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Elidel for morphea

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#1 j3ss



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Posted 28 September 2008 - 03:42 AM

(I may have posted some of this information before, but I couldn't find the topic, so I'm sorry if any of it's a repeat.)

After years of remission, my morphea has apparently reactivated. I lost full flexibility in my right knee when it all began about fourteen years ago; now it's my hip. It's nothing too painful or disfiguring right now, and seems to be moving more slowly than the first outbreak, so that should be a good sign. I hardly remember anything about the first time, since I was so young, so it is hard to compare.

Anyway, I went back to one of my dermatologists here in Nashville, and he prescribed me Elidel cream. I delayed using it as long as possible because when I picked it up at the pharmacy, it came with two pages of info about the risk of cancer associated with use of Elidel. No offense, but that's one thing I don't have yet, and I'd really like to keep it that way. I was wondering if any of you here might know a little more about this cream and its use in treatment for morphea. The doctor assured me that there have been no reported cases of cancer linked with its use, but all the same, I'd like a little more piece of mind from someone who's not trying to sell something.


#2 janey


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Posted 28 September 2008 - 05:35 AM

I'm so sorry that your morphea has come out of remission. Hopefully you and your doctor can find something to slow it down even more and put it back in remission. I'm personally not familiar with Elidel, but we did have one article on our site and it was the FDA advisory for Elidel. Based on the first paragraph it appears that the cancer warning

is based on information from animal studies, case reports in a small number of patients, and how these drugs work. It may take human studies of ten years or longer to determine if use of Elidel or Protopic is linked to cancer. In the meantime, this risk is uncertain and FDA advises that Elidel and Protopic should be used only as labeled, for patients who have failed treatment with other therapies. FDA Public Health Advisory.

It goes on to gives it recommendations for safe use - such as use it for short periods of time and a as minimum amount as possible to control the symptoms.

I certainly understand your concerns. I would be concerned as well. I would recommend talking to you dermotologist about this and get his experiences with other patients as well as how long he plans you to use it and if the dose he has prescribed is "small".

Hope this helps.

Big Hugs,
Janey Willis
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#3 j3ss



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Posted 28 September 2008 - 07:05 AM

Thanks for the info, Janey. A lot of that is similar to what I've read, but it's definitely more detailed and that always helps.

I'm really trying to find a good doctor right now. None of them seem to quite understand what it is they're dealing with, and many I have to press for answers. I understand that they don't have them all--no one does--but it would be nice if they'd at least feign a bit of interest for what I'm paying them.

I'd been enrolled in a study by the University of Texas Southwestern in Dallas, but they can't get their stuff together long enough to schedule my follow-up appointment. On top of that, they're trying to charge me for that follow-up visit that I was originally told was part of the study. On top of all that, I'm driving ten hours from Nashville to Dallas for this, and they're being anything but cooperative.

Pardon my bitterness, but it's been a frustrating year. Thanks again for the well wishes. Sometimes that's the best feedback I can get. :)

#4 beedee


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Posted 28 September 2008 - 01:22 PM

Hi Jess!
I have morphea as well, and my dermatologist prescribed Protopic for me, which is also an immunosuppressant ointment, like Elidel, from what I've read. I've been using it for a year now, along with a bunch of other treatments. Protopic also has the cancer warning, and it made me nervous at one point, but I think it is a truly rare occurence.
I've seen my dermatologist on a regular basis for the past year, and he wants me to keep using it, so it can't be too harmful with proper use. He did have me on steroid ointment which for several months, but he told me to stop using it because it is thinning my skin. But the protopic, he says is fine. I do use it twice a day, 3 weeks on and 1 week off. The week break is important he says.
It is so important to have a good doctor, and I hope you find a great one soon! It surely makes ALL the difference. I had a disaster general practitioner before my current one, he was terrible!!!
Its okay to be bitter, all of this is frustrating for sure! Hang in there, and let me know if you need to know anything else! Everything will work out!

#5 Amanda Thorpe

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Posted 29 September 2008 - 12:15 PM

Hello Jess

Sorry the doctors have done more to cause distress than anythig else! I have SSc which began as morphea and have experienced rubbish doctors along the way.

Have you tried contacting any of the sclero experts listed on this site to see if they can direct you?

Take care.

Amanda Thorpe
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