Psoriasis??? - Let's chat

[skiwee1]

The pool and sun used to help mine...but I took the psoralens and light treatment for years and also take methotrexate now, so when I get in the sun, I break out in a red "blotches". Not sure how much fun my DCL cruise will be when I really need to avoid the sun...we'll see!

Nikkibell - thanks for the input - that is what I'm looking for. More feedback from others is most welcomed

For those of you that have recently been diagnosed - whatever you do don't take steroids! They will clear it up to the point you can't tell you have it...but when they wear off - it will come back 4 times as bad!!! Mostly family practice doctors make this mistake - so stick with a dermatologist for treatment!

I've used steroid creams for years and have never had it come back worse then before. My dermatologist always prescribes those creams when you have mild outbreaks. Luckily it has always worked well for me.

 

[wvjules]

I have it on my elbows and use dovenex and another cream (can't remember its name) alternating days. They usually clear it up pretty fast but as soon as I stop using it it comes back. I'm currently using Dermarest, it helps with the peeling and flaking but doesn't get rid of it completely.

 

[auntie k]

I've used steroid creams for years and have never had it come back worse then before. My dermatologist always prescribes those creams when you have mild outbreaks. Luckily it has always worked well for me.

Let me clarify...Not steroid creams, those are one of the most effective for treating it...but I mean the steroid pills...you usually start by taking 5, then the next day 4, and so on.

Others have asked about treatments etc., currently Enbrel is the latest and most effective - and is relatively safe, but the cost is the kicker.

And if you haven't had it long or do not know - it's an auto-immune disease and therefore nothing topical will "cure it". In 38 years, I've found a few things that work best for me to keep it comfortable. I'll share those with you, but obviously everyone is different.

*the best lotion or cream is Clinique -Deep Moisture, and a little less expensive type is the NEW Gold Bond Ultimate healing in white bottle with gold lid.
*Use mild soap - Caress and Tone & Dove work well for me...(no dial, irish spring, etc)
*Use warm - not HOT water when showering/bathing - the hot dries you out
*I don't like this tip - but it does help- pat yourself dry out of the shower instead of rubbing with the towel...you will retain more moisture.
* I ALWAYS put baby oil on when I get out of the shower, then use the Clinique lotion mentioned above - otherwise, I itch all day long!

I hope you find some of these tips useful. With 38 years of experience, I think I can teach the doctors a few tricks!!!

 

[Marseeya]

My DH has it really bad on his head and has pretty much given up all hope of treatment. I'll have to show him this thread.

Is it hereditary? Because I think my DD has it between her legs

 

[DawnCt1]

My DH has it really bad on his head and has pretty much given up all hope of treatment. I'll have to show him this thread.

Is it hereditary? Because I think my DD has it between her legs

There is a hereditary componant to it. One can have it in their genes according to a dermatologist with whom I consulted and then later in life there may be a trigger. My trigger was losing my Mom 9 and a half years ago.

 

[auntie k]

Is it hereditary? Because I think my DD has it between her legs

Yes, it is hereditary. Usually every other generation is what I have been told. My grandfather had it. And most doctors will tell you that although stress doesn't "cause" psoriasis - for some reason it really aggravates it. I think it's true, because during times of death, divorce, etc., mine kicks into high gear.

Ok, I am no doctor, but here is how it has been explained to me that is in simple terms that somewhat made sense to me.

*it is caused when you produce too many white blood cells and they have no other place to go but through the skin. for those of us with psoriatic arthritis too, these extra cells "crystalize" on our joints - thus causing pain and in my case, deformed joints.
So if you are applying a cream to the top surface of your skin - all it will do is help "treat" the dry spot that is there, but obviously can't "prevent" it from coming through your skin.
On the other hand the new drug Enbrel that I mentioned, and the Methotrexate I take, lowers your white blood count...therefore reducing the amount that comes through your skin. However, Methotrexate is hard on your liver & requires blood work every 6 weeks. It is not for mild cases. Methotrexate it is a very old chemotherapy drug - most chemo drugs lower white blood count...so they decided it would be a good treatment for psoriasis. But again, there are risks involved and you would need to evaluate that.

I have also talked to many people who get it mid-life (which is most normal) and they have a much tougher time dealing with it than I do, because I've basically had it all my life - I don't know any different. So for those of you with spouses that have it - that might be helpful to know. We are living in a quick fix society and it seems crazy they can't cure a "skin rash".

I hope this somehow helps any of you that did not know....if not, I still thank you for chatting with me...

 

[poohqueen]

I have had it for 22 years and I am only 31. I borke out when I was 9...not fun being that young, kids can be mean. I don't really recall any thing rude that people have said to me. I would say I have a mild to moderate case. I work at my consistantly, putting on cream and going to the tanning beds. I find the thing that works the best for me is the ultra violet rays, or being out in the sun. My worst part of my body is around my waist where my pants and such sit, and my lower back. I think because it is covered up all the time and no air or sun really gets to it.
I have asked my doctor about some of the pill forms of treatment, and she does not recommend them to me. She said that some of the side effects could cause me not to have children. So since I haven't had any yet, and would like to have them SOME day, it is not an option for me at this time. I wish it were, because I am SO tired of the creams.

 

[auntie k]

poohqueen - you are the only other person I have known of that had it as a child also. Wish we had the internet when I was a child- I thought I was the ONLY person in the world that had it!!

I would agree that the oral drugs are not for you.....if you want children.

I also don't know that i would take them JUST for psoriasis - I mostly do to help reduce the pain of the psoriatic arthritis.

 

[poohqueen]

Auntie K-You weren't alone...I was there with you. It was really bad when I was little, I can remember crying at night because it was so raw it hurt. My Dad has it as well as my brother and they both broke out when they were 16. My brother has just turned 16, so this is the first year he has had to deal with it. His is not near as bad as mine or my Dad's. Dad is by far as it the worst.

I pretty much keep it under control with the tanning beds in the winter and the sun in the summer. I just wish that there was something that would take it away for a while. I don't know about you, but I just get so tired of working it at it all the time.

I don't if it was you or someone else on here said about it doesn't make sense that they can't come up with a cure for a skin rash.

 

[luvwinnie]

I have P and PA. On Enbrel and methotrexate for the PA. The P responsed ok to creams, but the PA is much worse. These drugs in combo have worked great for me so far.

 

[momof3disneyholics]

I have had it for about 6 years, it started when I was pregnant with my twins. I have it on my legs and feet only, and I can't wear shorts because of it. I am currently looking for over the counter treatments for it. It is the itching that bothers me the most. Can anyone tell me where I can get that Coal, pine tar soap at or any other over the counter treatments that have worked?

 

[Keggy]

I have never heard of an over the counter treatment working for someone with true Psorasis. I could be wrong but that has been my experience.

I have had Psorasis for about 5 years. When I was under extreme stress, I had my first flair up. It does get worse now when I am under stress as well. I have it all over my scalp, it is worse on the edges; a larger circular patch on the back of my left thigh; in both ears, and in my belly button.

I am on Luxiq currently and it works really well on my scalp. It is a foam. However, if I skip a day - it comes back, so I have to constantly pay attention to it. It does not really work on the patch on my leg - nothing I have tried has worked on my leg.

I have asked my dermatologist about a pill I could take but she doesn't reccomend it.

The only stupid comments I have gotten are about how I need to have my dandruff taken care of. Like if I started using Head and Shoulders my problems would be solved...

Kelly

 

[auntie k]

Not to be insensitive, because believe me I understand your frustratiion. But over the counter stuff will only help with the symptoms. I have found that for most people the dryness is the biggest complaint..it causes the itching.

Again, let me recommend Clinique's Deep Comfort moisturizing cream.
It has no perfume so it doesn't burn and it is really good at keep the area moist, which should reduce redness if you have any and really helps with the itching. Clinique is sold at most major dept stores. It is about $20 a tube, but a little goes a long way.

Put it on those spots when you get out of the shower.

 

[goofygirl]

Medicated shampoos with Sulfasalicytic Acid (also known as aspirin) work good on deflaking. I also found Noxema to be somewhat efective.It lightens the redness.

I have had it for over 10 years in various degrees. Nothing really rude was said. When people saw the small patches on my arms they'd just ask if I was allergic to something, or if it was mosquito bites.

 

[auntie k]

Maybe it's just me...but for the life of me, can't understand why people have to be so nosey about other people that obvioulsy have something wrong with them. And not only can they not just observe quietly, they feel compelled to make a comment about it. When someone says something rude or hurtful, I want to return with, but at least it gets better, your stuck with that nose..or something like that. But, I've never had the courage, nor would I want to hurt anyone's feelings.

When I was a cashier once, I had a lady that refused to let me check out her groceries & ask that I not touch anything and another one who refused to take her change from me.
But the worst was when I was a child, we were walking/shopping in downtown Hot Springs, AR and a lady just went ballistic screaming " oh my God, what happened to this child"....needless to say, it was a quiet ride home.

 

[wvjules]

I found something called MG217 at CVS. It has worked wonders. I've only been using it for 3 days and the psoriasis on my elbows is almost completely gone. It has a yucky smell to it but I only put in on in the evenings. (after my monring shower I use Vaseline Intensive care lotion and it helps keep it from getting dry during the day.) I amazed at how well it works. I think in the next few days the psoriasis will be completely gone.

If you havent tried this stuff yet, I'd say give it a shot. If it doesn't work you're only out $13.00.

 

[hockeymom52]

I also have had it for about 10 years. I have had some luck with vitamin E in a liquid form. It has made one spot disappear, but has kept the others in check. I know it is not a cure but it might help someone.

 

[graygables]

My now 9yo DD was dxed with psoriasis when she was 4. She had it all around her eyes, eyelids, nape of her neck, behind the ears, and inverse in her groin area, with a few guttate spots on her torse. The doctors had been IDIOTS about the whole thing and the eye doctor I took her to recommended a derm who walked in, took one glance and said, "OH, it's psoriasis!" She's the first on either side of our families that we know of.

BTW, this was around October and *everyone* was asking if her eyes were "part of a Halloween costume". Stupid people. I wanted to punch them all in the nose. The worst was her groin area. I had been told for 3 years that it was just diaper rash and had switched to cloth dipes, which really helped, but as she got into undies, the elastic would rub right on it. Heebie Jeebie time! I wound up putting her in boys knit boxers and that helped.

We tried the first cream prescribed, but it didn't help, so in the meantime, I started doing some homework and found some herbs that were said to be effective. I pulled out my crockpot and started making salves. I had one for general use, and one I made for around the eyes/more sensitive areas. They worked really well, so the derm asked me to bring her samples. She was impressed, but said they'd never sell b/c it was green (from the olive oil/herbs used) Thank goodness, I wasn't trying to market it, I guess! I did send some to an acquaintance who was so bad they had to move south and she liked it really well, esp on her ears.

I'm getting ready to make a new batch, so I will find the recipe and post it (and my suppliers) here, if anyone is interested.

 

[luv2nascar]

to the poster who wanted to know where to find Coal Tar extract - Neutrogena shampoo. My DH has it on his scalp

 

[Keggy]

Last month my Dermatologist put me on OLUX instead of LUXIQ - the OLUX - works waaaayyy better. I used it for about a week - and everything went away - including the spot on my leg. It came back a couple od weeks later - but I used it again for a couple of days and everything is gone again.

SO - for now I am on OLUX - love it - nothing has ever gotten rid of the patch on my leg before this.

Kelly