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...

Immunosuppressants for Atopic Dermatitis

I talked about treatments and what constitutes treatment. Now, as the wise Rafiki said, "it is time". Time to talk about immunosuppressants for Atopic, what they are and what they do, the dangers and complications, and (soon) the different types available to you.

Immunosuppressants are drugs that an expert dermatologist can prescribe for you. Their basic effect is, well, what their name says: they suppress your immune system. [As an aside, their main usage is "in organ transplant surgery to prevent organ rejection" (taken from Answers.com) and sometimes they are originally chemotherapeutic agents].

Don't try this "at home", i.e. without the benefit of an expert. Do not, I repeat, do not count on your physician to cut it. He or she may know you best but they do not know the effects of these drugs best. Let the experts do their job; dermatologists spent four or five extra years studying this, and they treat cases like you all the time. And definitely do not take them without medical advice at all! Don't even think about it.

Why could this be good for you? Basically, your immune system working over-hard, "panicking" and fighting things that aren't really dangerous to you (namely, allergens). This useless fight is causing you to itch, scratch, etc. Therefore, telling your system to "cool it" means it should stop fighting so hard. So it should cause an improvement in your situation. Several immunosuppressants have been consistently shown to cause improvement in many cases of atopic.

Why could this be bad for you? Well, immunosuppressants are heavy artillery. There are several effects, first and foremost - a higher sensitivity to contagious diseases. You should be careful not to come in too close contact with too many people, especially if you know they're sick. What's more, there can be interference with all sorts of normal bodily functions. During the time you're taking them, you should be under nearly constant "surveillance": complete blood count (CBC - the most basic blood test) and blood tests for liver and kidney functions, as well as blood pressure. The exact battery of tests you should undergo varies with the precise medication.

What else should you know?

Using immunosuppressants should clear up your atopic symptoms, including infections (via a complex mechanism that I don't entirely understand), but there is a possibility that you will be more vulnerable to skin infections, such as folliculitis, in which case you may need to add antibiotics as a backup player (or switch to a different immunosuppressant). Consult your doctor!

Note for the sexually active -

• females: for most of these drugs (if not all), you need to avoid pregnancy during the whole period of taking the medicine, and potentially for awhile after you stop. Plus, some of these drugs may reduce the efficiency of The Pill, so make sure you talk to your doctor about this, and add alternative contraception (condoms or otherwise).
• males: mostly there should be no problem, but double-check. At least one of these drugs (methotrexate) may cause birth defects in an unborn child if your partner gets pregnant. Best to be on the safe side and ask your doctor.
  

So, when should you take them?

First of all, it's important to note that it's not totally your decision to make. An expert doctor (usually a dermatologist) will decide whether or not your situation and specific condition merits this kind of treatment. Of course, you do have some choice here - you can (a) suggest it in case your doctor doesn't, or (b) refuse to take it if your doctor does suggest it.

But let's take a look at the criteria. An expert dermatologist may look at:

• How widespread your atopic is (are you erythrodermic?)
• How resistant your case is (did you respond to other treatment? topical cortisons? maybe UV?)
• How badly is atopic affecting your life (how much is it interfering with your day-to-day life?)
• How do your blood tests look before you start the drug (as mentioned earlier - are liver and kidney functions OK?)
  
• And potentially other things... see warning signs, and remember, I'm no doctor.

A separate post is coming up with the different types of drugs available to you.

An Ounce of Prevention

The following can be considered preventive measures, and may be very helpful a such, as per the adage that "an ounce of prevention is worth a pound of cure". Still, they do not constitute a treatment, and once your situation gets real bad, they may not cut it by themselves.

1. Moisture, moisture, moisture. Oi, moisture. Dry skin is the enemy of atopics worldwide. Take a daily bath with oils, put moisture-loving creams on, the whole nine yards. Other methods may help (primrose oil AKA Omega 6 is claimed by some to be a good skin-moisture helper).
   
2. Antihistamines. Lots of atopics are reacting to allergens, so do your body some good by helping it deal with the allergic reactions (histamine cells).
   
3. Avoidance. Find out what you're allergic and/or sensitive to (those are two different things, by the way) and avoid it. Minimizing dust for example may be a huge factor for people allergic to dust. Contact with chemical agents can make life worse (hire a cleaning lady if you can afford it). Choose your clothes with care. Etc. I may write more about this someday.
   
4. Climate control. Rapid temperature changes make life difficult. If you live in a cold place, dress warmly and cover up as many areas as you can when stepping outside. Keep a relatively moist environment in the winter (AC for heating is bad; radiators are much better). For the summer, try not to sweat because sweating induces itching (AC is great then). Air pollution can make matters worse. In Israel, for example, there are dusty days ("ovech" in Hebrew); try to stay indoors in those days.
   
5. Stay cool in the other sense as well. Stress, anger and emotional pressure can worsen the situation. I know it sounds impossible, but try to keep your cool. Different approaches on this one, including my own varied attempts, but meditation and self-hypnosis can help to extend calm further. Work out your issues if you have any. See a shrink if you need one. Whatever works for you.
   
6. Keep your hands and your mind busy... I don't mean that you need to be a workaholic (or any other -holic either). But anything that makes you feel good and keeps you busy enough to forget scratching, is worth doing. Hand-engaging hobbies that you love may serve a double purpose by keeping both your mind and your hands off scratching.
   

Again, I want to stress that these methods are not likely to improve your situation once it is bad. But apply them at all times and you may just help yourself - if not totally preventing, they will certainly slow down any potential deterioration in your situation and possibly keep status quo.

Still, don't forget that when things get bad, you need to actually treat the situation. Here's a reminder for how to recognize things are going bad.

What constitutes a treatment

So, what constitutes a treatment for Atopic Dermatitis - according to conventional medicine, anyway?

According to Dr. H (dermatologist), here's what can constitute a treatment (I'm pretty sure he meant for medium to severe atopic):

1. Topical Steroids. Topical means on the spot, or in plain English, creams spread on your skin. in order to actually treat the atopic, they need to have steroids (cortisons) in them.
   
2. Immunosuppressants. These agents may calm your atopic dermatitis by way of lowering the resistance of your entire immune system.
   
3. Phototherapy - certain types of UV rays may be helpful for some cases of atopic dermatitis.
   

Now, each of these treatments has its own dangers and complications, I won't go into details right now. Let's just say, "don't try this at home". Consult an expert for the right options for you.

In a future post I'll write, accordingly, what doesn't constitute an actual treatment (but may well act as prevention).

One word of caution, according to Prof. B. (dermatologist): Systemic steroids (i.e. taken through the mouth, injected, etc.) should NOT be used for atopic, as they tend to cause a rebound reaction once the drug is discontinued. There is evidently a major difference in opinion among doctors on this point. Allergists and physicians may tend to recommend this type of treatment because it is effective for asthma and so assume it will work for atopic as well. Personally, I've experienced the rebound effect in both times I've taken systemic steroids. Readers beware.

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)

Crème de la Crème

One thing that did not come as a surprise to me at the hospital was the insistence on moisturizing. I had been taking baths and putting creams on my skin for ages. However, the precise nature of these was slightly different than I was used to, especially regarding the creams.

The treatment began with very cortisone-heavy creams. However, as the days passed and my skin cleared up, these were gradually decreased - lower dosages, smaller areas, etc. The main treatment, they explained, will be the immuno-suppressants... and that I gotta keep up the moisture.

So, which creams? Up until now I had been using Vanicream for years. In the hospital they used Eucerin, but not the store-brand one. They mix it up with... olive oil. Precise measurements to follow soon. They recommended I keep using it, and I intend to for now. It leaves the skin feeling quite smooth.

Oh, one more thing. They recommend keeping the creams refrigerated. The idea, as I understand it, is that when you put on the cold cream it has a further soothing effect. Just don't keep it too cold.

And how should you spread the cream? With the palms of your hands, not your fingers. From top to bottom, in the direction of the hair growth, to avoid folliculitis (inflammation of the hair roots).

Baths will come in a separate post.

Edit: with cortisones you're supposed to spread a thin layer, but with the moisturizers, don't be stingy. Other than cost, there's practically no reason not to apply liberally. Just don't forget to use the fragrance-free, paraben-free, everything-free version.

Things that were, and things yet to come

Phew. I haven't been very active lately, but there were some good reasons for that. So, I am going to tell you a little bit about what has been going on. I'm also going to mention a lot of things that will receive my fullest attention in separate posts. I want to do this right, so I will devote a post to any topic that seems relevant and not go into too many details here. So to avoid repeating myself a lot, I'll write "TBE" - to be explained - wherever I want to write more later. [Edit (6.4.08): these TBE's are now links to the relevant posts, wherever I actually wrote them.]

Around the last time I posted, my situation was already pretty severe, and it was getting worse by the day. I somehow managed to function although I was barely sleeping at nights, scratching constantly and so on.
My situation can be likened to the proverbial boiling frog. For nearly two years my situation was going from bad to worse, with only temporary remissions brought upon by use of cortisones in different formats. I will write a separate post about all the warning signs I missed, should have seen, or didn't know existed... TBE#1. But for now suffice it to say that by the beginning of August, I was near the boiling point.
In hindsight, my situation was actually dangerous (TBE [6.4.08 - due to infections and sleepless nights]). To make a long story short, I came to an appointment with an allergist. As I was waiting for him to show up, the nurses told me in no uncertain terms that they think I should go to the emergency room - a statement which managed to dull the surprise when the allergist took one look at me and said I needed hospitalization. Most importantly he said this should be seeing a dermatologist - that he as an allergist couldn't do enough for me (TBE).
So the very next morning I showed up in the Rambam hospital in Haifa, which evidently hosts one of Israel's best skin departments (if not the best one). I came to the upstairs clinic first, and met with the department head. He was also very clear on the fact that I needed to be hospitalized, and so I was admitted to the hospital.
I spent the following ten days there, and received all-around treatment that has turned my skin upside down, inside-out and altogether amazingly healthy. To me the best part of this was that I received no systemic cortisones but rather a combination of other treatments (TBE), the most important of which being an immuno-suppressive (TBE). Within two days of being there my skin was nearly entirely cleared up. I was still itching, though, and not sleeping at nights; this improved later on (TBE). Finally I was discharged home, and I will continue some of the treatments at home while others are over (TBE...).

With so many things yet to be explained, I want to wrap up this post now with a note of cautious optimism. Right now, my skin is in a wonderful condition, and I intend to do everything in my power to help it stay this way. To this end, and also to help other people be healthier, I plan to post a series of short posts on specific topics that I encountered immediately before and during the hospitalization. I hope that I can follow through with these ambitions.