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Question
Posted by: Wells | 2004/12/13

Wells syndrome and Cyclosporine

Hi Dr,

I have been diagnosed with Wells syndrome, an extremely rare skin condition. After treatment with Prednisone (corticosteroids) failed, I started with Cyclosporine (Sandimmune Neoral) 100mg per day therapy. I started with this on Saturday (two days ago).

My question is: in all the research I've done on the Internet and also on the pamphlet that comes with this medication it says you need to split up the daily dose into two different doses per day. I was given the 100mg capsules to take it once a day.
Isn't this the wrong way to take the medication? And doesn't this affect how well it will work? I am spending thousands on this medication and I'm also desperate for it to work and want to make sure that the way I'm taking it is correct.

Also, do you know of other cases of Wells Syndrome that has been reported in SA? I understand there's only just over 80 cases in the world.

Thank you so much.

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Our expert says:
Expert ImageCyberDoc

Wells, to tell you the truth, I don’t know what Wells syndrome is. I might know it by a different name, but if there are really just 80 people in the world I doubt that there is more than one in SA.
As far as I know Sandimmune® needs to be taken twice a day for it to work optimally. Your doctor probably prescribed it twice daily, but the pharmacist made a mistake. The best would be to phone your doctor and ask him. Good luck.
PS. If you have any info on Wells syndrome, please send it to me at CyberDoc@mweb.co.za.

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