Author Topic: Protopic and Sun  (Read 6021 times)

0 Members and 1 Guest are viewing this topic.

Offline lilmiss_p

  • Registered member
  • *
  • Posts: 18
Protopic and Sun
« on: Wednesday July 08, 2009, 10:45:42 AM »
Hi Guys

i have achieved some godo results with Protopic and my face eczema... I use it once or twice a fortnight and its seems to keep things under control. I also sometimes use it on my neck and chest area but sometimes the burning is crazy!

Wanted to ask about going in the sun. I am going on holiday next week, and I know that Protopic instructions says to avoid sun exposure. Does this mean avoid the sun strictly all over the body- or just the areas that are I have applied Protopic to (i.e face and neck)?

Thanks a lot  ;D

Offline Murray Walker

  • Registered member
  • *
  • Posts: 8
Re: Protopic and Sun
« Reply #1 on: Wednesday July 08, 2009, 05:11:13 PM »
Hi there!

I'm not a doctor and for a definitive answer you, of course, need to ask an expert.  That said, I use Protopic the same way you do and have read up about it a little.  Imho you should try to minimise sun exposure all over your body, not just on the face and neck.  Staying indoors all the time isn't necessary but sunbathing wouldn't be very sensible either, alas.  When you go out, try to avoid direct sunlight and use sunscreen.

Most likely this is overkill but until doctors have more experience with Protopic, it's probably best to be careful and follow their advice. :)

Offline Dapper

  • Senior Member
  • ****
  • Posts: 243
Re: Protopic and Sun
« Reply #2 on: Wednesday July 08, 2009, 10:09:55 PM »
Hi, I spoke with my dermatologist about it and he said the idea to avoid sun exposure is basically because of the immune supressant action of the drug, which increases the ability of cancers to form and grow.  It is nothing magic about the drug and sunlight, it is just that with the immune response suppressed in your skin there is a bit more danger of cancer formation, and the sunlight is linked to skin cancer formation [for the exact same reason, because the UV acts as an immune suppressant] so that is why they say you should not go out in the sun and use protopic at the same time.  In theory, the same thing applies with topical cortizones or any other immune suppressant, hence when you take prednisone for example you are supposed to avoid getting too much sun as well.

That is how I understand it.

My own personal feeling is that the risk is way overblown.  Doctors have caused so much more health problems by creating epidemic vitamin D deficiency [from constant sunscreen and avoiding the sun] than they have ever helped in terms of cancer prevention.  It is absolutely ridiculous.  I'm pretty blase about skin cancer, if you get unlucky it will kill you, but 95% of the time they just cut it off and it's no big deal, even with melanoma it is only fatal 25% of the time, and the medical link between melanoma and uv radiation is extremely tenuous, with more and more dermatologists raising a dissenting voice to say that uv radiation has nothing to do with melanoma.

Anyways... Personally, if I was using protopic a couple times a fortnight, I wouldn't even think about it.  That really isn't very much at all.  But if you are planning to go sunbathing a lot or risk getting sunburned then I wouldn't do that and use protopic at the same time.  I think the immune suppressant effect of protopic is pretty localized, and therefore the skin you are not using it on would not share the increased risk from sunlight.

My two cents.
« Last Edit: Wednesday July 08, 2009, 10:15:34 PM by Dapper »

Offline Wiggly

  • Registered member
  • *
  • Posts: 22
Re: Protopic and Sun
« Reply #3 on: Friday July 10, 2009, 04:08:51 PM »
Hi, I wouldn't worry about the immunesuppresant side effects too much either unless perhaps you have REALLY fair skin but even then and this is a one off holiday right? You're not spending all your time in direct sunlight the rest of the time are you?

What I'd be more concerned about is the burning tingling sensation that some people get - hopefully you'll not be one of the people who experience it but I certainly was and it was horrid. My face would go red and feel like it was on fire and as if there were a million needles being stabbed into it. What is interesting is that in the first 6 months I used it I didn't apply it to my face and still experienced this and was still experiencing it later when I only used it sporadically.

I think you should just see how you go.

Offline lilmiss_p

  • Registered member
  • *
  • Posts: 18
Re: Protopic and Sun
« Reply #4 on: Monday July 13, 2009, 09:36:32 AM »
Hi Guys

Thank you so much for the replies, much much appreciated  ;D

Unfortunately when I use the protopic on neck the side effects are horrid. Wiggy, like you, its like needles are in my neck and I scratch so much and its weird how little blood is drawn, almost like there is a shield on the neck. Very unpleasant! Another way of describing the sensation is almost as if my neck was being ironed!
If i have previously used a steroid cream and the neck is not flared, then the protopic doesnt sting as much.

For the face, the protopic is fine and much less burning.

Wiggly, I dont sit in the sun much at all, and I have brown indian skin. I am hopeful that I can still sit and enjoy the sun, but try to avoid direct sunlight as much as possible I suppose. Its really confusing but I suppose I better take precautions..  :-\

Offline Wiggly

  • Registered member
  • *
  • Posts: 22
Re: Protopic and Sun
« Reply #5 on: Monday July 13, 2009, 05:00:00 PM »
Hi lilmiss_p

have you ever tried PUVA for your eczema - ultra violet light therapy? They tried me on that a couple of times and it really did work the first time for a few months but my skin got bad again because I was scratching so badly. The second time I tried it, it still helped but didn't last as long as the first time - mainly because I was scratching so badly.

Anyway the doctor was happy for me to have it again because like you I have brown Indian skin and am quite dark but I didn't see the point. Anyway a few yrs later the protopic became available and they had me using that and it worked at first... but then I just started scratching again and that coupled with the side effects left me a bit hopeless...

I had noticed that my skin always got better when I went on holiday somewhere hot but obviously the heat and sweating would be an irritation and I'd eventually get a small flare up cos I'd be scratching etc... anyway to cut a long story short, after I did habit reversal to stop myself from scratching my skin improved enormously and I also started seeing the good effects that sunlight was having because I didn't scratch anymore.

I wonder if it would help you? UV treatment of some form that is?

Offline lilmiss_p

  • Registered member
  • *
  • Posts: 18
Re: Protopic and Sun
« Reply #6 on: Monday July 13, 2009, 08:26:04 PM »
Hi Wiggly

I havent ever tried UV treatment for my eczema... I have had mild eczema since birth but since getting married last year my condition has flared up on face and neck (never was in this area before this), so keeping it all under control is somewhat new to me as in the past, a short course of topical steroid application would put me into remission for fairly long periods of time.

It all started to get bad a year ago when a few month before my wedding I would wake up with swollen eyes and a rash on my face which would get progressively worse and I had to go on a course of prednisone during my wedding to prevent anything really nasty happening and keeping my condition at bay. Since then I have been taking antihistamines and using Protopic and steriod creams sparingly where required,hence my concerns on sitting in the sun. Wiggly, I have also heard that the heat and atmosphere in other climates can be somewhat beneficial, but likewise the humidity can be very irritating.

I have had allergy tests  - Patch - which came out all negative - and RAST which showed a pretty high number of possible food sensitivities... so for the past few months I have cut a lot of foods out like wheat etc.. which I think has helped a little, but cant really tell. I am also drinking a lot of Aloe Vera juice and taking homeopathic treatment, so I am hopeful and positive that I WILL get better. Or at least better to the extent that I can have a good quality of life. I suffered greatly in the first few months of being married and would hardly go out as I was so depressed and my flare ups would make me very paranoid, especially since they were confined to face and neck area. At the time I was seeing a naturopath who condemned any use of steroid cream but because of this, my situation spiraled out of control and I had to go back onto a course of prednisone. This was big learning curve for me, and I decided that its great go all natural, but there needs to be an element of control. Otherwise you could end up in a bad state. My current homeopath is very understanding in this aspect, and the aim is to wean steroid / protopic use down to the minimum. Heres to hoping.... ;)

Wiggly, how often do you use creams? DO you have periods when you are in remission? I know its early days but I think Aloe vera juive (forever living) is some help..

Offline Wiggly

  • Registered member
  • *
  • Posts: 22
Re: Protopic and Sun
« Reply #7 on: Monday July 13, 2009, 10:01:50 PM »
I don't really have eczema any more - I mean my skin is still eczematous but it's in 'remission' or controlled now that I don't scratch it. It's drier than normal skin and still a little bit rough but compared to how it used to be it's practically normal skin for me.

I have suffered since I was a baby though - with asthma and severe food allergies too. I am the typical atopic person. I've tried everything: steroid creams, steroid tablets, UV therapy, protopic, homeopathy, herbal, chinese herbal etc - they'd given up on me and were going to put me on systemic immunosuppresants like cyclosporin but I held off.

I found this book - The Eczema Solution by Susan Armstrong-Brown. It's a programme of Habit Reversal to stop the itching. For me the scratching had definitely become a habit and was tied up with stressful/emotional situations etc. Anyway I think it can be really helpful but obviously only if you're scratching really badly. For some people their skin is 'flared' without any scratching. It's a difficult one. All I know is that my skin is getting better with each year (it's been 6 yrs since I first used the book). Still got a lot of scars and pigmentation though but that's what happens when you have dark skin - it's much worse and may never go.

I don't really use any creams. I keep a bit of hydrocortisone in case of allergic reactions. I've been using glycerine and water as a moisturiser for the last 5 yrs or so and just recently (literally in the last week) have started using bio oil. I definitely wouldn't recommend using glycerine if your skin is broken as it will sting like crazy (I know from personal experience). I've found that as my skin has healed I can tolerate a lot more moisturisers however I find most commercial stuff pretty unsatisfactory.

What you described - the swollen eyes and rashes on your face sounds very familiar. My eczema used to be all over my body and not so much on my face but every so often I'd get it just as you described on the face (this occurred the most during late teen - early twenties). I'd wake up some mornings unable to open my eyes properly because the eyelids were so swollen and gummed together and my face would be really inflammed and red. The doctors always treated this with antobiotics + steroid creams - they always cleared it up but sometimes it would take a couple of courses. I wonder if that's what's been happening with you? People with eczema apparently have more Staph on their skin than the general population. We also scratch a lot too which increases the liklihood of an infection occurring.

I really feel for you because even though it's been so long I still remember what it was like. It hurts to move, you can't turn your head properly when it's on your neck. You can't smile or make proper facial expressions when it's affecting your face cos that hurts too much too. You end up with this wierd blank expressionless face and people thing you're being funny with them and of course they're staring at you anyway which doens't help with the paranoia...

I don't really know what to suggest because everyone is a bit different. Maybe the antibiotics might be an idea the next time you get a flare? Whenever I was put on oral prednisolone I'd always get a rebound reaction as soon as I came off them - skin flaring up all over again.

I don't know if this would help and it might sting your skin, but have you tried a cream/lotion with tea tree oil in it? That has natural anti microbial properties and might be beneficial for your skin? I think it's a case of keep trying and seeing what works. I know that's not very helpful - sorry. I remember I used to get really fed up when people told me that but I think with eczema it really is a case of a different treatment for each individual.

Offline lilmiss_p

  • Registered member
  • *
  • Posts: 18
Re: Protopic and Sun
« Reply #8 on: Tuesday July 14, 2009, 07:43:59 PM »
Hey Wiggly

Thanks for your response.

Im so glad that your situation has stabalised... when skin is good, eczemas sufferers are so appreciative and we all, like you, never forget the pain, humiliation and often depression that often goes hand in hand with eczema

I am ok at the moment, just sparing use of steroid and protopic here and there, so fortunately no need for any oral medicine. I did a few months ago develop a skin infection which got better with a course of antibiotics. The skin infection then reoccured about a month later, and my homoepath suggested taking Echinacea and using tea tree oil - both helped significantly and I didnt have to take any antibiotics. On a general basis, however, tea tree really dries my skin out so I have to be careful with that although I have had some good results with Lanes Tea Tree and Witch Hazel (recommended on skincell).

I have read the book you mentioned quite a few years ago, and although I can understand the concept, I think in my situation it often gets flared without scratching, esp the allergic kind of reactions I get on eyes and cheeks.

The glycerine is interesting.. do you use a particular brand?

As mentioned, I am hopeful that my situation is under control and look forward to going away and enjoying some good weather. I will try to stay out of the sun, but as you mentioned, I am sure a little exposure wont do me any real harm...  8)