These answers are for informational purposes and do not replace a physician head-to-head visit. A patient-physician relationship is not established.
Is the drug your dermatologist wants to try Soriatane?
We treated successfully treated on of our Darier-White patients with photodynamic therapy ( not that I have hundreds, this being a relatively rare condition). This would probably have to be repeated yearly. However, it is very safe and compared to a Reinoid safe, in that it would not require monitoring with its office visits and lab work. Also, if you are using an oral Retinoid such as Soriatane, this too would not be curative and would require periodic re-treatment.
This treatment would be off label, which means your dermatologist would need to write a letter or two on your behalf for insurance coverage.
In photodynamic therapy a chemical called 8 amino-levulinic acid would be painted on the involved skin. You would then "incubate" in the waiting room for an hour. Then the blue light would be applied. This is an intense pulsed light. There is not a clearly defined protocol as to how many times this would be done, but we treated our patient four times.
Another possible treatment would be Celebrex, which has notoriety as the pill used for arthritis, which many physicians ceased using after it turned out to cause heart beat irregularities.
Still, many patients are still treated with it. ( My mother used it for years for her arthritis).
Again, the use of Celebrex is off label.
Oral antibiotics can help with Darier-White but will not cause a remission. I note that you did not mention that among your treatments. A further suggestion, as far as topical treatment of your condition would be to add Cerave Moisturizing Cream or Cetaphil Restoraderm to help normalize the skin and allow a stronger version of Tazorac to be used.
the medication she has prescribed is Acitretin, I have not filled the prescription as of this time as she needs the blood work prior to administration. However, I am very uncomfortable with the side effects of this particular drug.
I would much prefer to try something less invasive & certainly less caustic. I have tried the anitibiotics, that was the 1st step. I have cetaphil in my home, I could try that along with the tazorac.
What could celebrex do for this particular problem?
Aitretin is the generic name for Soriatane.
Celebrex is a Cox 2 inhibitor and it has been reported to eliminate Darier-White while you are on it. You would have to be on it long term since it does not take the disease away ( neither do any of the other therapies either). If you would like I can dig up the paper this was reported in.
I do not have personal experience in using Cerebrex for Darier-White.
I would specifically recommend Cetaphil Restoraderm, not just regular Cetaphil Moisturizing Cream.
I do not blame you about being wary of side effects, although I had a patient yesterday, who has been on Soriatane for ichthyosis and has been thrilled with the results ( she is on 25 mg./day).
Your dermatologist is being commendably prudent in monitoring you monthly.
You might refer your dermatologist to the May 2012 issue of the British Journal of Dermatology which discusses the possible use of Celebrex in the treatment of Darier-White. Japanese study. It might be possible to use a lower dose of Acitretin ( say 10 mg.) and a low dose of Celebrex therefore obviating some of the side effects of each. There is far, far less use of Celebrex than Acitretin for Darier-White.
Incidentally, I say Darier-White being a bit nationalistic. White described the disease at the same time as Darier and described the genetics of it. Since Darier was a Frenchman and White an American, I like to give the American some credit.
In sum, I would propose either of these two ideas ( photodynamic therapy and Celebrex) to your dermatologist and offer them as suggestions for therapy.
Please let me know if you have further questions.
thank you, XXXXX XXXXX certainly much more informed & feel as if I have a better understanding of treatment options. The Dr. is a very good Dr. she is very conservative in her management style. We have battled this rash for months now conservatively. However, I have to say, I am at my wits end with this. I have been suffering with it for a very long time & it is quite annoying. So, in conclusion, what I think you are saying is that I must learn to cope with this for the rest of my life. Does it ever go away? she is starting me on 10mg/day of the soriatane. I love your sense of humor. This has been extremely informative. One last question..how dangerous is the soriatane?
I think it is NOT very dangerous at that dose. I have one patient ( not the one I mentioned...she has the same condition, ichthyosis, but MUCH more severe) on 50 mg. a day ( and it barely keeps it under control, though the patient is very happy with the treatment). Your dermatologist does sound like an excellent one.
Well, now that we know the genetic mutation that causes it, there is hope for a long term therapy. However, if it is in the genes, until gene therapy comes a long way, it is likely this is a life-long condition, like so many other dermatology problems. Sorry.
Thank you! I am truly grateful for all of your insight, research & thoughtfulness. I have alot to share with my Dr.'s due to the very informative process between us. Again, thank you & I hope to have some good newws in the coming days & weeks. I will keep you updated. :)
Have a very nice day/evening!
I wanted to give you an update! I started on the Celebrex, within 3 days I could see a marked improvement in the rash. My GP suggested Nettle & Burdock in addition. I have been treating it with Flurasone cream as well. After trying what the dermatologist recommended for 6 months with no real results, I have decided NOT to take the Soriatane. There are too many adverse SE's that I feel are just too risky. I have been using the "holistic" approach & to my delight! it IS working! I know now, this will be a lifelong battle, but, I have a handle on it. I think that your input with the Celebrex may have been one of the keys to getting it under control, thank you again for all of your support & expertise! I am very grateful.