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Palmetun Ekbäck et al. Topical rapamycin tuberous sclerosis clinical practice

A B C

Figure 6: Patient 13. (A) before CO 2 laser and rapaymcin; (B) after CO 2 laser and before rapamycin; (C) after CO 2 laser and rapamycin

A B one could conclude that blood test is not needed in
patients treated with topical rapamycin.
There was a tendency that longer treatment with
topical rapamycin gave better effect. However, nodules
responded less to topical treatment and cephlic plaque
did not respond at all.

We were initially uncertain of the interaction between
rapamycin and ultraviolet radiation, so the patients
were in the beginning instructed to avoid sun-light.
Claims of such interactions have however been
Figure 7: Patient 14. (A) after the last session of CO 2 laser and refuted, as subsequent randomized controlled studies
before rapamycin; (B) after CO 2 laser and rapamycin have shown a reduced risk of malignancies and
non-melanoma skin cancer in transplant recipients
larger than 4 mm did not respond to topical rapamycin. receiving oral rapamycin. [20]
In our observation, all patients who paused treatment
during summer relapsed, which shows that mTOR This is a retrospective observational study. There was
inhibition needs to be continuous. There were also no set schedule for the visits, as some of the patients
tendencies for younger patients to respond better, lived far from the clinics and had other severe medical
which reflect the importance of early treatment. This problems. Many of our patients had the diagnosis
is in accordance with a study by Tanaka et al. [14] who of TAND and could not participate in a standardized
also reported greater effects in patients younger than examination, however it was possible to get photos of
ten years. Five studies reported mild side effects, such all the patients.
as stinging and skin irritation. [6,12,14,16,18] In our study,
8 of 23 patients had side effects, and 2 discontinued Follow-up was done mainly through visits in person,
treatment because of pain and swelling. Six of the but in 3 cases through the use of photos. The
patients who got side effects could continue the grading of treatment outcome did not employ the
treatment with no side effects if they used the solution Facial Angiofibroma Severity Index. That scale has
every second to third day. We used an oral solution just recently been validated and published. [21] So
not designed for topical treatment, as has been we graded the skin lesions in papules, nodules and
[6]
reported in a previous study. This solution contains erythema and discussed the photos with each other in
ethanol and propylenglycol, which might explain some order to reach consensus about our grading system.
of the side effects. On the other hand, the solution is We used an oral rapamycin solution, which might
without oily element and is therefore more suited for have given more side effects. Patients who had not
teenagers who besides angiofibromas could have received CO 2 laser treatment did respond as good as
facial acne. The ex tempore ointment that has been patients who had not received CO 2 laser treatment.
available lately contains petrolatum but could be a One explanation to that is probably that patients with
good alternative for toddlers. We could not detect papules bigger than 4 mm, that is known to respond
rapamycin in the blood of our first 5 patients. This is in less to topical rapamycin, had received CO 2 laser on
accordance to other studies in the field. [5,6,8,10-13,17,19] So these papules. [15]

Plastic and Aesthetic Research ¦ Volume 3 ¦ October 25, 2016 333