[This is the second in a series of four pieces arising from my recent, and in some ways still ongoing, experience with an obscure and distressing skin affliction apparently extremely rare in adults. They’re not just about skin, though. Is anything ever really only about what it first appears to be?]
I have no medical expertise whatsoever, and throughout a long educational career avoided science whenever I could. Moreover, I’ve been extraordinarily lucky, compared to many other people my age, in the relative infrequency with which I have needed to consult internists and other medical specialists. So you could say I am somewhat inexperienced when it comes to medical and pharmaceutical matters. I’m emphasizing this up front because nothing that follows should be construed as medical advice. However, my own recent experience with a very particular kind of non-fatal disease raises certain questions you may want to think about yourself, in whatever way seems applicable, at present or in the future, to your own health situation.
That said, I am observant. And sentient. And now there’s the internet, a resource not available thirty years ago, where one can look up matters of interest to oneself. Which is not to say I don’t respect doctors. It seems to me that most medical professionals I’ve met really do want to help those who come to them, and do the best they can with the training they’ve received in medical school. Much of which is remarkable. The ability to identify and name medical problems, even those coming down the pike but not yet arrived, is extraordinary — thanks to the armament of sophisticated testing equipment which has been developed in the past fifty or sixty years. Surgeons have also become highly skilled at repairing and replacing broken and worn-out parts of the body. Valve replacements, joint replacements, cataract removal and replacement with artificial lenses. In addition, they know how to cut bad things out of you — such as many cancers, parts of colons so inflamed that they will kill you if not removed. And like that.
But when we reach pharmaceutical treatment, we’re on somewhat shakier ground. There are clearly successes. Some cancers in remission for ten or more years. Hypertension held in check, without perceptible side effect, by a combination of medications reached after trial and error. HIV-positive no longer necessarily a death sentence. But as Bill, my resident now-retired medical guru, used to tell his patients: medicine is not rocket science. Meaning — doctors don’t know everything. Or, in some cases, very much.
Nonetheless, when you feel truly awful, who do you go to? It’s almost instinctive: if you don’t know what’s wrong with you, go to someone who knows more. And so, when nearly four weeks ago, I felt weak and listless, and began ceaselessly to scratch first my scalp and then my chest and back, which both soon turned hot and dotted with bumpy itchy eruptions, I betook myself to the local dermatologist, who had a look, asked a few questions, and concluded, “eczema,” or possibly an “atopic dermatitis,” and wrote out a couple of prescriptions. To make me feel better, until it passes, he said. Why this, and why now? He shrugged. “It happens.”
The prescriptions were for fifteen days of oral prednisone (to be tapered off gradually, in five day increments), for another form of steroid in topical form (to be rubbed over the afflicted parts), and for an oral anti-histamine to take at night. He also mentioned Claritin, an over-the-counter anti-itch tablet, for daytime, because it’s not sleep inducing.
I had only once in my life broken out in what was either an “eczema” or “dermatitis” on my back and upper arms — in my early sixties, when I was enrobed in professional, emotional and practical stress of almost every kind you can think of, and my skin decided to protest. That was twenty years ago, and the dermatologist I consulted at the time prescribed an earlier version of a topical steroid, plus an anti-histamine, plus immersion in some kind of colloidal substance that coated the bathtub as well as me, so as to soothe the irritated skin and make the tub nearly impossible to clean. In two or three months, the condition went away and never came back — whether because of the “treatment” or because the problems in my life began slowly to resolve themselves, I don’t know. (Interestingly, the dermatologist had predicted that it would return every winter from then on.) Without speculating further on an issue of the past long since resolved, what I conclude from this is that in twenty years, nothing much has changed: steroids and anti-histamines for problems of the skin, about which little is apparently understood.
Except that now, twenty years later, the local dermatologist was wrong in his diagnosis. I began to turn boiled-lobster red as the hot, itchy eruptions ran together, and they also moved steadily downwards, in five or six days covering face, arms, tops of hands, lower torso front and back, legs and tops of feet (although I had already begun taking the oral prednisone, as well using the other stuff) — until all of me other than my palms and the soles of my feet were afflicted. Bill consulted the head of dermatology at Cornell-Weill in New York. He recognized it at once from its symptoms as described. It wasn’t eczema at all. It was apparently a “general viral exanthem.” An attack on the skin by a virus. It would eventually go away on its own. Should I continue with the prednisone? Yes: once you start, you shouldn’t stop until the prescribed course is finished. And it might do some good.
So let us consider prednisone, and other corticosteroids (of which prednisone is one) — the dermatologist’s go-to medicine for problems of skin. [The specific information in this post about corticosteroids comes from the Mayo Clinic’s website section on steroids.] Steroids are the kind of medication accompanied by the caution that “your doctor has determined the benefits of taking this medication outweigh the risks.” I have known two people for whom the benefits certainly outweighed the risks, but what was at issue was not skin. An old college friend was gasping for breath from asthma, and corticosteroids saved her life. They also made her, a formerly slim attractive woman, blow up (as my mother would have said) like a balloon. But if the choice is thin and dead or fat and alive, which would you choose? Similarly, one of the two cleaning ladies who visit us twice a month to keep our condo nice and clean is suffering from rheumatoid arthritis. She is in her early fifties and if it were not for steroids, she wouldn’t be able to function. She too is quite plumped out, although her daughter says she used to be a tiny petite little thing. There are also other future worse side effects of long-term continued use of whatever form of steroid she is taking, some of which she is aware of. But does she have a choice? I understand corticosteroids are further helpful in auto-immune diseases, such as lupus, where the immune system attacks the body’s own tissues.
But why is it prescribed for skin conditions? Because corticosteroids mimic the effects of hormones the body produces naturally in your adrenal glands. When prescribed in doses that exceed the body’s usual levels, corticosteroids suppress inflammation, and thereby can reduce the signs and symptoms of inflammatory conditions. Alas, they also suppress your immune system. Furthermore, after seven days of doses exceeding the body’s usual levels, the body shuts down its own production of anti-inflammatory hormones, so if you stop taking synthetic corticosteroids suddenly, you will be left without any protection at all against body invaders. The synthetics have to be tapered off gradually, so that your body picks up the cue that it’s time to start functioning normally again. Even when you’re no longer taking them, the Mayo Clinic warns that you may feel fatigue and lightheadedness for a while. Yes, I did, for almost a week after the last pill. And I’m not fully recovered yet, another week later.
Did it help at all? Presumably, it was intended to shorten the duration of my affliction — my body’s reaction to the virus — and lessen the inflammation (and therefore the severity of the “discomfort.”). A general viral exanthem is supposed to last ten to fourteen days. My inflamed and burning redness faded on the eighteenth day. Today, twenty-eight days after the initial outbreak, my legs — the last to suffer — are still slightly blotchy, and the rest of my skin, although looking normal again, still hypersensitive to touch and hyper-responsive to any form of gentle scratching. You could say that my age was a factor in delaying complete recovery within the predicted period. But you could certainly also say that the oral prednisone — the form that affects the entire body — did nothing to shorten the recovery period. Did it lessen the inflammation? As I don’t see how it could possibly have been worse (other than to enter the inside of my mouth, which it didn’t do), I answer this question with a clear negative. So much for the benefits.
Prednisone comes from the pharmacy accompanied by a multi-page printout of possible side effects. These are the ones I experienced, at first without knowing what was causing them, as I was too tired and confused to start researching this subject until about ten days ago: Confusion, dizziness, spinning sensation, dry mouth, dry lips, extreme thirst, extremely increased urination (up almost every hour at night), limp feeling, gradual weight gain (two and a half pounds in two weeks despite watching what I ate like a hawk), trouble thinking, trouble speaking — I was groping for words, me! — at times slightly blurred vision, cough, hoarseness, runny nose (without having a cold), shaky hands, chills. I paid less attention to all this than perhaps I should have because I was almost entirely focused instead on the misery of the burning skin, the rash and the itch. However, I will note, gratefully, that the side effects I didn’t get, perhaps because the course of treatment was relatively short, are even scarier — and include, of all things, skin rash! Again, I will concede that my reactions were likely exacerbated by age and my body’s inexperience with pharmaceutical substances that tinker with its chemistry. That, however, was a question of degree, and does not alter the risk/benefit analysis.
[One word about the oral anti-histamine, to be taken at night: It put me to sleep for about three hours until I woke myself up scratching, still groggy from medication. So it didn’t really work, either. As for the Claritin — ditto, and it didn’t take three hours to find out. Perhaps it helps with something really mild. Whatever that may be.]
As for the topical steroid ointment, to be applied at judicious intervals to the “afflicted” parts — even if it had helped, it was a greasy mess to apply (all over!) and precluded the wearing of anything but a long loose nightgown for the four days I kept with it. I did not keep with it after that because it soon became clear that applying it was counter-productive. It cooled things down for about five minutes once I had anointed all of myself, and then everything flared up again worse than before. I will not speculate as to why. Perhaps the inflammation was more determined than the ointment, and refused to be put down! I have subsequently found some evidence online that this can happen; topical steroids can begin by suppressing inflammation and end by further encouraging it. But as I have now packed all that away in a box labeled “Itch Stuff” (which I suppose will get thrown out in due time, but not quite yet), I will not think about it again, because there are now other things to think about.
Such as: What should I have done when all this began? My personal opinion is now that corticosteroids are bad news unless you are going to die without them. They are certainly bad news for skin. And especially as you get older. There are other ways of dealing with the extreme discomfort of skin rashes, whatever you call them and whatever caused them, that do not carry the heavy burden of side effects that accompany the questionable benefits of steroid application. (Cold packs wrapped in a towel or washcloth at night, lukewarm showers with Dead Sea salt soap, oatmeal baths, liberal and frequent application of Aloe Vera lotion and — even better — Calendula lotion, which is said to have some healing properties. Wear cotton against your skin; avoid wool and synthetics while you’re inflamed. There’s more, but I won’t continue, unless someone asks.) On the other hand, when you are truly afflicted in your skin, or anything else that requires medical attention, do you meekly submit to the pharmaceuticals offered on prescription, or do you dare challenge authority? Should you emulate Job’s wife, and disbelieve? Do you curse steroids, and set off on your own, at the risk of metaphorical death (that is, increased suffering)?
At a minimum, if I were doing it again, I would ask Dr. Dermatologist hard questions I didn’t ask. (Shame on me, the retired lawyer.) What would happen without the steroids? What are their side effects? Is this a good idea at my age? What is the least amount of “treatment” possible? What else can I do to relieve myself? And even — are you sure I have what you say I have, and how do you know that? And if it isn’t that, but something else entirely (such as a virus attacking the skin), would the steroids be any use at all?
Then when I had got past all that, and come to whatever decision I had made about following the medical directives I had been given and not looking elsewhere for relief — the fact that I had made it being important here — I would feel better about the consequences, since I had knowingly chosen them and had not had them imposed upon me because “doctor knows best.”
I would also resolve that if I could possibly help it, my immune system would not again so easily yield to viruses and other unseen evils afloat in the world. I would figure out what I could do to make whatever future I have left as safe and comfortable as possible. But that’s a subject for another day.