accutane does not cure hs

Excerpts from Research

"Isotretinoin administration (1mg/Kg*/24h) for three months, has not obtained distinct improvement of the clinical pattern while inflammatory reaction has imposed interruption of this treatment and administration of systemic antibiotics (in association with surgical incision and drainage of abscess lesions). However the clinical condition of the gluteal region was aggravated progressively while the risk of transformation in squamous cell carcinoma, existed as well. "  (1)

"Individuals with linear lesions consisting of undermining tracks of follicular epithelium often show only a partial response. These individuals typically have a history of other 'sinus track' disease such as pilonidial sinus and hidradenitis, either themselves or other family members. Hemorrhagic or crusted lesions can be exacerbated by full doses of isotretinoin and patients develop pyrogenic-granuloma-type lesions and even acne-fulminans-like eruptions. Women with adrenal or ovarian syndrome associated with elevated androgens commonly relapse with 6-12 months after isotretinoin therapy."  (2)

"Few patients with severe hidradenitis have been responsive to this synthetic vitamin A derivative. A review of the literature indicates that the results of treatment with isotretinoin for hidradenitis have been at best equivocal." (3)

"RESULTS: In 16 patients (23.5%), the condition completely cleared during initial therapy and 11 patients (16.2%) maintained their improvement during the follow-up period. Treatment was more successful in the milder forms of HS. CONCLUSION: Monotherapy with isotretinoin for patients with HS usually has a limited therapeutic effect."  (4)

"It is suggested that Sebum Excretion is not an important factor in the development of hidradenitis, and this may help explain the generally unsatisfactory therapeutic effect of retinoids in this disease." (5)

"Interestingly, the use of Roaccutane (Roche, UK) is usually ineffective in patients with HS, although it may be helpful for those who have coexisting acne." (6)

"Acitretin may be a promising treatment for severe nodulocystic acne and hidradenitis suppurativa, which require long-term suppression when isotretinoin fails to give long-term remission." (7)

"We report the case of a 43-year-old female with no identifiable risk factor for pancreatitis who developed acute pancreatitis associated with hyperlipidemia while being treated with isotretinoin for hidradenitis suppurativa. To our knowledge, this is the third reported case of isotretinoin-induced hyperlipidemia leading to acute pancreatitis." (8)

"Isotretinoin has not yet been proved effective." (9)

"[...] responded incompletely to a four month course of isotretinoin at 1 mg/kg and tolerated it poorly because of severe headaches [...]"
"[...] did not respond adequately to Accutane but is doing very well on Biaxin and Naprosyn [...]"
"[...] I have been disappointed with Accutane in hidradenitis. [...]"
(10)

"This retrospective study evaluated the long-term outcome of 68 patients with HS (59 women) who were treated with low-dose oral isotretinoin (average dose, 0.6 mg/kg) for 4 to 6 months. Twenty patients did not complete a four-month course of isotretinoin, mostly because of side effects and lack of response. At the end of treatment, 16 patients (all with mild or moderate HS) were considered cleared and 11 maintained a clear status through the follow-up period (mean, 46 months). None of the cleared patients had severe disease prior to treatment. The remaining 32 patients rated their response as unacceptable. Therefore, the authors concluded that isotretinoin is of limited value for the treatment of HS. "  (11)

"Isotretinoin has been used in the treatment of hidradenitis suppurativa with varying degrees of success. We investigated a family of six subjects with widespread hidradenitis suppurativa and treated them with isotretinoin at a dose of r mg kg for 4 months. No improvement was obtained and the subjects noted a flare in their disease activity alter stopping the drug. The rationale for treating hidradenitis suppurativa with isotretinoin is called into question."  (12)
 

What Patients Say
 

Did nothing for me, short- or long-term

"It did nothing short or long term for me. Just the bad side effects. But I have really bad HS (not that there is any good HS) Right now the neuropathy which stems from the diabetes which stems from the HS is as big a problem as the HS. Almost but quite as painful too. The Accutane was just another for me in a long line of drugs tried but to no avail. Sorry I don't have any good news about Accutane but for me it did nothing. Unfortunately nothing seems to do anything to help for me."

Mary

Helped my Acne, not my HS

"I have had HS for 15 years now. I was prescribed Accutane for Acne on my face and to try and help my HS. I was on Accutane for 6 months. My results? I have not had one pimple on my face after Accutane (it's been almost 2 years since I came off it) but it did NOTHING for my HS. One bad side affect of Accutane was that it increased my cholesterol levels sky high."

Faiqa

Couldn't tolerate it

"I was on the lowest dosage of Accutane in the early 90's for acne and boils, HS. My body could not tolerate the side effects which caused me nausea, headaches, excessive dry mouth which caused lips to bleed. I got an over all allergic I call it reaction. MY body could not tolerate it. I felt worse than better as well as it was costly and to frequent blood work checks. So I stopped it within a month."

Clara, Maryland

Never again!

"Tried Accutane about 1988 – Age 34. I will NOT do that again. It gave me Acne Fulminans so bad it ain't funny and then the HS hit me worse than ever. Fortunately, I did not lose my mind. I became an occasional recluse though. When pain got too bad, I was afraid I might lose control and "go off" on somebody. So I hid in my home many times for days or weeks at a time, just going to work and struggling to maintain control. (I don't do well with pain killers … neither do most Doctors.)"

Dave, Ohio

Got worse

I was on Accutane about 5-6 years ago and still had HS. My dermatologist suggested that I go through another round of treatments. I asked my family doctor about this and she said no way!! even with my age (22-23) it was to harmful of a drug!! While taking Accutane I had no relief of HS, in fact if memory serves me it got worse during treatment. I also had elevated levels of what ever it is they test your blood for (I was too young to really care and also excited for this to work). During this treatment the only other side effects I had were stiff joints with some pain. Nothing positive to say, sorry!

Angela

Headaches from hell, swelling of the optic nerve, and anxiety

"I was prescribed Accutane in late May of 2004. The doctor that prescribed the medication to me said that this is a cure & with minimal side effects and stated on how well it will work. The only negative thing that I really had to worry about was not to become pregnant and I would have to go for blood work monthly. Well, this sounded great considering that I have had about 60 of these things removed in the surgeon's office and 15 major surgeries removing areas on my thighs, groin, abdomen & buttocks. So I started the meds at 80 mg a day. Well, the first month was fine no problems. The second month they had to prescribe Xanax to control the anxiety. The doctor said this is normal in some cases. Well, all right my blood work was fine and I also let him know that I was having headaches, not bad but still was taking Excedrin Migraine once everyday. The third month he had to increase the Xanax - the anxiety was even worse. My headaches were getting worse I was taking Excedrin Migraine twice a day with my pain meds and now my Cholesterol was high. Again the Doctor said this is normal in some cases. so I continued on. The fourth month the Xanax was kind of controlling the anxiety, the head aches were even worse and Cholesterol was still high and now my lips were peeling I was getting nosebleeds and my eyes were so dry not to mention my skin. Well, at this point I was not growing anything new but what I already had wasn't going away. Well, the doctor said that he would like to lower the dose to 60 mg thinking this will help with the headaches. So that's what I did. Even with the lower dose my headaches were getting worse so I contacted my primary care doctor asking for headache meds and of course to the doctor I went. She prescribed pain meds (already had those, they didn't work but -oh well- take double dose maybe that would). While I was there she checked my eyes and said that I had blood collected behind them so guess what! To the eye doctor I go. The eye doctor told me that I had swelling in my optic nerve and I had lost some vision so I needed to go for at CAT Scan and should no longer take the Accutane.. She was nice enough to let me know that I hadn't had a stroke after the CAT Scan but, there was something wrong and I needed to go to a neurologist. So I called the Doctor that prescribed the Accutane, told him what the doctors had found. He told me that with the swelling of the optic nerve I was no longer a candidate for the medication. And I should make a appointment to try something else. (If he gave me Accutane who knows what other horrible drugs that he wanted to try. NEVER WENT BACK TO SEE HIM!!!) The neurologist was great and arranged for me to have a spinal tap. I would rather have 100 more surgeries then to have that done again. I had increased brain pressure from the Accutane also from the spinal tap I developed a Spinal headache and ended up in the hospital for 2 days on heavy narcotics. Thought I had a headache before. I was never told of all these side effects and when I asked why I was told that they were very rare. If I would have know of these risk I would have had second thoughts. I stopped this medication in October of 2004 -- here it is Janaury of 2005 & I am still talking medication to control the headaches and haven't regained all the vision that I lost. This medication doesn't work for Hidradenitis. I wish it did. I am now back to having surgery again. "

Dawn

Oh, that's the "cure"?

"[...] In 1999, I was back in the Doctor's office with more lesions. I had them on my breast, and on my underarms. This time they switched my antibiotics and referred me to a dermatologist. The dermatologist insisted he had the "cure" for HS and that it was called Accutane. I went on the Accutane thinking I had the answer, and I got very ill. I turned yellow, my vision went blurry, my skin dried up, the lesions got worse and I got lesions on my eyelids. I went back to the dermatologist and showed him how well his "cure" had worked."

Tammie, Arizona

Back with a vengeance
I was put on Accutane for 9 months... at the time I felt it was helping, only going in once or
twice a month with really bad lesions. But when I stopped the Accutane my HS was MUCH worse. I went back to my doctor 2 months later begging to stay on Accutane for the rest of my life, which you can't!  It did not work in any shape or form the second time around. Now I have chronic dry skin and lips. Luckily it didn't do anything worse to me (as far as we know). Its a dangerous drug and it is not for HS, it is for severe acne.

Becky, West Texas
 

It got worse.. Much worse!

Read Karen L's story here.

References

1. Verneuil's disease treated by autoplastic transplantation
   Constantin E. Kouskoukis, MD(1) - A. J. Karpouzis, MD(1) - A.V. Roussaki, MD(2) - S. Lymbfropoulos, MD(3)
2. Oral isotretinoin. How can we treat difficult acne patients?
   Leyden JJ, Department of Dermatology, University of Pennsylvania, Philadelphia 19104, USA.
3. Hidradenitis suppurativa of the anogenital region: response to isotretinoin.
   Brown CF, Gallup DG, Brown VM. Department of Obstetrics and Gynecology, Medical College of Georgia, Augusta 30912.
4. Long-term results of isotretinoin in the treatment of 68 patients with hidradenitis suppurativa.
   Boer J, van Gemert MJ.
   Department of Dermatology, Deventer Hospital, The Netherlands
5. Sebum excretion in hidradenitis suppurativa.
   Jemec GB, Gniadecka M
   Department of Dermatology D, Bispebjerg Hospital, University of Copenhagen, Denmark
6. Hidradenitis Suppurativa
   Jan von der Werth, Dermatology in Practice, Volume 9, Number 3
7. Nodulocystic acne and hidradenitis suppurativa treated with acitretin: a case report
   Scheman AJ., North Shore Center for Medical Aesthetics, Northbrook, Illinois 60062, USA.
8. Acute pancreatitis secondary to isotretinoin-induced hyperlipidemia
   Jamshidi M, Obermeyer RJ, Govindaraj S, Garcia A, Ghani A.
   St. Anthony Hospital, Oklahoma City
9. Peritoneo-gluteal suppurative hidradenitis
   Kassab S, Servant JM, Banzet P.
   Service de Chirurgie plastique, Hopital Saint-Louis, Paris
10. RxDerm discussion on Dermatology Online Journal
11. Oral Isotretinoin: Not the Answer for Hidradenitis Suppurativa
    Journal Watch Dermatology
    Vol. 1999, Issue 201, 11 February 1, 1999
12. Failure of treatment of familial widespread hidradenitis suppurativa with isotretinoin
    Clinical and Experimental Dermatology
    Volume 11 Page 579 - November 1986