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Protopic

Posted , 11 users are following.

bennetta
bennetta

The dermatologist today switched me to cobestol in the morning and a protpic at night. I just applied it maybe 30 minutes ago and it has made the itching so much worse. The derm said there would be some getting used to it, how long is this supposed to last? Has anyone else had this course of treatment and did it work? The clobestol was working, she was just weary of putting me on it for a long period of time. 

1 like, 37 replies

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  • Morrell1951
    Morrell1951 bennetta

    Posted

    Hi Benetta,

    As I just posted on the most recent discussion, my gynae is not happy with my level of LS after 18 months on clob, so she prescribed Protopic. It wasn't until then that I learned the reason doctors prescribe it as a last resort. It's just the cost. They're afraid to precribe it to women who would be served well by the much less expensive clob.

    There are no side effects at this tiny level of topical use. Anything scary you find online about it will be about oral dosages meant to prevent organ rejection after transplant. I'm now very optimistic! If you hadn't posted this topic when you did, I might have resisted thi change in medication.

    I'm applying nightly for a week, then twice a week permanently.

    • hanny32508
      hanny32508 Morrell1951

      Posted

      Hi Morrell,

      Interesting change to Protopic, just the cost?  Does it surpass Glob in a significant way?  

      Could you describe how it works better than Glob for you?  

    • Morrell1951
      Morrell1951 hanny32508

      Posted

      Oh, I can't say, I only started yesterday. I'll certainly keep you posted.
  • Guppy007
    Guppy007 bennetta

    Posted

    Honestly that sounds like a lot to me if you are doing it every single day, and of course it all depends on the amount you are putting on, it has to be tiny! the only time I used the cream twice daily was when I was first diagnosed, and my labia minora was pure white, and it was an emergency ha ha!

    Also I am not sure if you have heard of the expression "if it ain't broke, dont fix it!!

    it just seems odd to mess with something that was working for you...my 2 cents.biggrin

     

    • Morrell1951
      Morrell1951 Guppy007

      Posted

      Clob was working for me to a point. Not very satisfactory if the gynae feels I could stop having a white area and tears. That would be very good. I wouldn't have asked for Protopic if she hadn't offered it, because based on what I've heard in this forum (except here) is that clob is as good as it gets. This discussion made me look it up to see what the downside was and I did wonder if maybe it would work better. For two years I've only read that it is prescribed when clob doesn't work. I had no idea that it was prohibitively expensive in the US. Here in Canada it's three times as expensive, but still affordable at $170 a year. I'm using a miniscule amount daily for one week, then twice a week. Did I maybe mis-type and say twice a day?
    • Guppy007
      Guppy007 Morrell1951

      Posted

      Morrell...  I was referring to bennetta's opening post where she mentions using the cream twice a day, not your post! I think Its good to try new stuff, so good for you on getting  the opportunity to try Protopic, its a shame its so expensive though as that will definitely stop some people from getting to try it, and so I will be interested in how you get on with it.
    • Morrell1951
      Morrell1951 Guppy007

      Posted

      Thanks, Guppy. To be a bit clearer about my decision, I used milder topical steroids for decades on my psoriasis, so I've wondered whether I might be a bit resistant to clob, even though I quit the other creams around 2000.

      The heat only happened the first three nights.

       

  • Cuppa_T
    Cuppa_T bennetta

    Posted

    Hi Bennetta

    I have been switched over from Dovate (clob) to Protopic as well for LS and first application of Protopic made itching so much worse and flare-up of white/grey lesions again. Do I have to bite the bullet? The derm said there would be a warm burning sensation but did not mention there would be this intense flare-up and itching. How long does this last and did the Protopic work for you?

    • bennetta
      bennetta Cuppa_T

      Posted

      Hi! I ended it being allergic to it..not a good experience..I am allergic to one they say don't use if your allergic to that one..my derm didn't catch it but I did after getting home and researching more. I called our nurse advice line she said it should be ok but I was still worried. I called my derm next day and she gave me something else (elidel)..so rather than throw the Protopic away I threw it in my med bucket...anyway I am only using clob/elidel as needed...they wanted me to do two weeks on week off but I don't have issues all the time so I do it maybe once a week every few weeks. At one point I had a pretty bad flare up so I grabbed what I thought was the one I knew was ok..put probably three times what I am supposed to use put of desperation for relief and head to bed. An hour/two later I woke up and I was itching horribly, worse than I've ever experienced...realized I use the protopic instead and probably was in fact allergic...i took an Atarax and was fine an hour later. I should've thrown it out..so its out now! Elidel is what I use with clob on the days I need something and it burns a bit but it gets better.
    • Cuppa_T
      Cuppa_T bennetta

      Posted

      Hi Bennetta.  Will research a bit more with regards to being allergic. Apart from the LS, it even made my Lichen Planus on other parts of body flare up. Went back to using Dovate and both have calmed down dramatically. Thanks for clearing things up for me a bit. Take care.
  • Morrell1951
    Morrell1951 bennetta

    Posted

    I've been using Protopic for three months now. I get itchy three days after the last dose, which is time to apply it again. I've only had one stressed-caused tear and it healed in two days. My gynae says a certain amout of pale coloration is just age (I'm 63). She was very pleased with my condition a few weeks ago.
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