Author Topic: Protopic - any good?  (Read 2824 times)

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Offline Pascale

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Protopic - any good?
« on: Monday May 03, 2004, 11:39:44 PM »
Hi all,

I have had eczema since puberty (I'm 28), mostly on hands and elbows. Now it's 90% on my elbows. It used to be triggered by sun and heat, but now I have some all year, although less in winter. It's much better than it was, but still drives me CRAZY!! :'(

No treatment that I've tried or have been prescribed really worked. Elidel doesn't do much for me. Is there hope Protopic will help or am I just fooling myself with false hope?

How about Freederm? Any good?

Any other good treatments? I'm desperate not to have any on my wedding day!!!

I know this is not a life-threatening condition, but heck, I can't believe there isn't a really effective treatment out there.

Any advice you may have for me would help. Thanks! ;)

Offline lurker

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Re:Protopic - any good?
« Reply #1 on: Tuesday May 04, 2004, 01:10:50 AM »
:hi: Pascale,

  I was just passing by here and came across your post.

  I have atopic dermatitis (eczema) and I know what you are going through.  There are plenty of others here to who have either eczema or psoriasis and so you have come to the right place.

  I want to ask if your rash appears on the outside of the elbows or the inside?  Meaning does it occur where the skin folds to touch itself right below the bicep or is it on/near the area where you would rest your arms on the table?

  Have you seen a dermatologist?   They can provide more accurate diagnosis than a regular doctor can.

  As for Elidel, I have found that it worked OK at the start but just wasn't up to the task.  Protopic, on the other hand, has worked great for me but the problems with it are not something to brush off.  First, it can make you itch (that's great, huh? ;) )  Second, it can feel like it is burning (like Elidel does at first for some), and third, it is greasy like Vaseline so it can stain clothing, etc.  and leaves residue.

  All that inconvenience, however, is worth it because Protopic has cleared parts of my eczema in a 2-3 day use.  It is recommended that you continue for a day or two after the symptoms are gone just to be sure.

  Never heard of Freederm, but I would suggest that you do the standard things that eczema people are told to do, namely:

 - take lukewarm showers and use lukewarm water to wash hands/face/etc. as hot water will dry out your skin and make it itch.   Go quick on the shower.  If you prefer baths, try some bath oil that should help the skin.

- use a mild soap, such as Dove or Cetaphil or a liquid body wash type.   Such things as Ivory are very strong and could wash the oils out of your skin, making it dry and itchy.

 - after washing/showering/bathing, pat dry, do not rub

 - within 3 minutes, apply a moisturizer.  I always recommend Moisturel, Cetaphil, Curel Fragrance Free, and even Neutragena Norwegian formula products.  Vaseline will work as well.   This is important as you want to lock in the moisture you have acquired from the shower/bath.

- if you are going to use medication, apply it before applying moisturizer so it will contact the skin rather than get blocked out by the moisturizer.  A note of awareness here - if you are using Protopic I believe there is a recommended 20-30 minute wait for the skin to dry out a bit before applying it.  See the instructions or ask your dermatologist.

- In general avoid anything you allergic to.   This is especially true for foods.

- Sleep in a cool environment - heat will make you sweat and then itch and then scratch.

- Air conditioners are your friend.  They help keep the humidity and temperature constant.  While the humidity might go too low with an AC, so try a humidifier in tandem.  Air purifiers are also worthy of consideration.

- Use liquid detergent instead of powders as they rinse out better.  Extra rinse is recommended.   Also, wash bedding with hot water to kill off dust mites.  Do NOT use the scented dryer sheets for any reason.

I'm sure a few others will come along to provide more info.

Welcome to SkinCell.  May you find help and heart here.

 - lurker

Offline Pascale

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Re:Protopic - any good?
« Reply #2 on: Tuesday May 04, 2004, 11:24:03 PM »
Hi Lurker,

Thanks for all the advice!

My eczema is on the outside of my elbows, and comes and goes. Sometimes it's on both, sometimes on one of the two, sometimes on both. I even had some really itchy rashes on two toes! I just PRAY to not have any rashes for my wedding (sleeveless dress of course).  That's why I'm willing to try anything out there to help me, despite the side-effects, at least for the wedding!  I'm even willing to refrain from scratching completely if I can muster up the will! And you're right, hot water showers make it worse (actually, anything hot makes it worse) so I'll stay out of heat/sun, and get the A/C going and cold compresses. Thankfully, the wedding is in the fall (October 2) so it's not as bad.

So I will ask my doctor for Protopic since you say it was more helpful than Elidel. If you hear of ANY breakthroughs, pls let me know ASAP!!

Take care,
Pascale :) :) :)

Gobe

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Re:Protopic - any good?
« Reply #3 on: Wednesday May 05, 2004, 12:04:58 AM »
 :hi:

Welcome to Skincell Pascale!

I have severe chronic eczema and Protopic did not work for me.  I hope it works for you.

 :hugs:


Offline lurker

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Re:Protopic - any good?
« Reply #4 on: Wednesday May 05, 2004, 02:21:00 AM »
:hi: Pascale,

  Unfortunately there aren't any real breakthroughs in the treatment of eczema that I am aware of other than the release of Protopic and Eldiel.

  I hope it works for you because as Gobe says it doesn't work for everyone.  Please come back and let us know how you do with it.

  It sounds like you have it only in a few particular spots so I would suggest that you consider what these spots come in contact with during the day.   Localized eczema is usually a sign of contact dermatitis.

  The fact that it is on the outside of your elbows is kinda strange (unless it is contact as I said above) as most eczema people get in on the inside elbow crease.   (SC folks - isn't outside the elbows a common site for psoriasis?  and she has it on her toes/feet too... PPP?)  

  Pascale, did you have this diagnosis (eczema) confirmed by a dermatologist?

 - lurker
« Last Edit: Wednesday May 05, 2004, 02:22:31 AM by lurker »

Offline SF

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Re:Protopic - any good?
« Reply #5 on: Wednesday May 05, 2004, 09:21:34 AM »
Hey Pascale,

I suffer from atopic dermatitis (eczema) in various forms, and not to let you down, but I also have used Protopic without any success what so ever.
"The art of medicine consists of amusing the patient while nature cures the disease". Voltaire

Gobe

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Re:Protopic - any good?
« Reply #6 on: Wednesday May 05, 2004, 12:30:02 PM »
:hi: Pascale,

   The fact that it is on the outside of your elbows is kinda strange (unless it is contact as I said above) as most eczema people get in on the inside elbow crease.    

Lurker - I get  *E on the outside of my elbows all the time! (also on the inside crease as welll).

Good to see you back Lurkz!



Offline Pascale

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Re:Protopic - any good?
« Reply #7 on: Wednesday May 05, 2004, 02:44:19 PM »
Wow, I'm disappointed to hear that Protopic doesn't work for everyone. I'm still hoping it will for me.

I've seen dematologists from Day 1 and all they''ve done is given me various creams and didn't really explain what I had, although I gathered it was a form of eczema (there are various forms of course). It's not psoriasis because it doesn't look anything like it, thank God. As for Elidel, I actually had to ask for it after seeing an ad because the derm was just gonna prescribe the same old cortisone cream to me again.

Anyway, since I have nowhere to turn except dermatologists, I'll go back, ask for Protopic or any new treatment I haven't tried to leave no stone unturned. If that doesn't work, I can just keep waiting because medecine doesn't seem in any hurry to  find treatments much less cures for this.

Thanks!  :)

Offline aTraxi

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Re:Protopic - any good?
« Reply #8 on: Wednesday May 05, 2004, 05:09:34 PM »
Hi Pascale, welcome to skincell! I have recently finished a course of protopic on an undiagnosed facial rash I have and found it worked very well, taking out almost all the redness. I'm going to try it on acouple of persistent eczema patches on the inside of my elbows, so will let you know how that goes. Good luck, and hope you are clear for the wedding!
"I see, you're one of those boring maniacs who's going to gloat, hm? You going to tell me your plan for running the universe?"
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The Doctor and Dask, in "The Robots of Death"

Offline solar

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Re:Protopic - any good?
« Reply #9 on: Wednesday May 05, 2004, 06:40:11 PM »
Hi Pascale :hi:
I have  *E on my elbows hands feet worse in hot weather not so bad in winter. Lurker gave some
good advice try to keep cool sweating makes  *E worse moisturise regularly derm put me back on
Fucibet cream. I have tried Protopic it did not do anything for me, just made me itch more.
Keep cool and best wishes for your wedding. :bounce:
                                                                                       solar :)

Gobe

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Re:Protopic - any good?
« Reply #10 on: Wednesday May 05, 2004, 06:42:59 PM »
Solar ~ protopic made me more itchy too! :(

Offline solar

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Re:Protopic - any good?
« Reply #11 on: Wednesday May 05, 2004, 06:55:56 PM »
Gobe Hi :hi:
All ointments make me itch they are to greasy I always tell the doc to give me cream there must be something in ointments I am allergic to.
                                                                     solar :)

Gobe

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Re:Protopic - any good?
« Reply #12 on: Wednesday May 05, 2004, 09:16:05 PM »
 :hi: Solar

I am the reverse all creams make me itchy so I have to use ointments.  When I was patch tested they discovered I was allergic to a common preservatives in the creams.

Ho hum!

 :)



Offline MarieC

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Re:Protopic - any good?
« Reply #13 on: Thursday May 06, 2004, 12:28:23 AM »
Hi,
I am an eczema sufferer too..sucks doesnt it? well ive been using protopic for 2 years or so, it doesnt do much. the first year or so it helped a lot but just like all medications ive tried, ive become immune to them after a year or so. i use the holistic approach towards healing eczema...focusing on the external is only part of the healing process. have you tried avoiding wheat and dairy? thats a start...it has helped me endless

Gobe

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Re:Protopic - any good?
« Reply #14 on: Thursday May 06, 2004, 12:52:50 AM »
 :hi:

Welcome to Skincell bebxmarie!

I have tried everyting I can think of including elimination diets.  Sadly only thing I got was a severe case of wind. :(

I am glad you have found methods that have worked for you tho!

 :)




Offline lurker

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Re:Protopic - any good?
« Reply #15 on: Thursday May 06, 2004, 04:32:34 AM »
:hi: Pascale,

   The fact that it is on the outside of your elbows is kinda strange (unless it is contact as I said above) as most eczema people get in on the inside elbow crease.    

Lurker - I get  *E on the outside of my elbows all the time! (also on the inside crease as welll).

Good to see you back Lurkz!

Thanks Gobe, but I'm only back on a limited basis :(

In regards to what you said above, yes, you can get it on the outside (I do too) but to *only* get it on the outside and nowhere else  (little on the toes/hands I think she said) is very suspicious indeed  :brow:   This could be contact or even P but I'm curious as to the official diagnosis.

 - lurker

Offline lurker

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Re:Protopic - any good?
« Reply #16 on: Thursday May 06, 2004, 04:45:55 AM »
Wow, I'm disappointed to hear that Protopic doesn't work for everyone. I'm still hoping it will for me.

As with all medications, your mileage may vary.   Some people sing the praises of Elidel as it has worked so well for them (thank goodness).  But some say Elidel is too weak or totally useless... As there are different people in the world there are different results from using the same medications.

Quote
I've seen dematologists from Day 1 and all they''ve done is given me various creams and didn't really explain what I had, although I gathered it was a form of eczema (there are various forms of course). It's not psoriasis because it doesn't look anything like it, thank God. As for Elidel, I actually had to ask for it after seeing an ad because the derm was just gonna prescribe the same old cortisone cream to me again.

My GP actually said my Eczema looked like Psoriasis and from the pictures I have seen and the people I have met, these two conditions look very similar, and that is also the sentiment my dermatologist had as well.

I would ask these dermatologists to tell you exactly what you have.  Get them to give you a diagnosis.  And look at their writeup sheets as well (they should be giving you copies of these after the appointments, especially the initial visit).

Quote
Anyway, since I have nowhere to turn except dermatologists, I'll go back, ask for Protopic or any new treatment I haven't tried to leave no stone unturned. If that doesn't work, I can just keep waiting because medecine doesn't seem in any hurry to  find treatments much less cures for this.

If you want to leave no stone unturned I would suggest a trip to an allergist for starters.   Get allergy tested, hopefully patch testing as it is more sensitive than RAST/Blood testing.   Try to choose things that are in contact with your affected area (outside elbows) alot.

But also be very concious of everything that touches the spots where the eczema seem to always appear (outside elbows, you said).   Keep a little book with you and ANYTIME ANYTHING touches your elbow, write down what and when.   I can't stress the ANYTIME and ANYTHING enough here.   For example, you put your elbow on the top of the desk - Write that down.  You lean on your elbow at the dinner table - Write that down.  You apply moisturizer - write that down.  You get the idea here, I hope.   Then you can try to eliminate touching some things to see if it gets better, or do some other elimination approach until you find the culprit.

If you are not seeing any E on other parts of your body then I my opinion is that it is contact related and that can be taken care of easily - avoid the thing that causes it.    I have found that in cases of contact dermatitis, no matter what I use on it, be it Elidel, Protopic, Betamethasone, Diprosone, Triamcinilone, whatever, it just doesn't go away.   But by avoiding the offending agent or situation, it goes away in 2-3 days.

 - lurker

Offline SF

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Re:Protopic - any good?
« Reply #17 on: Thursday May 06, 2004, 08:44:45 AM »
Lurker brings up a very good point about getting tested for allergy's (my favourite topic). Our body comes into contact with a lot of chemicals and metals daily, that we don't even think we could be allergic to any of them (As was my discovery of being allergic to nickel). As Lurker suggests, the patch test is a good way to get tested for allergy's that cause skin conditions. If you're allergic to anything, it's quite painful though...

I had patches of exczema on the outside of my elbows, thighs, and knees for a coupld of months, and decided to switch my laundry detergent. The eczema dissapeared in no time...
"The art of medicine consists of amusing the patient while nature cures the disease". Voltaire