites other scientific research.

So, okay, these types of studies are all over the place, we know that SLS isn’t the greatest thing to be using in our products like shampoos and hand soaps, ESPECIALLY if we have a compromised skin barrier due to eczema or contact dermatitis.

But if I’m actually ingesting this stuff, how does that bode for me?  I find it very ironic that, on the Material Safety Data Sheet for SLS, it says, “Hazardous in case of ingestion.”  Then we read under the Toxicological Information, in part:

Special Remarks on other Toxic Effects on Humans:
Acute Potential Health Effects: Skin: Causes mild to moderate skin irritation. May cause allergic reaction (dermatitis) Eyes:
Causes moderate eye irritation. Inhalation: Material is irritating to mucous membranes and upper respiratory tract. May cause
allergic respiratory reaction. Ingestion: Causes gastrointestinal tract irritation with nausea, vomiting, hypermotility, diarrhea,
and bloating. May also affect behavior (ataxia, somnolence), and cardiovascular system. Chronic Potential Health Effects:
Skin: Prolonged or repeated skin contact may cause allergic dermatitis. Ingestion: Prolonged or repeated ingestion may affect the liver. Inhalation: Prolonged or repeated inhalation may cause allergic respiratory reaction (asthma).
Oh great!  Nausea, vomiting, diarrhea, and bloating?  Not my idea of a fun evening.  Maybe I should be glad I *only* had puffy eyes and rash.  And does anyone else find it ironic that in the last sentence it mentions this chemical may cause asthma, but it’s an ingredient in the very medication used to TREAT asthma??  No wonder you can find accounts all over the internet of people that took the generic Singulair and had their asthma actually get worse.  Do I believe everything I read on the internet…. no, but one can certainly see why lots of people might be reacting to this medication.
My insurance recently told me the lovely decision that “We no longer will cover brand-name Singulair because of the cheaper generic version available.”  After spending enough time on the phone to grow a couple gray hairs and insisting to every customer service rep and pharmacist that the brand name is medically necessary for me and that my doctor is aware it’s a drug that needs to be D.A.W. (dispensed as written – meaning, Don’t give me the generic stuff, this girl needs the real thing), the only thing I can do now is file a letter of appeal to the healthcare company.
If the letter of appeal has no effect, I have two choices.  I can pay out of pocket for brand-name Singulair, which by my calculation, is over $3.00 for a pill PER DAY.  At this rate I could be forced into poverty, but boy, will my lungs be clear and healthy, which will bode well for me when I become homeless and have to live under a bridge on the freeway and be subjected to repeated onslaughts of car exhaust.  [Please keep in mind this post is written slightly tongue-in-cheek, so don’t feel like I’m a charity case with a “poor me” attitude… I’m not 🙂 ].  My other choice is to simply stop taking ANY pill form of asthma medication and just rely on my inhaler if I need it.
I’m of the mindset “If it ain’t broke, why fix it”, and being that I’ve taken brand name Singulair for nearly 10 years, I’m naturally suspicious of what could happen if I cease taking it.  Now back relating to TSW, I have read some hopeful things on the forums and such about people whose asthma got MUCH better once they healed from their steroid usage.  I believe this is perfectly credible.  I saw my own suspected food ‘sensitivities’ and seasonal allergies completely disappear now that I’m healing nicely from TSW.  However, I had asthma well before using any sort of topical steroids, so for me personally, I feel like they are not intertwined, but who knows.  Maybe the only way to tell is to do a test for a week or more where I take ZERO asthma pills, and then go back to the Singulair while I still have the buffer of about a month’s supply left, which is likely what I’ll do.
I’d love to hear anyone else weigh in if you’ve reacted to generic montelukast as well, if you’ve also experienced the hassle of trying to get insurance coverage for Singulair, or if you just have any thoughts or recommendations on this situation in general!
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