Michael A. Jenike, MD
Professor of Psychiatry
Harvard Medical School
Chairman, OC Foundation Scientific Advisory Board

Introduction and Acknowlegments

This pamphlet was commissioned by the OC Foundation as a service for OCD patients and their family members. The purpose is to provide concise information about drug treatments for OCD and to answer frequently asked questions.

The answers in this book are the opinions of the author, but they are backed up by solid clinical studies. In the case where recommendations are based solely on the author's clinical experience, it will be stated.

I thank my academic colleagues who have helped advance our understanding of medications. A special thanks to my patients who have taught me much.

Overview

OCD is a devastating illness that can result in considerable social and economic disability for both afflicted patients and their family members. OCD is usually treated with a combination of specific behavioral therapies, called exposure and response prevention, and medications. It is important to note that many psychoactive medications are not likely to help OCD symptoms. That a number of partially-effective drugs have now been carefully evaluated. The treatment, for most OCD patients should involve the combination of behavior therapy with medications. This pamphlet will focus on medications, but that is not meant to diminish the importance of behavior therapy, which in fact may be our best treatment for OCD.

What kinds of medications may help OCD?

The majority of the drugs that help OCD are classified as antidepressants. It is important to note that depression results from the disability produced by OCD. Doctors can treat both the OCD and depression with the same medication.

There are also a number of disorders that are possibly related to OCD, such as compulsive gambling and sexual behaviors, trichotillomania, body dysmorphic disorder, compulsive eating, nail biting and compulsive spending. There is evidence that the medications and behavior therapies discussed in this pamphlet will help some of these patients. But more research is needed in this area to give firm recommendations.

Do all antidepressants help OCD symptoms?

No! Some commonly used antidepressants have no effect whatsoever on OCD symptoms. Drugs, such as imipramine (Tofranil) or amitriptyline (Elavil), that are good antidepressants, only rarely improve OCD symptoms.

Which drugs help OCD and how do we know these drugs are effective?

There are six drugs that have shown to be useful in good double-blind placebo controlled studies. This means both physician and patient are unaware of whether the patient is receiving drug or placebo [inert sugar pill]) (about half of the patients receive a drug and the other half a placebo or inactive pill). This is a very good way to evaluate drugs since improvements can be evaluated in an unbiased manner and drug effectiveness can be accurately determined.

The six drugs shown to be effective in such studies include: fluvoxamine (Luvox), fluoxetine (Prozac), sertraline (Zoloft), paroxetine (Paxil), citalopram (Celexa), and clomipramine (Anafranil). Anafranil has been around the longest and is the best studied throughout the world. There is growing evidence that the other drugs are as effective. In addition to these carefully studied drugs, there are hundreds of case reports of other drugs being helpful. There are reports of small number of patients that suggest that venlafaxine (Effexor) may be effective; but there have been no large scale controlled trials done yet.Why do these drugs help?

It remains unclear as to why these particular drugs help OCD while similar drugs do not. Each has potent effects on a particular neurotransmitter, or chemical messenger, in the brain called serotonin. It appears that potent effects on brain serotonin are necessary (but not sufficient) to produce improvement in OCD. Serotonin is one of several neurotransmitter chemicals that nerve cells in the brain use to communicate with one another. Unlike some other neurotransmitters, its receptors are not localized in a few specific areas of the brain. Its uptake and release affects much of our mental life, including OCD and depression.

Neurotransmitters such as serotonin are active when they are present in the "gap" (referring to the synaptic cleft) between nerve cells. Transmission is ended by a process where the chemicals are taken back up into the transmitting cell. The anti-obsessional drugs are called "serotonin reuptake inhibitors" or SRIs. They work by slowing the reuptake of serotonin, making it more available to the receiving cell and prolonging its effect in the synapse. We believe that the increased serotonin produces changes, over a period of a few weeks, in receptors (areas where serotonin attaches) in some of the membranes of the nerves.

We also believe that these receptors may be abnormal in patients with OCD. That the changes that occur in them due to these medications at least partly reverse the OCD symptoms. This is only part of how drugs work. It is very likely that other brain chemicals in addition to serotonin are involved. When activity in the brain's serotonergic system is altered, this changes the activity of other brain systems.

Experiments have been done with drugs that directly stimulate components of the serotonin system in the brain.  It was found that so-called serotonergic agonists actually make OCD symptoms worse. After patients are successfully treated for OCD, these agonists do not worsen OCD symptoms. This suggests that there may be some changes in the brain's serotonergic system with effective drug treatment that somehow results in improvement in symptoms.

Don't worry if this does not make sense to you. Researchers do not know how the drugs work and that is why this is all so confusing. The good news is that after decades of research, we know how to treat patients, even though we do not know exactly why our treatments work.

At what dosages are these drugs used?

It appears that for most people high dosages of these drugs are required to obtain antiobsessional effects. The studies done to date suggest that the following dosages may be necessary: Luvox (up to 300 mg/day), Prozac (40-80 mg/day), Zoloft (up to 200 mg/day), Paxil (40-60 mg/day), Celexa (up to 80 mg/day), Anafranil (up to 250 mg/day). Where a lower dosage was listed, some studies have suggested that a dose lower than the minimum was not significantly better than a placebo.

I have also seen a small number of patients who have not responded to large dosages of each of these medications. Some improved on extremely low doses, such as 5-10 mg/day of Prozac or 25 mg/day of Anafranil. These patients have not been carefully studied: and, to my knowledge, these low-dosage responders are not reported in the psychiatric literature. If patients fail to improve with high dosages of the above medications, it is probably worth a trial of a very low dose.

Are there side effects?

Each of these drugs has side effects. It is quite unusual for an individual patient not to have one or more side effects. tTe patient and physician must weigh the benefits of the drug against the side effects. It is important for the patient to be open about problems that may be caused by the medication. Sometimes an adjustment in dosage or switch in the time of day that one takes the medication is all that is required.

Luvox, Prozac, Paxil, Celexa, and Zoloft are called SSRIs or selective serotonin reuptake inhibitors, while Anafranil is an older tricyclic antidepressant or SRI (serotonin reuptake inhibitor) that has effects on other chemical messengers besides serotonin and is thus not selective for serotonin. All of these drugs commonly produce sexual side effects in both sexes. These side effects may range from lowering of sexual drive to delayed ability to have an orgasm to complete inability to have an erection or orgasm. There is an uncommon side effect that has been reported where patients have spontaneous orgasms while yawning. This must be uncommon since no patient has ever told me of such a symptom. When patients yawn in my office, they always look bored, not excited.

Patients report increased interest in sexual activity. You should tell your physician about sexual difficulties so that he or she can help you figure out how best to deal with them. These side effects are common. There have recently been a few reports of patients who were having sexual difficulties on these drugs who stopped taking them on Fridays and Saturdays. They were able to at least enjoy successful sexual activity on the weekends. It appears so far that this approach has not produced a relapse in symptoms, but  may be reported as people try this more often. Also, with Prozac this approach has not been as effective since it is a long acting compound.

The SSRIs commonly cause nausea, inability to sit still, sleepiness in some individuals, insomnia in others, and a heightened sense of energy. The tricyclic Anafranil may cause pronounced effects like drowsiness, dry mouth, racing heart, memory problems, concentration difficulties, and problems with urination (mostly in men). Sometimes weight gain is a problem and a strict diet may be needed if appetite is increased. There are many other  common side effects with these drugs that your physician may discuss with you. These drugs are very safe, even with long-term use; and all of the side effects completely reverse when the drugs are stopped. There is no evidence that they do permanent damage to the body.

In rare cases, the SSRI medications have been associated with suicidal thoughts and urges. If a patient reports significant worsening or onset of suicidal thoughts, keep in mind this possible association with medication.

What if I cannot tolerate even the smallest pill size of the medication?

Occasional patients are sensitive to medications and cannot tolerate even the lowest dosage that comes in pills. Many of the pills can be broken in half to allow for lower dosages. There are liquid forms of some of the medications that have allowed many patients to gradually increase the dosage to therapeutic levels. Often patients can start at very low dosages (eg, 1-2 mg per day) and very slowly increase the dose, they will eventually be able to tolerate the medication. This technique has proven so successful for many people. There is now a "fan club" of those helped by this approach.

Many patients have been able to use liquid medications.  One woman who was started on Prozac 20 mg/day, complained of bothersome side effects such as increased anxiety, shakiness, and terrible insomnia. She felt it made her OCD worse. She had horrible side effects from even 12.5 mg of Anafranil, and later with low dosages of Paxil and Zoloft. She started 1-2 mg/day of liquid Prozac. She heard it was good from other patients that she met from a computer bulletin board. She felt no side effects, and over a period of a few weeks, she got up to 20 mg/day without the previous side effects that she had felt on this dose in the past. She continued to increase the Prozac to 60 mg/day over a couple more months. Her OCD gradually improved quite dramatically. It is possible that careful and gradual increases in dosage with liquid medication may allow some medication-sensitive patients to reach therapeutic levels. It may be that some people's brains need a very slow titration upwards in dose to accommodate bothersome side effects, while others can go rapidly to a high dose.

The pharmaceutical industry is always trying to come up with new ways to administer the drugs to minimize side effects. Now there are long-acting medications that can be taken once a week.

Do antiobsessional medications cause long-term, irreversible side effects?

There are no irreversible side effects caused by the standard antiobsessional drugs. Many patients have used them for years without difficulties. Some of the drugs that are occasionally used - such as the antipsychotic (or sometimes called neuroleptic) drugs like haloperidol (Haldol), chlorpromazine (Thorazine), thioridazine (Mellaril), and trifluoperazine (Stelazine) - can produce irreversible neurologic problems, such as, persistent tremor, mouth movements or tongue thrusting. These drugs are best avoided in patients with the usual forms of OCD; if they are used, it should generally be for only a few weeks.

Occasionally patients need to remain on these potentially troublesome drugs for longer periods of time. In OCD patients that also have tics (brief muscle jerks, such as, repetitive eye blinks, nervous cough, or shoulder shrugs), there is now evidence that very low doses of these neuroleptic drugs added to ongoing SSRI medication helps OCD symptoms. In OCD patients without tics, there is no evidence that neuroleptics are helpful and are best avoided.

There are newer neuroleptic agents, like clozapine (Clozaril), olanzapine (Zyprexa), quietapine (Seroquel), and risperidone (Risperdol) that may have fewer neurologic problems, that may be helpful when added to SSRI treatment. These new drugs should not be used alone since they have been associated with  causing the onset of OCD symptoms when not taken in combination with a SSRI.

Who should not take antiobsessional medications?

We try not to give antiobsessional medications to women who are pregnant or are breastfeeding. Since we do not clearly understand the long-term effects of these drugs on a fetus or infant, this is the most prudent course of action. If severe OCD cannot be controlled any other way, these medications seem to be safe and many pregnant women have taken them without difficulty. If there were risk to the fetus, it is likely that most of the risk would be during the first 3 months of pregnancy when the brain is developing. Some OCD patients use the behavioral techniques of exposure and response prevention to avoid medications at least during the initial 3 months of pregnancy. If your OCD is severe, you may need to take a medication throughout the course of pregnancy.

In very elderly patients, it is best to avoid Anafranil as the initial drug since it has side effects that can interfere with thinking and can cause or worsen confusion in the elderly. Some of the other antiobsessional drugs like Prozac, Zoloft, Luvox, Celexa and Paxil can be used in the elderly, but greatly reduced dosages are often needed. Although these drugs can be taken by patients with heart disorders, special caution is required, and close monitoring with frequent cardiograms (ECGs) may be necessary.

Should I take antiobsessional medications only when I am feeling stressed?

No. This is a common mistake. These medications are meant to be taken on a daily basis to maintain a constant level. They are not taken like the typical antianxiety agents; when you feel upset or anxious. It is best not to miss dosages if possible. It is unlikely that any adverse effect on OCD will occur if a daily dose is missed occasionally and sometimes missed dosages are prescribed by your doctor to help manage troublesome side effects, such as, sexual dysfunction.

What kind of doctor should I look for to prescribe these antiobsessional medications?

Although any licensed physician can legally prescribe these drugs, it is probably best to deal directly with a board-certified psychiatrist who understands OCD. A list of psychiatrists with special interest in OCD can be obtained from the OC Foundation. These are physicians who have expressed an interest in OCD and the Foundation has not evaluated them in any way. Legally, they are obligated to list any psychiatrist who expresses an interest in the disorder. It is important to find a psychiatrist who is also a psychopharmacologist; that is, one who has special knowledge about the use of drugs to treat psychiatric disorders.

What if I feel as if I've failed because I need a drug to help me?

A way to think about the use of medication for OCD is to compare your illness with a common medical disorder such as diabetes. There is growing evidence that OCD is,  a neurologic or medical illness not simply a result of some problem in the environment or of improper upbringing. As the diabetic needs insulin to live a normal life, some OCD patients need anticompulsive medication to function normally. Diabetics often feel angry and upset about having to take insulin. There is no evidence that OCD is a result of anything that the patient or their parents have done. It is best to consider it a chemical or neurologic disorder affecting a part of the brain.

What if I am afraid to take medications because of my obsessional fears about drugs?

Usually with reassurance from a doctor that you trust, your fears can be overcome. If you refuse to take medication, behavior therapy can be started first, and part of the therapy can focus on your reluctance to take medication. Our experience indicates that the combination of medication and behavior therapy maximizes your chances for improvement.

How much does it cost to take these drugs?

These drugs are very expensive and cost the patient up to $6 or $7 per day for larger doses. When the patent expires on these drugs, other companies can make generic forms of each drug, and then the prices will fall.

Why are they so expensive?

We must keep in mind that it costs many millions of dollars to bring just a single drug to market in the United States. Most drugs do not make it to the market and represent a lost investment. If the pharmaceutical companies do not try out new agents, no progress in this area is likely. These companies spend millions in research trying to identify new compounds that may have therapeutic value. Without pharmaceutical companies, there would likely be few, if any, advances in clinical pharmacology in the United States. We would not have new drugs available to us.

Pharmaceutical companies are heavily involved in promoting awareness of various diseases, including OCD. These promotions (television, radio, print) are of benefit to patients. This is often the manner in which they discover that they have OCD, that it has a name, and that it can be treated. Pharmaceutical companies are active in promoting non-drug treatments, such as, behavior therapy, when they have nothing financially to gain. They also sponsor educational programs to physicians and have been instrumental in spreading the knowledge base about OCD to both physicians and patients. They have been financial backers of organizations like the national Obsessive Compulsive Foundation.

Can I get the drugs if I cannot afford them?

Often pharmaceutical company representatives visit physicians and leave free samples of medications. Physicians give these samples to patients who cannot afford the expense of the medications.

Each of the pharmaceutical companies involved in the production of the five primary antiobsessional drugs offers free drugs to patients who are poor. The Pharmaceutical Manufacturers Association publishes a directory of indigent programs for those who cannot afford medications. Physicians can request a copy of the guide by calling (800) PMA-INFO. To get more information on each company's programs, you or your physician can contact the indigent patient program at the following companies directly:

How long does it take antiobsessional medications to work?

It is important not to give up on a medication until you have been taking it at a therapeutic dose for 10 to 12 weeks. Many patients feel no positive effects for the first few weeks of treatment. Then they may improve greatly. During the early part of treatment, patients may have side effects and no positive results. Sometimes physicians forget to tell patients about this lag in response. We do not know why the medications take so long to work for OCD. Many psychiatrists give up on the medications after 4 to 6 weeks, since this is the time it takes for depressed patients to improve. You may have to remind your psychiatrist to keep you on the medication longer.

How helpful can I expect these medications to be?

Each medication helps about 75% to 85% of the patients. About 50% to 60% of patients have a moderate response to medication. Some patients have no response at all. If you do not respond to the first medication, then it is important to go on to the next. I have seen patients who have had no response to three medications, have a wonderful response to the next one. There are techniques of combining medications that may increase the response magnitude and rate (see next section). One patient wrote to me: "seeking an effective medication for OCD is a lot like dating to find a mate; don't be afraid to shop around and try different meds till you find one that works for you!"

What about augmenting one drug with another?

The best augmenting technique is to add behavior therapy to ongoing drug treatment. However, to boost a drug's effect, we sometimes combine two or more medications together. Some people respond to combining an SSRI with Anafranil. It is important for the physician to keep in mind that Anafranil's blood level can be dramatically increased by adding one of the other drugs. It is important to keep Anafranil's dose low during the initial stages of treatment. Sometimes blood levels are helpful, but most often a good clinician can follow side effects and symptom reduction to find the correct dosage.

Other drugs are sometimes combined with ongoing SRI medications. Some that have commonly been used include: buspirone (Buspar), lithium carbonate (Eskalith), clonazepam (Klonopin), methylphenidate (Ritalin), gabapentin (Neurontin), and other antidepressants (eg, trazodone, bupropion, desipramine, etc). The controlled trials that have been done with these augmenting agents have been disappointing. But since some patients respond to the addition of a second drug, clinicians often try this technique.

Are there other medications that can be used to treat OCD?

There are drugs that are occasionally helpful in individual patients besides the ones already mentioned. Some patients may be helped by drugs called monoamine oxidase inhibitors (e.g., Nardil [phenelzine], Parnate [tranylcypromine]) that work in a different way than the other mentioned drugs. These drugs inhibit one of the enzymes that degrades the chemical messengers in the nerve gaps,  lengthening the time that the messenger is active.

There is some anecdotal evidence that OCD patients who have panic attacks or prominent concerns with symmetry may improve with monoamine oxidase inhibitors. Certain foods and medications cannot be taken with these drugs or potentially fatal reactions can occur. They are particularly dangerous in combination with the SRI medications so these must be stopped for at least 2 weeks (5 weeks for Prozac which is longer lasting) prior to starting monoamine oxidase inhibitors.

The other antidepressants occasionally help, but chances of this are quite small.

Will I have to take antiobsessional medications forever?

No one knows how long patients should take these medications once they have been effective. Some patients are able to discontinue medications after a 6 to 12-month treatment period. It does appear that over half of OCD patients (and maybe many more) will need to be on at least a low dosage of medication for years, perhaps even for life. It seems likely that the risk of relapse is lower if patients learn to use behavior therapy techniques while they are doing well on medications. And if medication is tapered slowly (even over several months). The behavioral techniques may enable patients to control any symptoms that return when they stop taking medication.  After medications are stopped, symptoms do not return immediately. They may start to return within a few weeks to a few months.

When one of these drugs is working and then discontinued and symptoms return. The vast majority of patients have a good response upon reinstitution of the medication. However, I have now seen a few patients who did not respond when the discontinued drug was restarted.

Can I drink alcohol while on medication?

Many patients drink alcohol while on medications and tolerate it well. It is important to keep in mind that alcohol may have a greater effect on individuals who are taking medication. One drink could affect an individual as if it were two drinks. Also, alcohol may counteract some of the therapeutic effects of the medication, so it may be wise to try not to drink alcohol during the first couple of months after starting medication.

Do I need other treatments in addition to medications?

Most psychiatrists and behavior therapists today believe that combining behavior therapy, consisting of exposure and response prevention, and medication is the most effective approach.

What is Behavior Therapy?

Traditional psychotherapy, aimed at helping the patient develop insight into their problem, is generally not helpful specifically for OCD symptoms. Traditional psychotherapy may be of benefit as part of a treatment package for patients who have been ill and isolated for many years or for those whose illness started at an early age.

Behavior therapy consisting of techniques called "exposure and response prevention" is effective for many people with OCD. In this approach, the patient is deliberately and voluntarily exposed to feared objects or ideas, either directly or by imagination (the exposure component). Then he is discouraged or prevented (with the patient's permission) from carrying out the usual compulsive response (the response prevention component). A compulsive hand washer may be urged to touch an object believed to be contaminated, and then may be denied the opportunity to wash for several hours. When the treatment works well, the patient gradually experiences less anxiety from the obsessive thoughts they become able to do without the compulsive actions for extended periods of time.

Studies of behavior therapy for OCD have found it to produce lasting benefits. To achieve the best results, a combination of factors are necessary. The therapist should be well trained; the patient must be highly motivated; and the patient's family must be cooperative. In addition to visits to the therapist, the patient must be faithful in fulfilling "homework assignments." Those patients who complete the course of treatment, the improvements can be significant.

With a combination of drug and behavioral therapy, the majority of OCD patients will be able to function well in both their work and social lives. The ongoing search for causes, along with research on treatment, promises to yield even more options for people with OCD and their families.

How are OCD and depression related?

Approximately 2/3 of OCD patients have suffered at least one major depression during their life. About 1/3 are depressed when they come to us for treatment. Some schools of thought believe the OCD causes the depression while others believe the OCD and depression simply tend to co-exist. Most patients tell me that their OCD symptoms came first, and then the depression began when they were unable to handle the OCD.

What are some signs of depression?

The presence of one or more of these symptoms does not necessarily indicate the presence of depression; but if several are present, you may be depressed.

What if my OCD gets better, but I remain depressed?

It sometimes happens that OCD improves and depression persists. Occasionally, a second drug is added to combat the depression. Sometimes your doctor can assist you in finding other reasons why depression persists.

How do I find treatment?

One of the easiest ways to find a mental health professional in your area who has experience dealing with OCD patients is to contact the OC Foundation in New Haven, Connecticut. You can call the Association of Advancement of Behavior Therapy. See information below.

The OC Foundation will send you a packet of information and a bi-monthly newsletter for a small membership fee.

The OC Foundation lists a large number of support groups in different locations all around the world. Often the support group leaders are the best local resource to find competent local OCD doctors.

How can I reach the OC Foundation?

What are some titles of books and other information about OCD?

(Most of the following titles are available through the OC Foundation: 203:401-2070)

1) Baer L. Getting Control: Overcoming Your Obsessions and Compulsions.

2) Foa E, Wilson R. Stop Obsessing: How to Overcome Your Obsessions and Compulsions.

3) Neziroglu F, Yaryura-Tobias J. Over and Over Again: Understanding Obsessive Compulsive.

4) Steketee G, White K. When Once Is Not Enough: Help for Obsessive Compulsives.

5) Foster C. Funny You Don't Look Crazy: Life with Obsessive Compulsive Disorder.

6) Greist J. Obsessive Compulsive Disorder: A Guide Madison Institute of Medicine, Madison, WI.

7) Foster C. Polly's Magic Games: A Child's View of Obsessive Compulsive Disorder.

8) New Developments in the Biology of Mental Disorders. Research and Education Assoc.

1995. Section on government funding/research.

9) Jenike MA, Baer L, Minichiello WE (editors) Obsessive-Compulsive Disorders: Practical Management. Third Edition.

10) Elfenbein D. Living with Prozac and other selective serotonin reuptake inhibitors.

11) Jenike MA, Asberg M (editors) Understanding Obsessive Compulsive Disorder.

12) Jenike M (editor) Obsessional Disorders. Psychiatric Clinics of North America. Vol 15, Number 4, December 1992.

13) Heisler T Kissing Doorknobs.

14) Colas E Just Checking.

15) Gravitz HL Obsessive Compulsive Disorder: New Help for the Family.

16) Pinto-Wagner A Up and Down the Worry Hill: A Children's Book about Obsessive Compulsive Disorder and its Treatment.

For Bad Thoughts

For Scrupulosity

Ciarrocchi JW The Doubting Disease: Help for Scrupulosity and Religious Compulsions.

For Body Dysmorphic Disorder

For Trichotillomania

For Clinicians Interested In Learning Behavior Therapy

Videotape

Are There Other Resources For People With OCD And Related Disorders?

Trichotillomania Learning Center
http://www.trich.org
207 McPherson Street, Suite H
Santa Cruz, CA 95060-5863
Phone: (831) 457-1004
Fax: (831) 426-4383
Email: info@trich.org