The real deal: products I actually use

After years and years of testing, I'm bound to have some insights of my own, right?

Well I do. And here they are in front of you.
Please note I am not paid by any of these products/companies to endorse them.

Moisture Creams

My baseline, the best of all and most used by far, the one off of which all else is tested is the one and only Vanicream. This is your all-purpose moisturizer. I use jars of it. I use it twice a day for my entire body and carry it with me at all times (in a much smaller container, though). It basically has practically nothing to irritate your skin - the label says: "Free of dyes, Fragrance, ..." and so on. I use it because it's the best. In years of testing I've never found anything better than Vanicream for pure moisturizer. The only one that I've ever substituted for this is Eucerin, specifically Rambam's hospital-brewed version with extra olive oil.

Now, for some variety I use A-Derma's Exomega emollient cream ("for face and body"). It's good for flaky skin, as it seems to expedite new skin growth. I don't use it at all times but keep it in my closet for those flaky skin patches that tend to show up every once in a while.

Another moisturizer I recently discovered is Neutrogena's "Norwegian Formula: Moisture Wrap Body Lotion". This one helped me out of a tight spot, or rather, a red spot. I had a redness that wouldn't go away, and this one helped it disappear. This came at a cost, though - the skin was flaky when I finished, so take note.

Type-Specific Creams

I always keep a couple of prescription steroidal creams handy. These are good for rashes, scratches, and any nasties of that type.

Another type of cream I like to have is something containing Calendula, and I use it for rapid-healing of scratches or open wounds. It's amazing how fast these work. Right now I use Weleda Calendula Baby Cream, but pretty much any Caledula product will do the trick.

Finally, I keep an antibiotic cream handy for the folliculitis, or other infections that tend to cling to the skin.

Bath Products

I use a combination of two products for my bath: Balneum Hermal and Emol. Emol has a small bit of soap in it which helps keep infections away. I use a mix of 1:2 - 1 measuring cup of Balneum for every 2 cups of Emol. However, while Balneum is available from Canada, Emol is not to be found. I'll let you know what I find throughout my new tests...

An immunosuppressant druggie

As a companion post to the immunosuppressants, and continuing the "druggie" series (see "an antihistamine druggie"), here's one for that type of crowd.

Disclaimer for this type of post: Please remember that I am not a health professional of any kind. My notes represent my own experience and reactions to the drugs in the past and present. Your reactions may be different. Nor am I paid by anyone to say either good or bad things about the drugs.

General notes:

• In Israel (and possibly other countries), many of these drugs are not officially approved for atopic dermatitis, which means you'll have to get a special approval from the Ministry of Health (or FDA, or equivalent in your country). Your doctor should be able to explain how to request this approval, and/or do it him/herself.
  
• For all the listed drugs, make sure you read the instructions and leaflet really carefully.
  
• These are heavy artillery drugs, not to be taken lightly. Don't play around with'em.
  
• Follow whatever it says on the leaflet, including, if necessary:
• Avoiding alcohol
• Using extra contraceptives - getting pregnant is not a good idea while taking most or all of these drugs (see original post) .
• Whatever else it says on there!!! Don't argue, do it.
• Pay attention to any side effects you may suffer from.
  
• Go read the original post about immunosuppressants. This is just a companion to it.
  

Cyclosporine (Neoral, Sandimmune, etc.) - this is the most basic, and most often used immunosuppressant (at least in the department I'm treated in). It's well known for psoriasis and organ transplant. Generally, should not be used for long periods (over 3 months), although it can be, if necessary.
I've been on it for over 7 months now, although I finally seem to be on the right track for switching to a different drug. It worked (works) pretty well for me, but with one major caveat: I needed antibiotics nearly the whole period, for two reasons. (1) I kept catching the flu or getting my throat infected. I'm not a healthy person during the best of times and tend to catch anything that's around; much more so when on immunosuppressants. (2) My skin was also constantly getting infected, which did not help the skin to clear up. Folliculitis was a major issue and caused scratching.

Imuran (azathioprine) - an older generation drug. Considered a more slow-acting drug, but also one that can be taken for a long time with less severe effects. Didn't work for me at all, so I can't say much for it - sorry. Might work for you, or not. Prof. B. said that it does work on many patients, so maybe I'm the odd-man-out here.

Cellcept (mycophenolate mofetil) - a very new drug, as of this writing. It is supposedly in addition to cyclosporine, not instead of it. For me, it did the job terribly well, and I would recommend it warmly for most people. However (again - for me), it also had some pretty severe side effects which rendered the medication totally pointless. There was no way I could keep using it. [If you want, you can mail me privately and I'll expand.] Point being - take it if your doctor suggests, but be very aware of any ill effects. What with this drug being so new, even the experts aren't totally sure of how prevalent the various side-effects are. Note: in some countries (Israel included), this drug may not yet be approved or included in the subsidized drug list, especially not for atopic. Israelis, be ready to pay top dollar (err, shekel) for this one.

Methotrexate - a drug also used to treat certain types of cancer. I am now switching to this; so far, so good, but we'll have to wait and see. It is usually given once a week, not every day. There is some cross-drug interaction with cyclosporine, so make sure your dermatologist is aware that you're taking both. From what I understand, it is common to give a test dosage first and see what the body's reaction is, and only then up the dosage. Plus, this is the one drug I've seen that specifies birth defects caused from the male parent as well as the female. There's also some potential issues with blood clotting, which can be overcome by taking folic acid in a very specific manner. Ask your expert to make sure this is discussed.

More drugs will be added if I have the pleasure to interact with them...

News Flash: Warning Signs

Edit (6.4.08): just for clarification, these are warning signs of when your atopic is getting bad or worse. They are meant for people already diagnosed with atopic, not for the diagnosis. Only a doctor can diagnose you correctly (and even they can be wrong).

I had missed the signs. Some of them I chose to ignore, or repressed the fact they existed. Some of them I saw, but did not recognize them for the huge, flashing red bulbs that they should have been. Finally, some warning signs were written in a language I had never heard of and therefore I walked right by them.

So, know your warning signs.

1. You are scratching nonstop.
• Recognition: I know, nonstop is very subjective. Still, try to be honest with yourself. When was the last time you sat still for an hour without scratching? Can you even do that? Or are you truly the itchy and scratchy show?
• e.g. in my friend's wedding, same day as my birthday, there is a photo of me in which I am "hugging myself" - in other words I couldn't stop scratching my upper arms. And I was posing for this photo.
• You may not be that far gone, but if you are scratching a lot more than your usual self, make note of this.
  
• Result #1: The restless feeling of scratching alone can drive you nuts. Seriously. Self-image problems may also arise (can anyone say teenagers?).
  
• Result #2: If you have atopic, you'll probably hate hearing this (I certainly do), but scratching really does aggravates the situation. as I understand it, scratching causes more Mast cells to release the histamines that are causing the allergy in the first place.
• that doesn't mean I can tell you how to stop, or that people should in fact tell you to stop - sorry, that's a separate post. But it's definitely a warning sign.
  
2. You can't sleep because you're so itchy.
• Recognition: One or even a few sleepless nights are not a major indication, although you should take notice. If there's a pattern of recurring sleepless nights, beware. Sleepless nights can be either that you can't fall asleep, or you wake up in the middle of the night and can't fall back asleep.
• Result: short and long-term lack of sleep can (obviously) have a harmful effect on your entire well-being and health. It has a systemic effect, especially when it recurs frequently. You literally "need your beauty sleep".
  
3. Your skin is infected.
• See post about infections.
  
• Recognition: infections may have a few forms:
• folliculitis: acne-like pimples wherever your hair grows. This alone may have nothing to do with atopic, but if it's in combination with rashes and itching of the same areas, that is a surefire sign.
  
• secondary inflammation: bacteria may develop in the place your itching has left open wounds. Fluids exuding from the wound, or a honey-colored crust, are some indications of this. (termed secondary inflammation IIRC)
  
• Result: This is more important than you may realize. I certainly didn't. When your skin is infected, it is not able to function as your body's barrier from the world. You become much more sensitive to outside effects such as other diseases. Skin infections can and should be treated.
  
• Also, there is a claim that when your skin is infected, it itches more; I can certainly attest to that personally.
4. Erythroderma: cuts, scratches and rashes are spread over more than 80% of your body.
• Recognition: if the atopic is contained in certain areas, that's bad enough, but if it's all over your body, that is a sure sign that something is very wrong.
• Result: see number 1: you can't stop scratching. This is a vicious cycle that must be broken.
5. Flaky, scaly, peeling skin.
• Recognition: do you leave a trail of white powder behind you? Is your skin falling apart in certain places? If the skin is peeling off or flaking off, this is not good. The more intense the flaking, the worse.
• Result: your skin cannot heal, because it is involved in a continuous effort to grow back. The epidermis turns so thin that it breaks more easily, so scratching has an even more adverse effect.
  

If one or more of these signs are happening to you, run - don't walk - to your doctor. And remember, your physician is absolutely not enough for this. Go straight to the experts. It's worth your time and money to find a good doctor. Again, it's possible a combination of dermatologists and allergists will be needed.

Infectious Infections

Now here's a topic I've been itching to write (no pun intended) ever since I got into the hospital. Remember those warning signs I said I had missed along the road? Those huge blinking lights I just didn't see? Well, infections were by far the most flashy of them. (The sleepless nights were all the dark spots between blinks, evidently, but that's a story for a different post.) And the effect they can have on your skin, and your entire body, can be devastating.

Now, I knew about one kind of infections - the folliculitis infections. You know, those acne-like pimples that give such a satisfying pop. You (OK, I) just love to hate them. Turns out, that for atopic patients they are often caused by a bacteria fondly known as Staph. No, not the cute sister from Full House; it's short for staphylococcus aureus. Now, nearly everybody has these nice little bacteria. The skin has an innate defense mechanism against them, and they just don't bother most people. Except atopic patients. First of all, they evidently have more of it (see paper 1 below). For reasons I won't get into here*, atopic patients then react worse to this bacteria. Then, as I understand it, they often develop an allergy to the bacteria, which causes worse itching (surprise surprise). But the thing is, I didn't have folliculitis before the hospitalization, so I thought I was home free in that domain.

But I had no idea this was only one of the infection types possible. When I was hospitalized, in fact, my skin was harboring three different types of bacteria. Not in the skin follicles, but all around. Especially in the cuts and open wounds. A couple more types and they could've started a party! What party-poopers those doctors were, gosh, I tell you.

Now, these infected/inflamed areas were recognizable by the fluids they were exuding out of the cuts (lesions?) and the yellowish crust they kept developing. This website lists another sign I saw but didn't recognize: my lymph nodes were swollen. It also mentions fatigue, which is a funny one, since I wasn't sleeping at all, so how could I not be tired? [By the way, that same page lists several other potential complications of atopic - worth a read for those of us who think we know all there is to know about atopic.]

These infections can and should be treated. The accepted treatment is usually oral antibiotics, although a cream that combines antibiotics and cortisones can be applied locally.

Now, the infections should go away when the antibiotics has run its course, but they might come back. That's what mine did. About month after I left the hospital I was already full of infections. This time Staph had much less open wounds to go for, so it came out as the folliculitis, my friend from days of yore, and the itching followed close behind. I took another course of antibiotics. Staph went away, but came back even faster this time around; within three days I was noticeably infected. So now, I'm taking them for the third time, and agreed with the doctor to keep taking it in a lower dose as a prophylactic.

A final note - due to a super cool explanation*, the immuno-suppressants I'm taking should not be worsening these infections. In fact, once they are in full operation, I shouldn't be so susceptible to Staph.

Some extra bibliography:
* Prof B told me the article he is co-authoring about this topic hasn't been published yet; once it is, I'll post a link.
1. Abeck, Mempel (1998) . Staphylococcus aureus colonization in atopic dermatitis and its therapeutic implications. (abstract)
2. Ihsan Edan Al-saimary, Sundis S. Bakr, Khalil E. Al-Hamdi: Staphylococcus Aureus As A Causative Agent Of Atopic Dermatitis/ Eczema Syndrome (ADES ) And Its Theraputic Implications. (full paper)