Treatment-Resistant OCD

by stuart miles

by stuart miles

Over the years I have received emails from people with obsessive-compulsive disorder who tell me their OCD is treatment resistant. In some cases they have been told this by a professional, and in other instances people have come to this conclusion on their own.

In writing this post, I figured it would be a good idea to first define treatment resistance in OCD. Surprisingly, I came across some conflicting information on several sites. Does it mean the patient has no improvement at all even when all proper therapies have been attempted? Does it mean there might be a small improvement but not enough to make a difference in the quality of life of the person with OCD? Does it mean nothing will ever help? Check out the definition of treatment-resistant OCD in this article:

Treatment resistant OCD is generally defined by two adequate attempts with SRIs. SRIs stand for a class of medication called antidepressants. They include tricyclic antidepressants (TCAs) and selective serotonin reuptake inhibitors (SSRIs).

While a few articles I read said that treatment-resistant OCD and treatment-refractory OCD were interchangeable terms, this one said they are very different, and went on to define treatment-refractory OCD:

True treatment-refractory OCD can only be determined if a person has tried, at a minimum, three different SSRIs at a maximum dosage for at least 3 to 6 months each (with the TCA clomipramine being one of them). They must have also undergone behavioral therapy while on a therapeutic dose of an SSRI, and lastly, have received at least two atypical anti-psychotics as augmenters while receiving behavioral therapy and taking the SSRIs.

With these varied (and somewhat vague…CBT for how long?) definitions, how can anyone  be sure what their health-care providers mean when they say, “Your OCD is treatment resistant?” The above definition of treatment resistance would have fit for my son Dan, as medication never seemed to help him. But he recovered from severe OCD once he embraced exposure and response prevention (ERP) therapy. His OCD went from severe to mild and he continues to do well seven years later.

It’s confusing to say the least. So many definitions and interpretations. Most of the articles I read focused mainly on all the possible combinations of medications that could be attempted before the label of “treatment-resistant” is applied. But hidden amid the treatment options of novel medications and neurosurgery was this sentence about Cognitive Behavioral Therapy (CBT):

As stated, most OCD sufferers have not received an adequate trial of behavioral therapy, which is ultimately the most effective way to beat OCD long-term.

While I don’t deny there are people out there who truly have treatment-resistant OCD, my hunch is there are many people with this label who can be helped with the proper treatment.

A valuable lesson learned from my son’s journey through severe OCD is that you can’t always believe everything everyone tells you. Whether you’ve been labeled treatment resistant by yourself or someone else, do whatever you can to get good ERP therapy. And then do yourself a favor and read this important article by Dr. Seth Gillihan; share it with your therapist if necessary. And don’t give up! I believe there is always HOPE for those with OCD.





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12 Responses to Treatment-Resistant OCD

  1. Mr. Militant Negro says:

    Reblogged this on The Militant Negro™.

  2. Jeanne Carter says:

    My daughter has finally found someone in Kansas City who provides ERP therapy but they don’t accept insurance.  She has talked to her insurance provider and they said they would not cover this.  After many phone calls, letter writing etc. insurance company agreed to negotiate a lower rate with the clinic.  Seems the clinic and insurance couldn’t come to terms.  Insurance company is suggesting other clinics in the area.  My daughter has had several visits and was very impressed with this group and was so hopeful of getting the ERP therapy.  She has tried several different clinics in the Kansas City area and they didn’t seem to know much of anything about ERP therapy!  Is this a common problem – for insurance companies to not cover ERP?Thank you for all you do to help people with OCD.Jeanne Carter

    Sent from Yahoo Mail on Android

    • Hi Jeanne, Thank you for sharing and also for your kind words. Unfortunately the scenario you describe is all too common. It is so upsetting and frustrating. I would suggest reading this post: It links to an article written by Dr. Fred Penzel that I know people have found extremely helpful in dealing with insurance companies. You need to know your rights and stand your ground, and there are people who have succeeded in getting the coverage they deserve. Good luck and please keep me posted!

  3. Paul Inglis says:

    Well written. I agree with you about having a hunch that some people can be helped more than they believe. I was one of these people. Yes, ERP is very good. it takes time though. It took me 4 years to start seeing the benefits of this. Don’t despair. Keep your hope alive.

    • Thanks for sharing Paul and I’m glad you have found ERP helpful. From what I understand, when most people finally find a good therapist and are totally invested in ERP therapy it shouldn’t take that long to see some positive results. I’s sorry it took you so long to begin feeling better but your last sentence says it all: Keep your hope alive!

  4. The ‘average’ time it takes a person to start ERP is 8 YEARS!

  5. Thanks for this information. There is so much room for more research and education to providers and doctors that needs to happen. Thank you to India who also informed me that ACT is also another option possibly in conjunction with ERP. I continue to work toward learning all I can. People, all people, need to be educated to make a difference in this battle with OCD. Thanks for this blog post.

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