Sunday, September 13, 2009

Clozapine

I find the whole subject of drugs very boring. Ditto for vitamins. There is only such much you can say about them when it comes to treating mental illness. For the record, Chris has been on the following medications. Respirdal, Effexor, Abilify, clozapine, Solian, Serdolect. I think he has been on enough. I thought he had been on enough after sampling only two of them. I feel I have been misled from the beginning about the medications. The hospital never indicated to us that there was another way to treat psychosis, e.g. using megadose vitamins in place of medications or through targetted psychotherapy. Ian and I were new to the game and never thought that there might be alternative theories as to what schizophrenia really is and how to treat it. We trusted the doctors to get Chris well.

We were misled about the clozapine. Chris had only been on Respirdal and Effexor, then briefly Abilify, when the doctors began urging clozapine on us. I had heard it was for the "treatment resistant" (to a layperson, it means they have tried everything else with no success and after that you are considered chronic) and so we resisted putting Chris on it. Having only tried two antipsychotics, I thought it a tad premature to label him treatment resistant. What clozapine did was to add many more pounds onto the pounds that the previous drugs had already added. Chris also had to put up with getting blood tests done every two weeks.

The doctors at Chris's program thought clozapine was marvelous for their patients - they said so often. They didn’t have to deal with Chris’s raging hunger, the fridge door always open and our food bill practically doubling. Chris was now a prisoner in his own body. Unsurprisingly, clozapine didn't improve Chris. Faced with a patient who didn't respond to clozapine, the doctors preferred to leave him on it anyway, over Ian's and my objections. It was their drug of last resort.

Clozapine is a bitch to get off of, but it can be done. You can go into the hospital and reduce it rather quickly while substituting another drug, or you can do it very, very slowly over time. At first Chris's holistic psychiatrist was reluctant to even try taking him off it because she had heard no one had ever come off it successfully. She felt that people who had been on it more than a year would not be able to withdraw. When she told me that, I was crushed. Chris had been on it two years at that point. Lucky for us she was willing to try. It took Chris one year to go from from 25 mg of Clozapine to 0.

8 comments:

  1. Thanks for your post. Getting off the medications is very difficult. We also had the experience with my daughter of the doctors not explaining there were other ways to deal with the problem, and with the shrugging off of very real side effects.

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  2. I too was on Clozaril for fifteen years! And what a waste of my life it was! It did not help my voices or the paranioa. Finally I was slowly taken off this terrible drug and tried on another, Abilify. I was on a very high dose of the Abilify before my symptoms began to vanish. I have now been fully recovered from schizophrenia for five years and am now taking a low dose, 10 mg. of Abilfy. The thing that helped me in my recovery the most was Cognitive Behavorial Therapy. What a difference it has made! You are most welcome to visit my blog at schizophrenia-blog.blogspot.com. I look forward to hearing more of your story. Blessing to you and your son.

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  3. Thank you both for your input. More people should be aware that there is another way forward.

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  4. i came of clozaril after 14 years,had to come off suddenly due to a red blood test. it was a complete nightmare for 2 weeks and isnt much better after a year. constant high anxiety all my senses are heightened it drives me mad. my pychotic symptoms are ok now on 15mgs of abilify but anxiety is unbearable. think twice about coming off clozaril if you have been on it a long time, only come off it if you have to.

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    1. I am very sorry to hear of your constant anxiety. You have pointed out another problem with antipsychotic drugs (in this case, clozaril). If a patient has to be quickly taken off them, there is hell to pay. If you are not already aware of the Beyond Meds blog, please check it out. The author has lots of experience with iatrogenic illness.

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  5. What is a good natural replacement for Clozapine?

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    1. I don't think there is a natural replacement for clozapine, nor for any other antipsychotic drug. Healing takes a complex course. Right now my son is on Abilify, and has started reduce his 5 mg dose. I have seen him do well on less than 1 mg, which is 1/5 the recommended minimum dose. What is helpful is time, learning to understand oneself, learning to understand what is stress inducing. Eventually, I am hoping that he, like many others, can eliminate the fraction of the dose entirely. Not sure if this is the answer you were hoping for.

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  6. On the other hands...from those above...my son has been on high doses of clozaril, after other medications had not helped him...on clozaril for fifteen years...and it has been most helpful for him. Schizophrenia is at least principally a biological disease, and perhaps entiredly so...and so medications, such as clozaril, are the best bet. Some danger, of course, and for some, unpleasant side effects...and all of this is minor compared to schizophrenia's problems.
    Jeffrey G Shapiro, Ph.D.

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