Protopic

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Has any one used protopic? If so, how long did it take to start feeling a difference - mainly itching?

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  • Posted

    Hi, Staci, Yes, I'm on Protopic. I do protopic on T/T/S/S and my steroid on M/W/F. I've been doing it for a month. Here's what I experienced:

    1. First week - heat (I wouldn't call it burning, just heat). Ranged from an hour, to 12 hours to barely discernible.
    2. 2nd & 3rd week - itching. The worst was the 2nd week, but on the weekends, when I used it 2 days in a row, it was more. Not terrible, but there.
    3. I still get a tad of the itching in one specific spot (the spot where I was biopsied), mostly when I do the 2 days in a row.

    It seems like the itching is slowing going away. It's not bad enough for me to stop. I find a bath is soothing. The steroid seems to kick the itching almost immediately.

    I don't know why it is...I've convinced myself it is akin to the cells healing (ha!). sort of like how the body feels with a scab or sunburn.

    One other thing: about 2 weeks into the protopic I ended up with a UTI. I've been really religious about process - washing hands before after applying creams, using a bidet to clean before patting dry, absolutely no double dipping into cream pots/tubes, and front to back wiping. Got the UTI anyway. I "suspect" that the protopic makes one more susceptible to UTI/yeast, etc...it is an immune modulator/suppressant...so it weakens the immune system. So, if you feel the tiniest hint of UTI or yeast, jump on it asap!

  • Posted

    Hi Staci I have used Protopic and it has worked for me. I didnt take too long. The first night it burned and itched like crazy and I thought the treatment was worse than the disease but the 2nd night I didnt feel anything.

    Here is a post I typed a few weeks ago and perhaps some of the tips written here will help you.

    I empathize with you. I too felt alone but I did some investigating and found what worked for me. I rarely have a flare up anymore and when I do it usually only lasts max 2 to 3 days.

    I did NOT wear underwear for several weeks in the beginning. I was lucky and it was summer so I could get away with sun dresses and skirts. I now wear cotton underwear and wash them in baby detergent and double rinse. I rarely wear jeans anymore and I find the seam in the crotch is irritating. I do wear them on occasion but not for 10 hours a day like I used to. Just for shorter periods of time as I find I become irritated when I wear them too long. I wear soft tights with longer tops or softer material pants with soft middle seams. I sprayed myself with water after every bathroom break. I used Emu oil or Vitamin E cream to moisturize and freshen it up after every bathroom break. ( I do not have to do this now just at the beginning, now I use one of these two creams in the morning and evening before bed or whenever I feel I need it) I bought myself a sitz bath to sit in over the toilet bowl. I filled it with warm warm and sat there for 15 to 20 minutes every night. Then I would use my Protopic which is a tacrolimus cream. My doctor told me to do this because he said the skin in the area needs to be softened up before applying the Tarolimus cream, if the skin is soft, the cream will be able to penetrate deeper into the skin at the heart of the problem. Never used Clob. This protopic will most likely burn and itch the first night and it is normal but this does not happen on the 2nd night and onwards. It could be the same once you are in a bit of a remission, have a flare up and use it again but remember it is only for the first night. I used this cream every night for 3 weeks, one week off, then every night for 2 weeks, one week off and then one week on, one week off. My doctor said my body would tell me when to use it afterwards and I thought he was crazy but you do learn to listen to your body and I became comfortable knowing when I should use it. I dont know your age but my doctor also put me on Estragyn Cream which is estragen cream inserted in the vagina. When I forget to use it after a week or two, my LS acts up and I become very itchy. Not sure if there is a tie in but could be. Hope some of these suggestions work for you. Take care, Gail

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