If you or someone you care about has been diagnosed with obsessive-compulsive disorder (OCD), you may feel you are the only person facing the difficulties of this illness. But you are not alone. In the United States, 1 in 50 adults currently has OCD, and twice that many have had it at some point in their lives. Fortunately, very effective treatments for OCD are now available to help you regain a more satisfying life. Here are answers to the most commonly asked questions about OCD.
Research clearly shows that the serotonin reuptake inhibitors (SRIs) are uniquely effective treatments for OCD. These medications increase the concentration of serotonin, a chemical messenger in the brain. Five SRIs are currently available by prescription in the United States:
Fluoxetine, fluvoxamine, paroxetine, and sertraline are called selective serotonin reuptake inhibitors (SSRIs) because they primarily affect only serotonin. Clomipramine is a nonselective SRI, which means that it affects many other neurotransmitters besides serotonin. This means that clomipramine has a more complicated set of side effects than the SSRIs. For this reason, the SSRIs are usually tried first since they are usually easier for people to tolerate.
When patients are asked about how well they are doing compared to before starting treatment, they report marked to moderate improvement after 8 - 10 weeks on a serotonin reuptake inhibitor (SRIs) Unfortunately, fewer than 20% of those treated with medication alone end up with no OCD symptoms. This is why medication is often combined with CBT to get more complete and lasting results. About 20% don't experience much improvement with the first SRI and need to try another SRI.
Studies show that all the SRIs are about equally effective. However, to reduce the chance of side effects, most experts recommend beginning treatment with one of the selective serotonin reuptake inhibitors (SSRIs). If you or someone in your family did well or poorly with a medication in the past, this may influence the choice. If you have medical problems (e.g., an irritable stomach, problems sleeping) or are taking another medication, these factors may cause your doctor to recommend one or another medication to minimize side effects or to avoid possible drug interactions.
First, it is important to remember that these medications don't work right away. Most patients notice some benefit after 3 to 4 weeks, while maximum benefit should occur after 10 to 12 weeks of treatment at an adequate dose of medication. When it is clear that a medication is not working well enough, most experts recommend switching to another SRI. While most patients do equally well on any of the SRIs, some will do better on one than another, so it is important to keep trying until you find the medication and dosage schedule that is right for you.
In general, the SRIs are well tolerated by most people with OCD. The four SSRIs (fluoxetine, fluvoxamine, paroxetine, and sertraline) have similar side effects. These include nervousness, insomnia, restlessness, nausea, and diarrhea. The most common side effects of clomipramine are dry mouth, sedation, dizziness, and weight gain. While all five drugs can cause sexual problems, on average these are a bit more common with clomipramine. Clomipramine is also more likely to cause problems with blood pressure and irregular heart beats, so that children and adolescents and patients with preexisting heart disease who are treated with clomipramine must have electrocardiograms before beginning treatment and at regular intervals during treatment. Remember that all side effects depend on the dose of medication and on how long you have been taking it. If side effects are a big issue, it is important to start with a low dose and increase the dose slowly. More severe side effects are associated with larger doses and a rapid increase in the dose. Tolerance to side effects may be more likely to develop with the SSRIs than with clomipramine, so that many patients are better able to tolerate the SSRIs than clomipramine over the long term. All SRIs except fluoxetine should be tapered and stopped slowly because of the possibility of the return of symptoms and withdrawal reactions.
Some people have different side effects than others and one person's side effect (for example, unpleasant sleepiness) may actually help another person (someone with insomnia). The side effects you may get from medication depend on:
If side effects are a problem for you, your doctor can try a number of things to help:
Remember: Changing medicine is a complicated, potentially risky decision. Don't stop your medicine or change the dose on your own. Discuss any medication problems you are having with your doctor
When medication has produced only a little benefit after 6 weeks, adding CBT or another medication to the SRI is also sometimes useful.
Many experts believe that CBT is the most helpful treatment to add when someone with OCD is not responding well to medication alone. When people continue to avoid the things that make them anxious or continue to do rituals, this blocks the effects of the medication. For the medication to work, therefore, the person with OCD must try to resist doing rituals. Adding CBT to medication is helpful because it teaches those with OCD to expose themselves to the triggers that make them anxious and then to resist performing rituals.
It may also be helpful to add one of the following types of medications to an SRI:
These complex medication strategies are best reserved for those who have not done well with a combination of SRI and CBT.
Before deciding that a treatment has failed, your therapist needs to be sure that the treatment has been given in a large enough dose for a sufficient period of time. There is little consensus among the OCD experts on what to do next when someone with OCD fails to respond to expert CBT plus well-delivered, sequential SRI trials. Switching from an SSRI to clomipramine may improve the chances that a previously non-responsive patient may have a good response. Most experts recommend considering a trial of clomipramine after 2 or 3 failed SSRI trials. Occasionally, a doctor may wish to combine an SSRI with clomipramine either to reduce side effects or to increase the potential benefits of medication. In the adult with extremely severe and unremitting OCD, neurosurgical treatment to interrupt specific brain circuits that are malfunctioning can be very helpful. In patients who have severe OCD and depression, electroconvulsive therapy (ECT) may be of benefit.
If you think you might be pregnant or are planning to become pregnant, most experts prefer to treat OCD with CBT alone. However, if medications are necessary (and they may be since OCD commonly gets worse during pregnancy), it is better to use them sparingly and to select an SSRI rather than clomipramine.
The SSRIs are preferred in patients with renal failure or coexisting heart disease who require medication.
When another psychiatric disorder is present, your doctor will likely mix and match treatment for the other conditions with treatment for OCD. Sometimes, the same medication can be used for two disorders (e.g., an SRI for OCD and panic disorder). In other cases, such as concurrent mania and OCD, more than one medication will be necessary (e.g., a mood stabilizer and an SRI).
Laboratory tests are necessary before and during treatment with clomipramine, but not with the SSRIs.
The SRIs are not addictive, but it is a good idea to stop them gradually.
People with OCD can almost always be treated as outpatients. In very rare cases in which the OCD involves severe depression or aggressive impulses, hospitalization may be necessary for safety. When a person has very severe OCD or the OCD is complicated by a medical or neuropsychiatric illness, hospitalization can sometimes be a useful way to give intensive CBT.
No single approach works best for everyone with OCD, although most people probably do best with CBT alone or CBT plus an SRI. The treatment choice will of course depend on the patient's preference. Some people prefer to start with medication to avoid the time and trouble associated with CBT; others prefer to begin with CBT to avoid medication side effects. Many, if not most, people seem to prefer combination treatment.
The need for medication depends on the severity of the OCD and the age of the person. In milder OCD, CBT alone is often the initial choice, but medication may also be needed if CBT is not effective enough. Individuals with severe OCD or complicating conditions that may interfere with CBT (e.g., panic disorder, depression) often need to start with medication, adding CBT once the medicine has provided some relief. In younger patients, clinicians are more likely to use CBT alone. However, trained cognitive-behavioral psychotherapists are in short supply. Thus, when CBT is not available, medication may become the treatment of choice. Consequently, it is likely that many more people with OCD receive medication than CBT.
Before deciding on a treatment approach, you and your clinician will need to assess your OCD symptoms, other disorders you have, the availability of CBT, and your wishes and desires about what treatment you want. Try to find a clinician who will talk to you about these possibilities so that you can make your own best choice among the options available to you.
More and more people in the United States are receiving their medical care in some kind of managed care setting (HMO, preferred provider organization, etc.). If you have OCD, it is important that you talk to your case manager or administrator to find out what types of therapy are available in your network. Many managed care programs are instituting group therapy programs as a means of providing appropriate treatment at an affordable cost.
The companies who manufacture the five SRI medications listed above each have a special program to provide free medications for patients who cannot afford them. The Pharmaceutical Research and Manufacturers Association publishes a directory of programs for those who cannot afford medications, which your doctor can request by calling 202-835-3450. You or your doctor can also contact the companies directly: