Steroid Withdrawal

Steroid Withdrawal

Mototsugu Fukaya, MD,
Department of Dermatology, National Nagoya Hospital, Japan

Introduction

The flow of treatment toward steroid withdrawal

1. Questioning and explanation
2. Taking pictures
3. How to go off steroids
4. Antisepsis and ophthalmological consultation
5. Topical medication other than steroid
6. Mental support
7. Admission

Introduction

"Steroid withdrawal therapy" for Atopic Dermatitis (AD) may be difficult to accept for dermatologists who have never experienced it.

Using serial color pictures, this book visually shows how AD patients improved following withdrawal from topical steroids by going through a process of severe flares (rebound phenomena*). This book also discusses the different types of flares which accompany withdrawal and which may be identified by their characteristic features.

I have written this book for the purpose of informing dermatologists who have had few experiences with steroid withdrawal. Topical steroid treatment for AD is effective when used for short-term use. When used long-term, however, it is frequent that flares (rebound phenomena) occur after cessation. I really hope that this book will be examined composedly by dermatologists as a data to rethink the role of topical steroid for AD treatment.

Lastly, I would like to show my respect and gratitude to all the patients for permitting the use of their pictures for the purpose of progress in AD treatment. Thank you very much.

* The phrase "rebound phenomenon" can be used to indicate a severe flare after discontinuation of steroid, or a flare aggravated by AD itself, or a flare caused by both. In the case where "rebound phenomenon" indicates a flare by AD itself, a severe flare after withdrawal is often called "withdrawal dermatitis". In this book, "rebound phenomenon" refers to both of the above, so a severe flare after discontinuation of steroid is often called "a flare (rebound) accompanied by withdrawal".

The flow of treatment toward steroid withdrawal

The efficiency of the withdrawal therapy for steroid dermatitis is based on my trial and error and has never been fully verified. It seems that the actual methods of so-called steroid withdrawal therapy vary among the doctors who advocate it. The following is a detailed description of my own methods and should be referred to when looking at the clinical process of each case in this book.

1. Questioning and explanation

At the first medical examination, I use a questionnaire to obtain thorough information regarding the patients' history.

Next, I ask them generally their purposes of coming to our hospital. Their needs may vary. Some patients come to consult me with questions regarding the continuous use of topical steroids. Others just drop by to get a prescription as they have already consented to be treated with topical steroids at another hospital. In the latter case, patients may become upset if you persistently explain the adverse effects of steroids to them. Consequently, it is better only to give warning, "This is a potent medication and it is possible that it does some harm, so if you feel any doubt, come to consult me again." It is not good to try to persuade them to withdraw from steroids.

In cases where a patient's need or aim is to withdraw from steroid, I first let them watch some videotapes on the adverse effects of steroid and rebound phenomenon. The use of video is very efficient in dealing with outpatients. Tapes about antiseptic treatment with povidone-iodine, sea bathing treatment, and psychotherapy are always available for outpatients, increasing clinical efficiency.

After showing the videotapes, I listen to patients' questions. Patients often want to know the actual process involved in steroid withdrawal so I prepare a series of pictures documenting the withdrawal process, as shown in this book. The reason I thought of creating this book was partly to use as a reference or atlas during consultations. When conducting steroid withdrawal treatment, showing the clinical process with serial pictures at the beginning can contribute further to the patients' understanding of steroid dermatitis.

2. Taking pictures

Next, I take pictures of patients*. It is important to arrange appropriate photographic conditions, such as objects, distance to the subject, and exposure.

* In dermatology, photographs are in medical necessity, but they are different from X-ray pictures since privacy issues may arise. I ask all patients for written permission to take their pictures when they are filling out their questionnaires.
Still, there are patients who may change their minds and request to have their pictures given back occasionally. I have had this experience twice. It is difficult to make a legal judgement on how to deal with this situation. In my cases, I agreed to "return" the pictures after having a consultation with the medical matter section and president of our hospital. But clinical photographs in dermatology can be treated as a part of clinical records, so I am not sure if "returning," elucidation aside, is proper.
Concerning the use of pictures in this book, I have formed an agreement in writing by mail in each case where a face or a trunk is shown. However, this is not the case where only hands and feet are concerned, as they are not thought to be in conflict with the issue of privacy.
In the future, when TV broadcasting of medical conference becomes common, the issue of protecting patients' portrait rights and privacy will have more importance. Especially in the field of dermatology, it is considered to be an urgent necessity to improve the law on this matter.

In cases of AD, taking pictures has great significance. First, it is the best means of keeping track of the lesions objectively. Secondly, it can work as a treatment (mental support) for the patients themselves. Steroid withdrawal usually takes several months to several years, so patients cannot remember how they were in the past and often start to say pessimistically, "It has been half a year since I started steroid withdrawal, but it is not getting better at all." On occasions like this, serial picture records of patients themselves (as shown in this book) can give them a more objective point of view regarding their true status. Therefore, taking pictures and then showing the process to patients works as the greatest mental support. The pictures in this book were taken for this purpose, and I have shown them from time to time to both inpatients and outpatients.

3. How to go off steroids

Regarding the detailed ways of withdrawal, especially how to go off the steroids a patient has been using, I don't make any definite indications. Patients choose themselves whether to stop suddenly ("cold turkey") or to gradually taper*. Steroid dermatitis is an addiction of the skin to medication, and withdrawing from it is comparable to quitting smoking or drinking, or quitting stimulants. The end is a consequent withdrawal, so the process is not a question.

* The doctors who conduct so-called "steroid withdrawal" may be misconceived as ordering patients to stop all the use of steroids immediately, but as far as I know, there are few doctors like this. I recognize that "steroid withdrawal" can be started only when we accept patients' hope that they do not want to use steroids.

It is not uncommon that a patient is attacked by such a severe flare that he/she re-applies steroid out of fear, but then soon after tries to stop using it again. By repeating this procedure, the patient eventually withdraws from steroids completely. There are more patients however, who stop using steroids on the first consultation and just bear it. Ultimately, it is the patient's choice, so if a patient refuses to be prescribed steroids again, I think we have no other option than to follow their wishes.

In cases where a patient has been on oral steroids and it is possible that adrenal dysfunction occurs, I confirm the reserve function by rapid ACTH test at outpatient treatment. If adrenal dysfunction is apparent, I of course treat them with the minimum replenishment (no patients have refused this), and then conduct withdrawal gradually with confirmation of the improvement of adrenal function.

I ask patients to keep a diary. Every time they use steroids, they write so. In other words, I let them withdraw on their own by controlling themselves.

4. Antisepsis and ophthalmological consultation

Upon withdrawal, I recommend antiseptics such as povidone-iodine to almost all cases at the first consultation. Antisepsis may be helpful during the rebound period by preventing secondary infection of the epidermis. Evaluation of the actual population of staphylococcus aureus on the epidermis can be conducted by the contact-plate technique using mannitol salt agar with egg yolk (this is not the only form of measurement but may be useful as a standard)*. Still, antiseptics may act as an irritant. There is an opinion that antisepsis is not recommendable for fear of irritation. Also, it is important to remember that antisepsis can never suppress the influence of rebound itself. I do not eagerly recommend antiseptics to those who already have a custom of disinfecting by electrolized water, or to children in too much pain to take a bath. I also recommend that patients consult ophthalmology especially when the inflammation is severe on the face.

* In the text, staphylococcus aureus > 100 colonies (neck), for instance, means that more than 100 colonies of staphylococcus aureus were detected when a round plate of 3.5 cm diameter was stamped on the neck and was cultivated.

Antibiotics are used as little as possible for fear of producing resistant bacteria such as MRSA transformed from epidermal staphylococcus aureus. Infection of MRSA is not much of a problem for the patients themselves, but in case they need to be hospitalized, they are disadvantageously forced to isolation, in prevention from hospital infection. Especially after being prescribed with antibiotics by another doctor for a cold, epidermal bacteria is often transformed to MRSA*. Therefore, use of antibiotics is limited to those cases with apparent folliculitis or an abscess causing feverishness or an increase in leukocytes.

* It seems that epidermal MRSA, if not treated again with antibiotics, is naturally replaced by MSSA, or epidermal staphylococus, within several weeks to a few months.
Another opinion is that using antibiotics doesn't necessarily produce MRSA, and that it can be said that MRSA has prevailed and been present since more than ten years ago.

Ophthalmological complications are an important problem. Dermatologists should recommend an ophthalmological examination especially in cases where there is a severe facial eruption. Patients can not escape from steroid addiction if they are reluctant to withdraw due to the possible high risk of ophthalmological complications that may accompany a severe facial flare. Even with the continuous use of topical steroids, it is not rare for a cataract or a retinal detachment to occur. Continuing to use topical steroids and postponing the problem may produce an even more severe rebound, increasing the risks of ophthalmological complications. At the moment, what is best is not certain yet. I believe the most we can do is explain* all the facts and recommend that they have an ophthalmological exam regularly.

* Only telling patients not to pat or rub will not stop them from doing so. Sometimes this kind of "order" can even work adversely. It is better to explain that physical stimuli (patting, rubbing) can be a trigger and to do so persistently so that they can refrain from it by themselves.

5. Topical medication other than steroid

I prescribe white petrolatum, zinc oxide ointment, or an equal mixture of the two for external use or as emollients. In some cases I prescribe nothing at all*, however, because even these applications can work as stimulants to the skin during the rebound period, like the disinfectant povidone-iodine. So I have recently advised to patients "Apply the least amount for movement. Never apply for cure."

* There are some patients who improve after developing slight rebound-like aggravation following cessation of emollients such as white petrolatum, when recovery is delayed though some improvement is obtained after rebound. It is so called "rebound induced by white petrolatum" or "dry and rough therapy". In many cases, however, patients become immovable if they don't apply anything during the withdrawal period. As they can generally stop white petrolatum naturally as recovery progresses, I usually prescribe external applications mentioned above.

When patients themselves prefer olive oil, nonsteroidal anti-inflammatory medications and urea-containing medications from their past experiences, I prescribe them according to their requests, though I have not experienced that such external medications were of any help for decreasing the severity or duration of rebound. The skin during rebound seems to be hypersensitive and I feel certain that no external application at all is the least risky for the skin.

Use of soap and shampoo is not recommended because they wash out natural wax on the skin. I explain that disinfectants are more effective for sanitary purposes only*.

* Some dermatologists recommend bathing and use of soap rather than the use of disinfectants.

6.Mental support

Although most dermatologists are greatly concerned with the methods of skin care as mentioned above, mental support is far more important when consulting patients on withdrawal from steroids.

Doctors need skill, perseverance, and tolerance. Many patients may show distrust, anger, or uneasiness toward medication. Therefore, doctors need to show their confidence in the medication.The doctor must clarify that he would never force the use of steroids and should ease patients by showing that he is well versed in the usual course of withdrawal, as shown in this book.

Patients before withdrawal, especially patients* who have previously tried to withdraw but resumed steroid use due to the severity of the rebound, have a strong fear of the rebound phenomena. Any pressure such as "You should withdraw" by a doctor may work adversely. In such cases, intervening in the patient's decision should be avoided because the patient may have negative feelings toward the doctor. It is better for the doctor to maintain the position that he can see patients with either wish of withdrawal or continuance of steroids. The decisions of when and how to withdraw from steroids should be left to the patient because the success ratio of withdrawal becomes higher as a result.

* Patients who have the experience of dropping out from steroid withdrawal often have a strong fear of attempting withdrawal again, though they also have doubt regarding the continuous use of steroid. Such patients may show anger or may even weep if the doctor directly explains the necessity of withdrawal from steroids. They seem to feel guilty for hesitating to withdraw. Occasionally these patients request that I prescribe topical steroids of a very strong class. They relax momentarily if I prescribe the strong steroids as if there is no problem. Such a reaction seems to reassure them that they can resume applying steroids and consult me at any time. A few patients begin to withdraw after such tactics.

After such an explanation, about eight to nine of ten patients will choose to withdraw from steroids. I am never comfortable seeing them suffer from rebound phenomena. Patients will come to me, complain of agony, refuse to resume steroid use, and go home. Sedatives or antihistamines are of almost no use. Patients will even complain of the uselessness of these medications.

Patients frequently answer negatively and pessimistically against every medication or treatment which I recommend. It seems almost as if they are provoking me and trying to make me angry. The truth is, they merely want me to deny the uneasiness arising within themselves.

Thus, it is very important to assure the patient that he never fails to recover if he holds on. The doctor must assure the patient with heartfelt confidence because a textbook response never wins sympathy. He must smile with the intention that he will be with the patient until the end and never desert him regardless of any difficulties. I suppose dozens of experiences are needed by the doctor before he can respond in such a way.
I would be very satisfied if this book could help doctors achieve such a response sooner.

When the doctor, induced by the patient's uneasiness, reflects any doubt in his attitude that the patient really can withdraw from steroids, there may be unfortunate consequences. The patient will cease to complain any longer, look with a wondering face and sorrowful eyes at the doctor, and he/she will never come again to the doctor.

I am sometimes asked by fellow dermatologists "What is the success ratio of the steroid withdrawal therapy you provide?" The success ratio depends wholly upon the capacity and skill of the doctor's mental support. The patient never fails to withdraw from steroids if he does not drop out and comes to the doctor repeatedly. For me, it probably was five to six per ten at the beginning and is now eight per ten. I have once asked the nurse in the outpatient department "What is the ratio of the improvement with my added experience?" She answered "About eight to ten" just like I guessed. Considering that mental support is the main part of the therapy, I guess there is no doctor with a 100 % success ratio because a doctor cannot be suited to everyone.

In cases where patients are babies or children, mental support to their mothers* is helpful. Some doctors might say the mothers are too nervous. I think that they are not nervous but rather uneasy. Mental support to a mother often works as therapy for the young patient as well because the mother's uneasiness often influences the mind of the young patient.

* For example, I sometimes say while admiring a baby patient "He is handsome" or "She is pretty" in front of the mother. It seems to make the mother happy and the consultation becomes smoother. Admiring the baby encourages the mother to focus on the beauty of her baby instead of on the eczema.
Also, giving compliments to a child with a scaly, rough face like "You are originally a fair girl resembling your mother. You must become a beauty" pleasantly surprises the child. The child might glance at the mother and see her mother's reaction. Being admired in front of her mother evokes self-confidence.
Psychologically, such a method is known as short-term therapy. This means the psychological intervention was effectively performed within a short time period opposed to psychoanalysis which usually requires a long time period.
Such psychological interventions should be performed with as much delicacy as possible, so as not to be noticed even by the recipient. Scolding the patient's mother by a doctor in front of the patient causes adverse effects from the viewpoint of mental support, regardless of the reason.
The child sees the scolded mother and suffers from self-reproach because the child feels the cause is him/herself.

The greatest medication during steroid withdrawal is certainly a doctor's words and attitude. If you think "It seems to be very easy only to observe a patient without prescribing any medication," you would misunderstand. To see a patient without prescribing any medication is very difficult and requires skills like a craftsman. Patients with distrust in medicine who have been driven into a corner need a doctor who they can trust and rely upon again.

When a patient chooses to resume steroids because of the severity of the rebound or for maintaining social activities, special delicacy is needed by the doctor. The patient is suffering from not only physical damage of the rebound but also psychological damage of failure. In such a case, I usually encourage him/her by saying, " It is a strategic evacuation. Three steps forward and two steps backward make one step forward. It is no problem to resume steroids temporarily. Your anguish at present is really a slight problem in your long life. Once you step backward, you can try again under better physical and mental conditions." I never say "If you select to resume using steroids, you should not come to me and go to another doctor." Such a phrase evokes a desperate feeling from the patient, the same as (or more than) the phrase "If you reject to use steroid, I can not see you." Such an attitude will decrease the final withdrawal ratio as a result.

7.Admission

Doctors who treat patients at withdrawal should have many options besides medication. Hospital admission is one important option to consider. In my hospital, about ten patients are usually admitted, though one should describe it not as admission but rather as recuperation. The reason why such an admission is useful is mainly because the patients can be helped mentally by encountering fellow sufferers. Mental support can be performed among the patients themselves more effectively than by a single doctor*.

* During the rebound period, patients often develop erythroderma and become immovable. Patients may be unable to prepare meals or wash clothes. They often dislike seeing other people and avoid going out even to shop. Some patients who live alone avoid starvation by using a delivery service. Other patients who live with their families are often irritated, leading to conflicts among family members, and causing miserable situations. Even the family who at first understands the necessity of withdrawal and encourages the patient may become gradually disheartened by the uneasiness and pessimism of the patient.
The patients seem to benefit most by living together with other patients who are at various stages of withdrawal. They are encouraged by seeing other patients whose severity of withdrawal has already subsided and are ready to discharge. Patients are also able to assess themselves more objectively in the presence of others who are at earlier and more severe stages. Thus they are liberated from uneasiness amplified by lonely confinement.

I introduce a newly admitted patient to the other patients saying, "A new comrade has come." When I do my rounds, I try to create a light-hearted and optimistic atmosphere by talking and joking as well.

* Most patients at withdrawal do not want to be prescribed anything. Many outpatients will go home without any medication or laboratory examinations. They often say "I become more relaxed after consulting you and hearing you say that I am doing well." They even become happy and say, "I do not need a prescription today again." It is this style of consultation which should lead one to rethink the patient-doctor relationship. As this type of therapy may not be economically efficient for the doctor, some strategic changes should be made such as enrolling into political medical subjects of national hospital or establishment of reward for psychotherapy in the dermatological consultation.

The second benefit of admission for patients with atopic dermatitis is that one can judge the influence of environmental antigens such as house-dust-mites. I call this "admission for the purpose of environmental escape". For patients with steroid dermopathy, the severity relies only upon whether they are using steroids or not. So it becomes difficult to determine the original aggravating factors. However, after withdrawal from steroids, the influence of aggravating factors will often cause such patients to relapse. This is especially likely to occur in cases marked by seasonal aggravation, where an environmental factor is considered to be the cause. These patients may recover within one or two weeks after admission during the aggravating season. After the patient is discharged, if a relapse occurs, one can presume the aggravating factor exists in the difference between the patient's house and the hospital. This allows the patient to begin solving the problem by him/herself.

After withdrawal from steroids, however, the skin seems to remain hypersensitive for a period of time. Relapse often occurs in several days after discharge by those patients whose rebound after steroid withdrawal subsided in several months. Those patients return to the hospital for a few more weeks until their flares subside and then they try to be discharged again. They can generally leave the hospital safely the second time.

One negative aspect of admission is the high rate of infection within hospitals*. Folliculitis by streptococcus may be epidemic among patients with AD just like impetigo contagiosa in children. Non-atopic inpatients are not affected. I have experienced this situation once in our hospital. The strain was considered to be the same because the pattern of resistance to antibiotics coincided. I have heard of similar situations from other hospitals as well.

The streptococcus was not detected in such places as the bathroom or sickroom in the ward. The trouble ended in several months though the rumor spread among outpatients that pustules and pyrexia seem to be developed after admission. Antibiotics worked within several days but they easily induced MRSA at the same time. The dilemma frustrated me very much.

*The situation was reported to the infection control committee of our hospital and countermeasures such as sterilization of the bathroom and sickroom were taken.