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.
I am currently on my 4th injection (2 week period). I have been recognized as high IGE levels 8k-16k from teenage years(Have been genetically tested and turned up negative for Hyper IGE syndrome). I’m 33 with AD head to toe using mostly steroid creams as my main source of treatment my whole life. Since, being on this medication I have seen extreme improvement at least below my neckline; face and neck still varies, but is not as severe as before. I am hoping to use this medication as a transition away from steroid creams without having to suffer TSW. Since, being on this medication I have been fairly healthy and active; I have not shown any side effects as of yet. This could be because of my regime since I have been on fish oil and vitamin capsules half year prior to taking this, I have also limited the amount of allergens I come in contact with environmental and food. I believe this drug not to be a miracle drug, but it does help me significantly and has reduced itchy by 90%. I can still break out(face/neck) if I have large doses of liquor, allergen foods, or high levels of body stress. The flares seem different though than before; its more of an intense dry painful burn sensation on my skin as before it would be slight burning but there would be lots of swelling. it’s as if all the clear liquid that my body used to massively produce from the mast cells are not present anymore; how this effects me later I do not know. I’ve also noticed large wounds been able to heal due to the fact the liquid that was once present has been absent around the edges of the wound. On another note I have not had to deal with any staph infection flares since being on this medication. Hopefully this can be useful to you; if you have any other questions contact me by email.
I have heard your story over 2000 times. Every lab test and worldly observations are blamed, evaluated with a waste of time and energy. The problem is all steroids. Everyone with atopic dermatitis has elevated IGE. Further evaluations of IGE have proven to valueless. The cure lies only in total cessation of steroids. Cyclosporine would have worked 10 times faster and with much less expense.