Title: I'm New Here?
Post by: Jeana on May 27, 2003, 11:48:59 PM
Hi Everyone:
I'm new here, but I'm really glad to have found this forum. I've had severe chronic eczema since I was 1 month old and I've been using topical steroid cream for over 30 years. Already I've learned quite a bit from reading your posts and the great links you have on here. Good work! Thanks for taking your time to help others.
I have to say that after reading some of the side effects of long-term steroid use, I'm quite worried and determined to reduce the concentrations I'm using. I would like to replace my betamethasone valerate with hydrocortisone if possible. I used hydrocortisone as a teen, but then when I got on the stronger cream it seems I never got off. Recently I have been experiencing periodic migrane headaches and vomitting for no apparent reason, but then I read that these could be side effects of steroid use and the other shoe dropped. Right now I am typing with cracked red fingers swollen to three times their normal size, but I want to give it a chance before I give up on the reduced-strength cream. The itching can be the worst problem, and I have a job to go to every day, so the embarassment factor...explaining to everyone what's wrong is a pain. Anyway I found two things which reduce the itching. I don't know if they will work for anyone else but here goes...Apple Cider vinegar diluted with a bit if water and dabbed all over the rash eliminates the itching for hours. I use an organic one. The second thing is an insect bite liquid remedy containing lidocaine which numbs the area. These will dry the skin out so you also need a moisturizer probably. Good luck.
If anyone has any information or experience in reducing strength of creams please let me know. Yes, I have visited many dermatologists, but right now I'm not near one. Also I am considering trying Elidel cream as soon as I can get to a Doctor. Anyone tried it?
Thanks,
Jeana :) |
Title: Re:Ill with Flare-Ups?
Post by: fishs on May 28, 2003, 12:02:01 AM
:hi:
Hello There Jeana
Welcome along to the forum ..
Good to see you post and an excellent one as well Good on you .
Hope to hear more from you ..
Re the reducing of the strength of the cream. ..
Not sure which cream you are wanting to reduce ..
Here is one thing you can do if the cream you have is simmilar in constituency and texture .
You could get a small pot of plain white aqueous cream form the pharmecist and mix say two parts of that with one part of your cream .
Thats the best way I know of..
Fish
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Title: Re:Ill with Flare-Ups?
Post by: electric_ian on May 28, 2003, 12:24:13 AM
Hi Jeana and welcome to skincell :hi: :hi:
I am sure you will find a lot of useful information for *E
here..I myself have psoriasis *P ..
I am sure *E suffers will reply to your post giving helpfull information for you..
Ian :) |
Title: Re:Ill with Flare-Ups?
Post by: peterb on May 28, 2003, 08:07:04 AM
Hi Jeana
A big welcome to the Forum, I to am a Psoriasis sufferer, I think you are referring to Betnovate, if you can you should come off this asap, this is one if the strongest Steroids around. There are a lor safer one's now. Also, you mentioned about Elidel, this is meant to be a good cream for Eczema sufferers, although I think you would need to see a Derm for this. Hope you find a cream that helps, and Fish's point is a good one, I use Aqueous Cream a lot. Let us know how you get on.
Dont forget to have a roam around the other boards, plenty of topics, I am sure others will give good advice as well. |
Title: Re:Ill with Flare-Ups?
Post by: Celery Peach on May 28, 2003, 08:11:22 AM
Title: Re:Ill with Flare-Ups?
Post by: Val on May 28, 2003, 03:37:36 PM
:hi: Jeana,
Welcome to our forum ;D good to have you with us.
I have *P not *E but the itching from what I gather is very similar, I shall be giving your Apple Cider vinegar a try ty. ;)
Using topical steroids for over 30 years :o :o :o try and get off em girl asap. ;) Think Mr Fishs idea is a good one, also as Peterb has said, go see a derm as soon as you can as well.
Very pleased to see that you like the forum ;D please do have a good look around. We have a good social club, also a bar/tearoom where we like to celebrate anything and everything. ;) Take a look in 'funny you should say' and have a laugh (always makes us feel better). Not forgetting the Rant & Rave pages, any time you feel down or something really gets to you, go in there an let it out. A lot of us will come along and join in with you. ;)
Now that you have found us, you will never feel alone with your skin any more, we are here to support you. It's what this place is about, in fact when you join SC you are joining a cyber family, that's how we feel around here and that's also why we call it our forum. Be warned though, we are a totally erm a little crazy around here. :crazy: :lol:
Looking forward to getting to know you better and maybe having a chat sometime.
Val :hug:
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Title: Re:Ill with Flare-Ups?
Post by: Nick on June 07, 2003, 07:28:50 PM
Hi there Jeana,
Welcome to the forum :hi:
30 years on BetaM ? :o :o Wow !
That's a long long time and I don't blame you for wanting to reduce the usage of it.
I must be honest I'm a bit surprised that your derm has let you carry on this long on BetaM with your skin still in the condition you described. I'm amazed that they haven't started looking at alternative treatments to deal with it.
The trouble as always with steroids is the risk of rebound as you come off them. It would require a very carefully monitored change over from BetaM to something like Elidel (pimecrolimus).
Results from Elidel have shown to be very encouraging and it's one that we have been watching very closely here.
We have had results for members on the forum. Have a look at
http://www.skincell.org/yabbse/index.php?board=3;action=display;threadid=2351;start=msg29277#msg29277
http://www.skincell.org/yabbse/index.php?board=4;action=display;threadid=2266;start=msg25797#msg25797
http://www.skincell.org/yabbse/index.php?board=3;action=display;threadid=2001;start=msg22791#msg22791
I really hope that they get you off BetaM as soon as possble and that something like Elidel works for you quickly and effectively.
It certainly sounds like you have been having a nightmare of a time with it Jeana :bighug: |
Title: Re:Ill with Flare-Ups?
Post by: Jeana on June 14, 2003, 09:01:45 AM
Hello, again:
Sorry to be so long in saying "Thank you" to those who welcomed me to the forum. A big "Thank you" for your kindness!!!!Also to Nick and Fishs for the information. I had a few bad weeks with trying to get my steroid concentration down. At first I had no luck and my hands were terrible. So I gave up trying the reduced -strength cream and just used the normal one as necessary to clear up the worst of it; then I switched to using it about once a day instead of twice.I also knew that I was allergic to wheat products but I was still eating a lot of bread; so I've cut way down on it, substituting rice, and that seems to be helping. Also I discovered a rice-based emollient cream called "Smile atopi" developed in Japan by, believe it or not, a sake company and a University in partnership. This is supposed to be a kind of barrier cream for dermatitis. Since I've been using it, I've had some improvement. I'll let you know if it continues. Since I can't read Japanese very well. I'm not sure how it works, but pretty sure it's just a good emollient. If I get good results, I will let you know in case anyone wants to try it. Yes, I live in Japan. Still trying to get to a dermatologist to try the Elidel or Protopic. Thanks again to everyone for their warmth and support.
Jeana :D |
Title: Re:I'm New Here?
Post by: lurkeradmin on June 21, 2003, 05:35:10 AM
Hi Jeana,
I have eczema I used to swear by betamethasone valerate as well as Diprisone/Diprosone. Those two worked wonders for me, particularly on my hands. I haven't used that stuff in a while, as I have been lucky enough to dodge the bullet for the most part on my hands. When I do get it, it can usually be traced back to something (doing dishes without gloves, using hot water for my hands, etc.) I would avoid normal soap on the hands, and also avoid hot water. Lukewarm is best, cold will feel better.
I find the docs like to prescribe Triamcilone now more than those two... Go for protopic or elidel if you want to come off the steroid meds. I find hydrocortisone gives me acne ??? , and isn't that a steroid medication also?
I recently was given elidel and I am on the fence about it right now. I am holding judgement until a week into it. At this time it seems to have helped (at least the burning sensation has gone away for the most part :crazy:
Additionally, I would make careful note of what you are putting on your hands, and trying to determine if you have made an improvement or made it worse. This is how I figured out I was allergic to lanolin. Lanolin is in a lot of moisturizing products and even in Aquaphor, Eucerin, Lubriderm, which are some of the most popular over-the-counter treatments for skin problems.
Another possibility is nickel allergy or some other type of contact dermatitis?
- lurkeradmin
|
Title: Re:I'm New Here?
Post by: Monika on June 21, 2003, 05:50:18 AM
Hi Jeana,
I have Eczema too... I have to follow a gluten-free diet to avoid flareups, and sometimes I use a mild topical steroid (it's REALLY mild).
You've gotten such awesome info so far, I can't really add to it, so I'll just say hi and welcome!!! :)
- Mon |
Title: Re:I'm New Here?
Post by: Jeana on June 25, 2003, 05:49:27 AM
Hi again:
Thanks for the information on betamethasone and alternatives. Please post what happens with the Elidel. I'm anxious to try it as soon as possible, probably I will be able to get to a dermatologist this summer, but I will have limited time so I just want to get as much info as possible especially from those who have actually tried it. I am allergic to lanolin. I don't use moisturizers with it. As for the other stuff, I use gloves for dishes but there's still all that stuff in the shower. Haven't figured out how to keep shampoo and conditioner off my hands yet. :)
Really, though, I strongly feel that (my) Eczema has almost nothing to do with outside agents, they just irritate skin that's already irritated. I believe that there's a strong food or ingestion element in Eczema. It's readily apparent that when I eat milk products my skin reacts very quickly. Now wheat, too, and probably there are more which I'll have to eliminate. The Doctors who ignore this connection are fools, in my opinion. As a child and young adult, I was also bludgeoned with the "It's all due to stress arguement" ( and therefore your fault if you would only calm down). I heard the same thing about my asthma for years but the week after I cut out milk products I never got another attack and before I had many all through my ,apparently, stress-filled babyhood and childhood. Sorry if this sounds angry, but none of those Doctors knew what they were talking about, and I guess it was easier to "blame" stress and the patient than find a real cure.
Avoiding wheat is not so easy; it's hard to make sure there's none in products when you can't read the ingredients, so I have to stick to a simple diet. Monika, can you tell me exactly what foods contain gluten besides rye and wheat? Would it also be in spelt, do you think?
Thanks to everyone for the information and continuing support and Val, I just wanted to say the warmth of your welcome post touched my heart. Thank you.
Jeana
ps Can anyone tell me what LOL means? It's driving me crazy. No, not from Mars, just Japan. ;D |
Title: Re:I'm New Here?
Post by: Val on June 25, 2003, 02:51:01 PM
:hi: again Jeana,
Yeah the lol drove me mad as well for a start :lol: seem's there are 2 meanings, lot's of laughter and laughing out loud. ;) I like both so use both and also this little one too :lol: which is :lol : but no spaces. ;)
Coming off the steriod creams can be very hard I know, I also have to come off them and any type of steroid tablets very slowly myself, so hang in there. :hug:
As for keeping shampoo and conditioner off of your hands while showering, I use a pair of exam gloves. The one's that docs and nurses use when examining us, they certainly help me and we can buy them from a pharmacy here so ask.
Think there will be many here that understand just what you mean about docs and stress. >:( Yes stress can make our conditions worse but I don't believe that it can be the sole cause of our skin problems either.
I hope you do manage to get your diet under control, it must be extra hard when you are unable to read the ingredients. Whaaaat am I saying ??? every time I visit a country I have to find out what they call onions and how they spell it before I can eat anything. ??? I have a very bad reaction to them with my crohns not skin. Like wheat it is hidden in many things that you don't expect. >:(
How lovely to live in Japan :D may I ask have you lived there long?
Take care, hope things soon start to look up for you.
Val :hug:
P.S. The 'T' word really isn't needed around here, we all support each other. ;) |
Title: Re:I'm New Here?
Post by: lurkeradmin on June 26, 2003, 03:30:00 AM
Hi again Jeana :hi:
I heard the same things you heard about the stress, and also that I should wash it often and aggressively ??? ??? ??? Wanna guess how fondly I remember my childhood?
Now that I am all grown up and smart ;D I started a food diary. I already knew I was allergic to eggs, but I found out that if I eat anything that has eggs in it or some crustaceans (lobster, crab) I will get eczema flareups. I avoid these things (like gluten, eggs are sometimes hard to avoid as you never know they put eggs in the strangest things). In light of this being a suspected allergic reaction, perhaps you should try some antihistamine?
The Elidel has actually worked wonders for me :up: When I used it for the first time, I could feel it burning a little. Also, the sun felt warmer than usual (you are supposed to avoid direct exposure to sunlight when you are using it). After the first day, the burning sensation went away. It will be exactly one week of use when Thursday rolls around. In one week I have seen more than 75% clearing on my face (the only place I use it is my face - forehead and cheeks). And the best part is that the acne is not coming like it did when I was using a mild steroid (hydrocortisone 1%).
The alternative to Elidel is Protopic but I don't have any experience with that cream.
I would say don't use hot water to wash your hands, don't wash your hands with regular soap, be careful what you are using for soap at work because sometimes they put lanolin in soap for some reason.
Other than the obvious, I am sorry I can't be of much help. Perhaps you should see if you can see a trend (gets better/gets worse) after you do/eat certain things? This helped a lot for me in finding and then avoiding allergens.
- lurkeradmin
|
Title: Re:I'm New Here?
Post by: Monika on June 26, 2003, 03:44:34 AM
| Avoiding wheat is not so easy; it's hard to make sure there's none in products when you can't read the ingredients, so I have to stick to a simple diet. Monika, can you tell me exactly what foods contain gluten besides rye and wheat? Would it also be in spelt, do you think? |
|
The gluten that causes trouble is found in wheat, rye, barley and oats. Oats is a bit controversial, though. So you may want to test that yourself... I find that oats in moderation (a few times a week) doesn't affect me.
It's the hidden gluten that makes a GF diet so difficult. I have a good coach though - my mom is a celiac (diagnosed 13 years ago). So she knows all the ins and outs. Stuff like maltodextrin or modified food starch can contain gluten.
Here is an incredible place to get lists of GF products and other info:
Celiac Disease Online Support Group (http://login.prospero.com/dir-login/index.asp?webtag=celiac&lgnDST=http%3A%2F%2Fforums%2Edelphiforums%2Ecom%2Fceliac%2F%3Ffpi%3Dyes)
Get started there, and always feel free to ask me any questions. If I don't know the answer, I'll refer you to my mom. As a celiac, she has to be super careful. Cheating is absolutely NOT an option for her. :( She even has to get special medicine made specially for her, because gluten is found in many over-the-counter and prescription meds.
That's so cool you're from Japan. I LOVE Japan, it's my favorite place!!! I've been lucky enough to visit twice. Hopefully there will be plenty more times in the future. :) |
Title: Re:I'm New Here?
Post by: Alison on June 26, 2003, 06:44:40 AM
| :hi: hi jeana , welcome to skincell :) |
Title: Re:I'm New Here?
Post by: fishs on June 26, 2003, 10:45:06 AM
:hi:
Hi there Jeana,
Nice to hear from you again..
Yes the gluten is a pain..
If you are not sure if there may be gluten in any product here is is the additive code re any processed foods for you ..
code 622 and 622 e . These are the codes for the additive msg or monosodium glutemate .. If the product contains that then in all probability it will contain gluten .. This may only be in a minute part but msg it is derived from wheat products, rye and barley etc.. and some rices ..
Hope that may help..
Fish
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Title: Re:I'm New Here?
Post by: LittleHarp on June 28, 2003, 04:38:46 PM
Hi Jeana,
Welcome to skincell. I just started yesterday and I am Monika's sister.
Everyone seems pretty nice so far so keep coming back here!
;) |
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