Some thoughts about Dupilumab
- We all need input from patients who have been taking or took the drug.
- Information on patients on the drug has not been forthcoming.
- Tell us if you have had good results or no results.
- Yes, this is anecdotal, but we need some direction.
- The drug is extremely expensive – why?
- In my experience seeing patients in the office, I have seen several patients who failed while taking the drug, one patient being given the drug free for a year – why? – to increase the numbers of patients for the FDA, patients on the drug and still using steroids, patients on the drug and stopping steroids but still flaring.
- What are the real answers in a large group of patients?
- The studies published were not very positive and many patients dropped out of the study.
- Where do we stand?
- I still contend that all of the patients using this medication are RSS individuals and not having bad eczema.
- What are the long term side effects of this medication?
In 1978 I initiated and set up the contact and photo dermatitis clinic at UCLA. There was a need to evaluate a large group of patients who exhibited severe eczematoid rashes, especially on the face. Patients were referred from all over Southern California. All patients underwent a lengthy history and examination. Further evaluations included blood studies, allergy patch testing, special sunlight (photo) testing and skin biopsies.
From the start it was apparent that most patients experienced a mild dermatitis on various parts of the body that progressively worsened. Their histories always included numerous doctor visits, multiple physicians, and therapy consisting of an increasing amount of corticosteroids.
My testing failed to reveal any specific culprit chemicals, cosmetics, perfumes, workplace or recreational exposures. It became increasingly clear that the physician’s therapy, the corticosteroids, was invariably causing the problem.
I wrote 7 scientific articles that were published in the most august peer-reviewed dermatologic journals and I gave many lectures at various dermatology meetings. To this day an unfortunate reluctance exists on the part of most physicians to accept this simple concept.
I’ve mostly cleared by going through TSW. In 2016, I was told Dupilumab was on the “fast track” for FDA approval and offered the clinical trial. (Interpretation: The drug company was pushing it and maybe pressuring them to cut corners to expedite it). Having been “burned” by steroids, I was not interested in being burned again or “duped” by Dupilumab with no long-term testing. I believe prescribers get incentives one way or another.
I wish everyone with Topical Steroid Addiction/Withdrawal would write to Dr. Oz using: http://www.doctoroz.com/guest-plug/do-you-want-be-guest-dr-oz-show and maybe we can get this topic on his show.
Some very curious things have occurred in patients on Dupilumab that I have seen in the office. One patient had 2 shots, got worse and stopped, one patient received an extremely lengthly letter from his doctor strongly inviting him to begin Dupilumab therapy – makes me wonder if stipends are being given to doctors to bring patients on board. I have never seen this approach to a new drug in 40 years. Very fishy. One patient continues on the shots but is ‘ill’ for 2 days after every shot (tired, weak, unable to eat). Yes, these are anecdotal, but at $37,000 for a year’s therapy we should be told everything about this new drug.