Title: Pompholyx-Dyshidrosis
Post by: Nick on May 04, 2003, 02:26:44 PM
This message is posted on behalf of Renee
I'm a 44 yr old woman that has just spent many hours on the web looking for an answer. I do believe my diagnosis by my dermatologist is probably correct. I'm classic of all that I read and feel comfortable with the diagnosis. I'm on my third dermatologist and always give up, nothing seem to completely control. I do have insurance but w/the co-pay and time, it once again becomes hard to manage with my job. I'm now on 20mgs of prednisone a day and doing light treatments. This has been ongoing since January and once again I find myself wanting to just give up because I remain the same (sometimes better) than the start of medication and treatment. I have good times and start to feel that control is at hand. Then all the sudden I'm flaring up, itching and swelling. In reading several articles I found several things interesting and have noted for someone to respond to.
My hands are moderately affected but my feet are sometimes so bad it is hard to wear shoes or walk. It has been on going for 3 years.
I do seem to have pronounced sweating of hands.
I count money every day. But just in the morning (not all day) I work at a desk sitting most of the day and handling lots of paper work.
At the same time this started I experienced hair loss, thinning that has become embarrassing and hard to wear several styles.
I started having toe nail fungus that is now so bad that my toenails are yellow and breaking off almost down to the bottom of nail bed.
I'm depressed most of the time because it effects my life so. It limits me and some days I have to stay off my feet hoping swelling will subside. It's embarrassing and because its on my feet, I find a just can't explain to any one that I can't be on my feet all day. They think I'm a wimp and just have a rash. The other alternative is to show them. I have to my closer friends and the look on their face is shock. My family understands but I don't think they really can understand the mental effects. I'm single and have not dated. I have gained weight from lack of walking and exercise. My favorite thing to do was to walk and I no longer can take the relaxing walks that meant so much to me.
In closing I feel there is a common denominator to all my symptoms. I feel that on going treatment is beneficial to the doctor treating me and because of the advantages he is less likely to explore alternative treatments. Why can't I do light treatments at home? Why hasn't possible allergies been explored? Why is he not treating me for the nail fungus? Could there be a link to the outbreaks and the toenail fungus? And why did my hair start thinning around the same time as this started?
I hope someone has some experience or helpful articles I could read to get me on the right track.
Please help,
Renee'
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Title: Re:Pompholyx-Dyshidrosis
Post by: peterb on May 04, 2003, 06:18:07 PM
Renee
First of all, a big welcome to the Forum, I myself suffer from Psoriasis, but this complaint has come up before + we have several members with Eczema who may be able to give advice. Have you had Antibiotic Treatment, or PUVA is meant to be good for this condition. Here is a link offering a wealth of knowledge http://www.dermnetnz.org/dna.eczema/info.html. As I say a few other members may give some good advice. So check the boards regular. Let us know how you get on, plenty of other boards here to share a laugh, let of steam or have a good chat. Hope everything works out for you.
:) :) :) :) |
Title: Re:Pompholyx-Dyshidrosis
Post by: peterb on May 04, 2003, 06:34:40 PM
| Also, I found this for you. A tiny percentage of individuals with the disorder note flares after ingesting metal salts, specifically chromium, cobalt, and nickel. Also forgot to mention, you asked about Nail Fungus, the standard medical treatment is Lamisil Tabs, but this takes 6 months and can lead to other complications. Have you tried Vicks Vapour Rub, this kills nail fungus, I have told other members, who have used it and it does work. :) ;) :) ;) |
Title: Re:Pompholyx-Dyshidrosis
Post by: Nick on May 04, 2003, 07:06:56 PM
Hi there Renee,
Welcome to the Forum :hi:
I'm pleased that you found us :)
You can rest assured that regardless of your condition or of your own self-consciousness, you're certainly among friends here.
Many of us have experienced very similar mental anguish as you describe, in itself it can be a contributing factor to ongoing skin problems for many people.
The mental battle is just as important as the physical one we fight with medications and treatments. You're right, it is almost impossible for others to know how you feel, they see a rash, they don't have any point of reference to understand how you are suffering - that's something that we do understand from our own bitter experiences.
You mentioned that you are currently using prednisone but you were asking after home light treatment? From my understanding, docs normally prefer to supervise the use of this as a treatment. Apparently there is a high risk of patients over-prescibing their dosages of light in the hope that it will speed up the effects of it, usually that results in more danage to the skin. Full blown PUVA or PUVB treatment can only be carried out at a proper clinic because of the severe controls required for its use.
Have you thought about getting together some hard evidence to put in front of your derm?
Often they sit up and take notice when they see that you really do know your subject.
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Title: Re:Pompholyx-Dyshidrosis
Post by: peterb on May 04, 2003, 07:22:40 PM
Renee
I am guessing you live in the States by your letter. Even in the USA, you can get a prescription from a Doctor for home UVB equipment. I was just looking at a website, and new Phototherapy Units are $1700 and Secondhand $650. ;) :) ;) :) But as Nick said, you wont get PUVA or PUVB for home use. |
Title: Re:Pompholyx-Dyshidrosis
Post by: Renee on May 04, 2003, 08:16:05 PM
Peterb & Nick,
Thanks so much for your Welcome. I guess I was in a blue mood yesterday. It was sunny and I was in the house. Today is raining cat's & dog's and everyone is in the house. I have learned more in the last two days on my condition than in 3 years. I also know now that I'm not alone.
My Derm wanted to do MTX but I read the side effects and decided not. I'm on 20mgs of prednisone a day, PUVA, and Ultravate ointment. I'm interested in more natural ways to help. I'm in the States and my Derm states mine is the most severe case he has treated. After reading all about the others I wonder now how experienced he is. Should I try a 4 th Derm?
Thank you Peterb for the nail fungus tip. Wow!!! What a great one.
A big Thanks,
Renee' |
Title: Re:Pompholyx-Dyshidrosis
Post by: peterb on May 04, 2003, 08:30:34 PM
| I dont use hardly any presciption stuff now, one thing that will help is moisturisers, i use these by the bucket load. When Fish from Australia comes online, he should be able to help, he's our resident alternative expert. Have you tried Manuka Honey, it has to be the active Manuka, I know a lot of skin patients who have success with it. It is even being used now to treat MRSA. :) :) :) :) |
Title: Re:Pompholyx-Dyshidrosis
Post by: peterb on May 04, 2003, 08:35:55 PM
| Have a look here, loads of info http://www.just-lotions-links.com/eczema_pompholyx.htm |
Title: Re:Pompholyx-Dyshidrosis
Post by: fishs on May 05, 2003, 09:28:21 AM
:hi:
Hello There Renee'
Welcome along. I hope you will enjoy your stay with us .. Everyone here is helpful and will offer support and assistance.
Yes this condition can be very difficult. It also can be diagnosed as either a dermatitis or eczema variant. Either way precise diagnosis can vary depending on the derm. Have you had a patch test done by either of the derms ?
this should show if you are allergic to any particular thing .. Also It should give an indication re any irritants etc .. The condition is irritated by many things like the powders , soaps , chemicals etc.. I note that you count money .. Some times with this condition money is an irritant.. It also carries and contains bacteria which is a major problem.
Keeping any fungal and other bacteria and infections at bay is most important.
I would use Tea Tree oil on the nails .. It is excellent .. It will kill any fungal bacteria quickly and clear them up. It must be the pure 100% Tea Tree Oil though , not the water soluable stuff or the 15% or 25% type .. This W/S Tea Tree is a mixture of water, alcohol and whatever % of pure oil as stated .( ie 15% or 25%)
Many of the lables on tea Tree Oil are very misleading . so please check.. I say this because any bacteria present in the fungal nails will not survive or multiply and grow in pure oil. they will in a water and alcohol solution.
On the Natural Moisturisers .. ok .. these are very tricky .. Personally I would use an oil.. I would use just a light virgin olve oil. thats all I would use .. I have a problem with the creams depending on the condition and the severity of any infection or irritant factor. ( most so called natural cream moisturisers use standard bases which are the problem) usually the bases make up around 86% of the total volume and they are almost all one of the following. Aqueous cream , Soft white parrafin wax or soft white petroleum jelly, all of which are petroleum bases and are irritants in themselves . That"s before any actives, perfumes, emollents, emulsifers and soluablisers are added. Many also have a chemical cleansing agent added as well.
Well I have rambled on a bit sorry..
Hope that may help you .. Renee'
Feel free to ask questions and I am sure others will respond also.
Fish |
Title: Re:Pompholyx-Dyshidrosis
Post by: Val on May 05, 2003, 03:45:08 PM
:hi: Renee,
Welcome to our forum ;D pleased to have you with us.
I think you've had some good advice already and don't think I can add any more, I have *P (psoriasis) not *E. One thing we have found here, is that all the skin problems seem to thrive on stress, therefore try not to let it stress you out (much easier said than done, I know).
Please do not feel alone with your skin any more now you have found us. We offer support to each other as much as possible both in the bad times and the good. If you feel like having a good old rant, then feel free to go into the 'Rant n Rave' section (down near the bottom of the main forum). Let all that steam out and a load of us will come and join in with you. ;) Also we have a good social club, funny pages and bar/tea room, have a read through I'm sure you will get a few laughs, which always makes us feel a bit better. If you like shout in a round at the bar, guaranteed to make friends that way, and you can use that cyber credit card that you got issued when you joined. :lol: 0% interest and an endless limit. ;)
Again welcome to the family. ;D I look forward to getting to know you better through your posts and maybe in the chat room sometime soon.
:hug:
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Title: Re:Pompholyx-Dyshidrosis
Post by: Monika on May 05, 2003, 06:12:56 PM
Hi Renee,
Welcome to SkinCell! I have *E - for me it's a food allergy. Everyone's given you such great advice so far, I'm not sure what to add. I agree with Fish about light olive oil for a natural moisturizer. When I use a commercial products for moisturizer I use either Neutrogena Swiss Formula or Aveeno. Aveeno oatmeal baths have helped me a lot, too.
Like Val mentioned, check out our Cyberbar and the many other social places on the forum. They will help you laugh and have fun even when you're having a bad day and are totally frustrated with your skin!
Again, welcome! :hug:
- Monika |
Title: Re:Pompholyx-Dyshidrosis
Post by: Renee on May 06, 2003, 12:34:58 PM
Thanks to all of you for your support and advice.
I have stepped up to the plate today and told my Derm I wanted to be tested for allergies. The nurse looked at me and stated that they only look at when not responding to treatment and no known exlainations for flare ups. Hello!!!! and me with out my degree. I stated that since this has been on going for 3 years and after treatment for 5 months-another unexplained flare up and back to square one. Don't want to stay on prednisone. Well, Thursday when I go in for PUVA they are going to set me up with an allergest.
I wonder if an allergy could be behind my hair loss.
I should have done this along time ago.
Again a big thanks to all,
Renee' |
Title: Re:Pompholyx-Dyshidrosis
Post by: Nick on May 06, 2003, 12:56:52 PM
Hi there Renee,
Hey, no need for thanks around here matey :shake:
Thant's great news about the treatment and even better that they are taking you seriously
:clap: Good for you for doing that :clap:
It amazes me when I read through the advice above by the other guys above. So much information and support :up: That's what the forum's all about ;D
Be sure to let us know how your get on with the PUVA :bighug: |
Title: Re:Pompholyx-Dyshidrosis
Post by: Val on May 06, 2003, 05:36:58 PM
:hi: Renee,
Well done for sticking to your guns :clap: It never fails to amaze me how these so called carers just won't listen to their patient more. >:( Ok, so you try their first advice but when that doesn't work for you, why can't they go back to basics ??? You know better how you're feeling than they do, after all.
Hope the allergest helps you. ;)
Can't say I blame you for not wanting to stay on prednisone, I hate that stuff as well. Also that can be causing your hair to thin, it did mine as well as my skin. Hair came out by the hand full, skin still thin from being on it, but my nails grew better than ever. ???
Good luck with the PUVA & allergest.
:hug: |
Title: Re:Pompholyx-Dyshidrosis
Post by: SweetMom on May 08, 2003, 08:53:56 AM
:hi:Renee:welcome to Skincell forum! :).I do not have any diagnosed skin problems presently,but do have undiagnosed skin problems,LOL,am I making sense? ???
Please believe me when I tell you,I would put money on this, you will loose weight when off the prednisone,it increases fat cells,and causes water retention.The water retention can also cause swelling in your face,stomach,legs,all over.You also have another option,you can get a script for water pills,this should ease your swelling,and get rid of extra water retention from prednisone alone.Just be sure if you get a script,that the Dr,does bloodwork to check your potasuim level,if your blood work is usuaslly fine- you shouldn't need potasium supplement.
Also as far as your hair thinning,no matter when it started,prednisone also plays a big part there.This comes from myself and Val- who have both had way too much experience with this drug.I am going to give you the link to my post on steriods as I already posted about this,and don't want to repeat info on the forum,but understand eventhough everything I said was true,it was a tough posting as the person I responded too was not taking prednisone seruiosly.To be on prednisone for a very short period,can help,just please read this post.
http://www.skincell.org/yabbse/index.php?board=3;action=display;threadid=1781
Please don't be so hard on yourself! ;) |
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