Other Medications & Procedures

Botulinum Toxin and PC (Botox, Dysport)

COMMENTS: “No one fully understands why Botulinum toxin works for PC at all. It helps people with hyperhydrosis (too much sweat), and so the thought is that it reduces the sweat and may, therefore, reduce the blistering. It doesn’t affect what is really going on with the keratin genes. There is no information on the amount of the drug needed for PC injections versus that used for cosmetic (wrinkles) or other treatments. As far as we know, there is no published information on how the drug is stored or retained in the body following treatment for PC. There are studies for other uses of the drug.”

COST: In Sweden, you pay a yearly fee and then everything is free. In the USA, the cost estimate is over $100,000 for a single treatment because of the need to have a general anesthetic administered in a hospital.

Drug Data

Wikipedia has an article on Botulinum toxin, its purpose, and other uses.

Botox — Allergan, Inc.; [1]
Also see wikipedia article on Allergan

Dysport — Ipsen ispen.com
Dysport website

US National Institutes of Health Articles:
Botox
Dysport

Patient Experiences

K6a patient: “I have had the treatments every 2-1/2 to 3 months for the past 2 years. It is not 100% (sometimes works better than other times). One time, the anesthesia didn’t work and it was terribly painful. From that time on, I was put to sleep (general anesthesia) to have the treatment because it hurts too much otherwise. My sister also has the treatments, but cannot use the general anesthesia as it makes her sick. My sister waited a little longer this last time as it is so painful to have the treatments. Our cousin has chosen not to have the treatments.

Side Effects: I cannot read fine print very well, my eye doctor thinks I am too young to have this condition and they think it could be from the Botox treatments as my sister is also having this same effect.”
K17 patient: “Here is some information, from my point of view. There are 3 people in my family who have been treated. My sister and two others have done the treatment several times. I have only done it once. It lasted for about 6 months for me, but it took about 3 weeks before I felt any difference in the feet.

I had to start the treatment with only one foot, and the second foot was treated a little more than one month later. The good thing with that was that you could actually SEE the difference: The treated foot had less blisters than the untreated foot!

The treatment was no miracle. My feet didn’t become painless, but it sure reduced the sweat (the feet got really dry…). It took a longer time before I reached the worst “pain level” after a day of work. I got less blisters and my feet produced less calluses during the time the (drug was) in the feet.

And the needles… in Sweden you get anesthetic. There are two types, either you get full anesthetic (you’re “asleep”) or you get a local one, where they block the ankles and the feet are pointed upwards. I did the last one, and I thought that was the worst part of the treatment! Next time I do the treatment I would rather have the full anesthetic, but the good thing with the ankle-anesthetic is that it is possible to walk afterwards without any problems!

(This) is a drug and it might not be the best solution for the body, but eating painkillers all of your life is not good either.”

Studies

Although other patients with conditions ‘like’ PC have been included in some treatments, we know of only six patients with confirmed PC who have been treated. Five were treated in Sweden and one was treated in Ireland. In the study in Sweden, Dysport or Neurobloc (not Botox) was used. We do not know what product was used in Ireland.