Hey you, yes, you.
If you feel it's time to stop reading about atopic and start doing something about it...
If you're sick (in more than one sense) of feeling alone with your disease and you want to meet others with the same problem...
If you're a parent of a child that suffers from atopic dermatitis and you think there should be more being done...
... now's your big chance.
We are now in the preliminary stages of forming a group for atopic dermatitis. With the help of "Etza" (=literally "Advice"), the Israeli organization for Self and Mutual Help, two other atopic patients and I are forming the initial core of this group. We will be meeting, hopefully before Passover, to set our initial goals and priorities for this group.
You are very welcome to join us, whether you are an atopic patient yourself, or the parent of one. If you want to join us and influence the direction of this group, now's the time. (You can always join later, but now is better! :-)
Send me a mail: shiri.dori AT gmail.com
We would love to have you with us.
Sunday, April 6, 2008
Urk! Urea/Uric Acid
I don't do this often, but some things have just got to be stated.
If you have Atopic Dermatitis and you're looking for a moisturizer, here's a really important tip. Make sure the moisturizer you're about to buy (and possibly pay ridiculous sums of money for), does not, I repeat does not contain Urea, or Uric Acid.
I repeat once again. Be extremely careful with products with Urea or Uric Acid. If possible, just don't use them. (Those two are not quite the same thing; but they have the same effect anyhow.)
Why such an outright negative reaction, you ask?
The answer is simple - painful experience.
Many pharmacists hear about your dry skin and recommend products that contain Uric Acid, or Urea (I'll just say Urea from now on). Even (unknowing) doctors will sometimes recommend such products. They do so because Urea, which is actually a product of urine, can do wonders for extremely dry or chapped skin.
What they (and you) may not realize is that Urea may have a devastating effect on your atopic-sore skin. A small dab of a cream containing Urea on the skin can send an atopic patient into a small, personal hell. It creates a burning sensation (sometimes very extreme) in the area that may last for several minutes. And due to the slightly delayed action of the Urea on the skin, you may manage to cover large areas with the cream before realizing the pain involved.
As far as I understand it, this burning sensation is caused when the Uric Acid meets the atopic skin, that is not just dry, but actually contains dozens of miniature cracks that may not be visible, as well as open wounds, cuts, and lesions. For all these, the Uric acid acts like alcohol or saltwater on an open wound - it burns, with a vengeance.
So be cautioned - read the label well before starting a new cream.
And with all new products for your skin, test them on your skin in a small area first, see how it reacts (even overnight), and only then move on to larger areas.
If you have Atopic Dermatitis and you're looking for a moisturizer, here's a really important tip. Make sure the moisturizer you're about to buy (and possibly pay ridiculous sums of money for), does not, I repeat does not contain Urea, or Uric Acid.
I repeat once again. Be extremely careful with products with Urea or Uric Acid. If possible, just don't use them. (Those two are not quite the same thing; but they have the same effect anyhow.)
Why such an outright negative reaction, you ask?
The answer is simple - painful experience.
Many pharmacists hear about your dry skin and recommend products that contain Uric Acid, or Urea (I'll just say Urea from now on). Even (unknowing) doctors will sometimes recommend such products. They do so because Urea, which is actually a product of urine, can do wonders for extremely dry or chapped skin.
What they (and you) may not realize is that Urea may have a devastating effect on your atopic-sore skin. A small dab of a cream containing Urea on the skin can send an atopic patient into a small, personal hell. It creates a burning sensation (sometimes very extreme) in the area that may last for several minutes. And due to the slightly delayed action of the Urea on the skin, you may manage to cover large areas with the cream before realizing the pain involved.
As far as I understand it, this burning sensation is caused when the Uric Acid meets the atopic skin, that is not just dry, but actually contains dozens of miniature cracks that may not be visible, as well as open wounds, cuts, and lesions. For all these, the Uric acid acts like alcohol or saltwater on an open wound - it burns, with a vengeance.
So be cautioned - read the label well before starting a new cream.
And with all new products for your skin, test them on your skin in a small area first, see how it reacts (even overnight), and only then move on to larger areas.
Sunday, March 23, 2008
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:
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...
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 -
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:
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.
Tuesday, March 4, 2008
And I'm off.
Hospital, take 2.
This time I'm entering in a much better situation, relative to last time.
Still feel pretty awful, though.
It was just recommended this time, not required really. But the situation was going downhill so quickly I felt it would be better to listen to the good doctor.
And I'm off.
This time I'm entering in a much better situation, relative to last time.
Still feel pretty awful, though.
It was just recommended this time, not required really. But the situation was going downhill so quickly I felt it would be better to listen to the good doctor.
And I'm off.
Friday, January 25, 2008
ManiCure
Treat your nails well, and they will treat you well.
What I mean by that is simply, that the better treated your nails are, the less harm your scratching will do. So what's an atopic's maniCure? Short and sweet.
Keep your nails cut super-short. File them if you need to, make sure there are no jagged edges to break the skin's surface.
Oh, and especially disregard the conventional wisdom about cutting your nails straight to avoid ingrowing nails. That may be true for normal people but you have atopic, dammit! In my humble opinion, you should cut your nails as round as they can be. You should be cutting them so often, anyways, that you'll avoid ingrowing nails because they won't manage to grow that far.
So if you scratched so hard that it's bleeding, treat your skin; but also, treat your nails.
This was another post brought to you by "An Ounce of Prevention is worth a Pound of Cure". Despite its misleading name, maniCure is prevention, not cure.
What I mean by that is simply, that the better treated your nails are, the less harm your scratching will do. So what's an atopic's maniCure? Short and sweet.
Keep your nails cut super-short. File them if you need to, make sure there are no jagged edges to break the skin's surface.
Oh, and especially disregard the conventional wisdom about cutting your nails straight to avoid ingrowing nails. That may be true for normal people but you have atopic, dammit! In my humble opinion, you should cut your nails as round as they can be. You should be cutting them so often, anyways, that you'll avoid ingrowing nails because they won't manage to grow that far.
So if you scratched so hard that it's bleeding, treat your skin; but also, treat your nails.
This was another post brought to you by "An Ounce of Prevention is worth a Pound of Cure". Despite its misleading name, maniCure is prevention, not cure.
Saturday, January 19, 2008
Comment on affected body areas
And if you need further convincing, here's another reason why an ounce of prevention is worth a pound of cure.
When things get bad, for any reason, you may make the following discovery the hard way (as I have myself many times). Areas of your body that were previously totally clean and unaffected may react and become part of your general scratching repertoire. And once affected, they will rarely truly stop being part of the sensitive skin.
Example: when I started with braces, I had to use a neck brace (back in the day when they needed those). The skin on the back of my neck started itching, and has not really stopped since. Before this episode it had never been itchy at all.
Similar situations have happened with my scalp, the back of my hands, the tops of my feet and even the palms of my hand and my fingers (when the shit really hit the fan, if you'll excuse my French). Some of these areas go back to normal at some points in time but then flare up again and again at other times.
So watch out for the signs. And take care of yourself even when things are looking up.
When things get bad, for any reason, you may make the following discovery the hard way (as I have myself many times). Areas of your body that were previously totally clean and unaffected may react and become part of your general scratching repertoire. And once affected, they will rarely truly stop being part of the sensitive skin.
Example: when I started with braces, I had to use a neck brace (back in the day when they needed those). The skin on the back of my neck started itching, and has not really stopped since. Before this episode it had never been itchy at all.
Similar situations have happened with my scalp, the back of my hands, the tops of my feet and even the palms of my hand and my fingers (when the shit really hit the fan, if you'll excuse my French). Some of these areas go back to normal at some points in time but then flare up again and again at other times.
So watch out for the signs. And take care of yourself even when things are looking up.
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.
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.
- 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).
- Antihistamines. Lots of atopics are reacting to allergens, so do your body some good by helping it deal with the allergic reactions (histamine cells).
- 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.
- 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.
- 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.
- 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.
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.
Wednesday, January 9, 2008
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):
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.
According to Dr. H (dermatologist), here's what can constitute a treatment (I'm pretty sure he meant for medium to severe atopic):
- 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.
- Immunosuppressants. These agents may calm your atopic dermatitis by way of lowering the resistance of your entire immune system.
- Phototherapy - certain types of UV rays may be helpful for some cases of atopic dermatitis.
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.
poem.
Scratching
looks like red ink
maybe I just spilled a blob -
no, NO! Stop, stop it
stop hurting yourself,
oww, I can't,
go wash this off,
cut your nails,
look what you did.
Copyright (C) 2000 by Shiri Dori
.
.
.
...Above is a poem I wrote several years ago. The odd thing is, my atopic was totally off at the time, but some triggers of extremely red color caused these deeply entrenched memories to jump to the surface and cause a very strong reaction (to me, anyway). I stumbled upon it today and decided it's worth sharing. I'll write more about scratching one of these days, but for now this is all I can say.
looks like red ink
maybe I just spilled a blob -
no, NO! Stop, stop it
stop hurting yourself,
oww, I can't,
go wash this off,
cut your nails,
look what you did.
Copyright (C) 2000 by Shiri Dori
.
.
.
...Above is a poem I wrote several years ago. The odd thing is, my atopic was totally off at the time, but some triggers of extremely red color caused these deeply entrenched memories to jump to the surface and cause a very strong reaction (to me, anyway). I stumbled upon it today and decided it's worth sharing. I'll write more about scratching one of these days, but for now this is all I can say.
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