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...

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.

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.

Refreshing treatments

So as of yesterday I started refreshing my day-to-day treatments. In fact, when it comes to antihistamines for atopic, doctors recommend you change your medication every so often as it stops being effective. Something about the receptors becoming blocked. Later you can switch back - the block isn't permanent. I forgot about this trick for a while there, but around March I went to an allergist/immunologist that reminded me of this, Dr. BZ. So I switched from Aerius(mornings) and Zyllergy(nights) to Profiten twice daily.

[Side note: some people get drowsy or sleepy from the antihistamines. Not me. Doesn't do a thing. Or like my mom would tell the doctors when I was a kid: "I wish it made her sleep".]

Seeing as my atopic's been getting worse lately, my mom reminded me of the switching scheme again just the other day. So now I'm back to the old regime: Aerius mornings, Zyllergy (aka Histazine) nights.

Plus, my boyfriend (smart guy) reminded me of a more natural tack that I had taken in the past and we agreed helped - Evening Primrose Oil. This natural dietary supplement is supposed to make your skin healthier and more moist. And indeed, I must say that last year when I stopped taking it I felt a marked decrease in the skin moisture, so I went back to it. For some odd reason I stopped taking it again later in the year and forgot about it completely. Well, now I'm back on it.

All this, by the way, is in addition to:

• the homeopathic remedy that I've been taking for the past half year;
• the moisturizing creams I use constantly; and
• the oil and/or oat baths I take twice a day.

Sometimes it's hard to know what helps and what harms. But I do my best to figure that out as best I can.

Edit (29.9.07) : looking up drugs for this post, it turns out that Dr. BZ was pretty far off the mark in the actual recommendation. Profiten is more of an asthma prevention drug than a generic antihistamine. So even if it's a good idea to switch, don't be so sure that profiten is the drug of choice for atopic dermatitis.