My dad had very severe psoriasis due to radiation exposure(he was on the USS Fall River during A bomb testing, then later did some sight seeing in Nagasaki, Japan. Took pictures with his Browning automatic camera--we have the photo album, it's probably hot)! Following Japan he was in a Naval Hospital for nearly six months, since his case was so severe he had internal organ issues. He got a medical discharge due to psoriasis. The Navy guys on his ship didn't know that radiation was deadly.
For many years he took methatrexate(usually a cancer drug) which can have severe side effects, but he seemed to tolerate it well. It kept his skin nearly normal, and he mourned when they had to take him off of it.
he was cold all the time and slept alot I think because of the pain pills he had to take just to stand up. he had to wear a suit made of plastic pants shirt and socks to keep his medicine moist on his skin.
Lord what a suffering diease, he died ten years ago, before maybe this medicine was available .
sounds like they found something at last I hope it works for you, good luck. Are the side effects serious ?
I have Crohn's Disease, EBA (Epidermolysis Bullosa Acquisita - bubbling skin disease) and Fibromyalgia. Anytime you wanna have a gripe session about immuno diseases .. feel free to give me a shout.
I have it. It flares up bad on my legs in the winter and I get spots on my arms. I don't use Enbrel. I have some prescription cream called Fougera that I use only when the itching becomes unbearable (which is rare).
I try to get as much sun as possible which seems to help a lot. This leads to the neighbors asking why I'm working in the yard in shorts when it's 50 degrees (:
I had patches of it. I also have thyroid disease. This year I read a book called "Going Against the Grain" which has had a huge impact. The author/nutritionist wrote this book [with many outside references] about auto-immune disease and eating grains. In the list is skin disorders, thyroid disease, and heart disease [yep---because of resulting high tryglycerides].
I removed all grains from my diet; in seven days I dropped 7 pounds and had some lab work done. My doctor called and told me to cut my thyroid meds in half. He said, "what are you doing?????"
I dont know a lot about it, but...when my son had psorisis, they told me it was allergy related and when we got him tested, he was allergivc to everything...even the stuff his bed pillow was made of. When we got that under control the psoriisis went away and now it only appears very rarely.
I am surprised they told you psoriasis was allergy related. I know eczema is allergy related. I only wish my psoriasis was allergy related and I could do something to make it go away. What did you do to get your son's allergies under control? That is something else I deal with all year too.
Quote from BikerBabe:
quote:
I have Crohn's Disease, EBA (Epidermolysis Bullosa Acquisita - bubbling skin disease) and Fibromyalgia
I've never heard of EBA. It sounds bad (bubbling?) I will have to look it up on the internet. Is it an auto-immune disease? How do you treat it?
I work with a lady who's daughter has Crohn's. She's had it since she was a junior in high school. Thish girl had been chunky (up to a size 18) because of oral steriods she had been taking for other disorders. Once she got Crohn's, she started loosing weight like crazy. She is stick-thin now. She now has Remacade drips every two months, and she seems to be doing well on that.
I have used topical cortisterioids, wrapped in plastic, and have gotten good results as far as the psoriasis looks, but it never makes it go away. It is a bandaid for a week or so. It has been very hard to explain this in new relationships. I used to tape the plastic around my elbows. I did this when I first got married, and my poor husband ended up with tape on his butt....LOL...I can laugh about it now, but back then it was a little humiliating. I've since stopped wrapping in plastic. It made my nightly regime (along with removing make-up, flossing/brushing, and cleaning contacts) even longer.
I've never had to wear a suit, but I sometimes thought that would be easier than wrapping in plastic.
I had considered methotrexate, and even cyclosporin, but the side effects of those drugs are extremely harsh on internal organs, especially the liver. I don't think Enbrel is as harsh, but it could be so new that they really don't know long term side effects. It really sucks that so many drugs (even ibuprofen) take one thing away and give you something else. I guess it's a matter of picking your poison.
I've tried the sun without any results. I lived in sunny areas for the last 4 years. I tan before and during vacations every year, and it never seems to help the psoriasis.
My dad did use the 'space suit.'It was the same type people buy to lose weight. He did weekly sunlamp treatments, which seemed to help. He was retired and in the summer spent many hours outdoors on the golf course every day --he was sure that helped. His skin did get worse in the cold, dry winter.
You are right about the methatrexate and liver. Dad quit using it because they had to do liver biopsies and my dad was allergic to local anesthetics, which made a needle biopsy too dangerous or painful.
He was just beginning to look into grain related things that Dilva mentioned, when other serious health problems flared up.
we used steroids on his skin, zrytec in mouth and flonase in nose...changed pillows, don't let the dogs sleep on his bed---(doesnt help...he's always on the floor with them) so he has cleared up 95%
However, last year, I became allergic to nickel and all nickel alloys (including razors)
I had a third world rash on both legs that nothing would get rid of until I went to the dermotologist and he prescribed a steroid cream 600X stronger than cortaid...have to keep it on for a week. No more cheap jewelry...I nail polis my pant buttons and don't shave that often now.
I remember taking an antibiotic for my sinus condition and it cleared my patches for about a year or two. Now my hand is starting to act up again.
Now, that's the first time I've heard that. I have been on antibiotics a few times in the past year, but I had no results with the psoriasis.
It is really interesting to see what kinds of things helped people. I know one things can work for one person and won't phase another. I knew someone who took red clover supplements and it went away. I tried that with no luck.
I also tried fish oil supplement, evening primrose oil, zinc, and several other kinds of topical medications. The only thing that makes it clear up is the topical steriods.
I'm really hoping for good results with Enbrel because Enbrel works from the root of the problem--the immune system. The dermatological treatments don't treast the cause, only the syptoms.
Psoriasis is not a skin disorder. It is an immune system disorder. Something in the immune system sends out an army to attack something that is not there. The result of the attack is skin cells multiplying at a rapid pace. Normally skin cells die and rejuvenate every 28-30 days. Psoriasis patients have spots which rejuvenate every 4-5 days.
Whoever finds a cure will probably become a rich person. I'm sure when they do, the medicine will be so expensive that no insurance company will pay for it, and nobody will be able to afford it for a long time. I always watch for clinical trials to determine if I want to participate in one.
I've never heard of EBA. It sounds bad (bubbling?) I will have to look it up on the internet. Is it an auto-immune disease? How do you treat it?
I work with a lady who's daughter has Crohn's. She's had it since she was a junior in high school. Thish girl had been chunky (up to a size 18) because of oral steriods she had been taking for other disorders. Once she got Crohn's, she started loosing weight like crazy. She is stick-thin now. She now has Remacade drips every two months, and she seems to be doing well on that.
EBA is related to the Crohn's and 4 out of every million Crohnies get afflicted with it. I'm one of the 'lucky' ones. LOL. It is also an auto-immune disease. I've had Crohn's since I was born, but wasn't Dx'd till 7 years ago. I remember being in 3rd grade when I saw the first little water blister on my hand, it got gradually worse every year. Today when I have a flare, my hands will get covered in the little water blisters and they itch, hurt, seep and get infected, leaving my hands almost totally raw skin.
Here is a picture I took of them a few years ago during a flare. Be warned, it's nasty looking. http://www.xworld.org/pix/bbhands.gif I don't want to link the picture directly into this post, I know not everyone would be comfortable seeing it.
Like your friend, I'm an expert at losing weight, although not by choice. At my low 7 yrs ago I was 72 pounds, which is what got the doctors to finally listen to me and decide that maybe I did have gut pain and there really was something wrong in there .. I wasn't just a drug seeker or a liar. They cut out a little over a foot of my small bowel and now all these years later, I'm finally back up to 90 pounds. Normal for me is 95 to 100, so I'm fairly happy where I am. Of course I'm flaring again now, so I'm again having to struggle to keep the weight on and the pain/weakness has me back into my wheelchair when I have to go out of the house on very rare occasions.
The prednisone I take for the Crohn's when I have a really bad day (when the bleeding/mucus shows), also works to stop the skin disease. As much as I hate the side effects of the drug, I will take it for a few days once a month or so to get the blisters somewhat under control. I've never been without some raw spots on my hands though since I first noticed them so many years ago in 3rd grade, 40 years ago.
I have no insurance, so I can't afford the Crohn's drugs I need to be on. A friend pays so I can see my doc a few times a year and covers the cost of my painkillers which allow me to at least stay out of pain every day. For those that understand chronic pain, mine doesn't fit the little charts, I pass out from mine. LOL, I've become a fixture on my bathroom floor more times than I can count over the years. Such fun .. NOT!
Remacade costs about 4000 bucks a treatment, so you must have insurance to get it. Out of the question for me. Also a Crohnie friend who has had them only did good for the first few. This flare he's having now hasn't been touched by them and he's probably going to have to have surgery soon. I'm glad to hear they are helping your friend. As you said so well, everyone with immuno disorders are affected differently. That is why it's so hard to treat them.
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Bramble
My dad had very severe psoriasis due to radiation exposure(he was on the USS Fall River during A bomb testing, then later did some sight seeing in Nagasaki, Japan. Took pictures with his Browning automatic camera--we have the photo album, it's probably hot)! Following Japan he was in a Naval Hospital for nearly six months, since his case was so severe he had internal organ issues. He got a medical discharge due to psoriasis. The Navy guys on his ship didn't know that radiation was deadly.
For many years he took methatrexate(usually a cancer drug) which can have severe side effects, but he seemed to tolerate it well. It kept his skin nearly normal, and he mourned when they had to take him off of it.
I hope the new drug works well for you!
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mj412
I had a dear friend with this stuff all over him.
he was cold all the time and slept alot I think because of the pain pills he had to take just to stand up. he had to wear a suit made of plastic pants shirt and socks to keep his medicine moist on his skin.
Lord what a suffering diease, he died ten years ago, before maybe this medicine was available .
sounds like they found something at last I hope it works for you, good luck. Are the side effects serious ?
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BikerBabe
I have Crohn's Disease, EBA (Epidermolysis Bullosa Acquisita - bubbling skin disease) and Fibromyalgia. Anytime you wanna have a gripe session about immuno diseases .. feel free to give me a shout.
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Jim
I have it. It flares up bad on my legs in the winter and I get spots on my arms. I don't use Enbrel. I have some prescription cream called Fougera that I use only when the itching becomes unbearable (which is rare).
I try to get as much sun as possible which seems to help a lot. This leads to the neighbors asking why I'm working in the yard in shorts when it's 50 degrees (:
Let us know how the Enberl works out.
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Dilva
I had patches of it. I also have thyroid disease. This year I read a book called "Going Against the Grain" which has had a huge impact. The author/nutritionist wrote this book [with many outside references] about auto-immune disease and eating grains. In the list is skin disorders, thyroid disease, and heart disease [yep---because of resulting high tryglycerides].
I removed all grains from my diet; in seven days I dropped 7 pounds and had some lab work done. My doctor called and told me to cut my thyroid meds in half. He said, "what are you doing?????"
I said, "read this book...."
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DaddyHoundog
I dont know a lot about it, but...when my son had psorisis, they told me it was allergy related and when we got him tested, he was allergivc to everything...even the stuff his bed pillow was made of. When we got that under control the psoriisis went away and now it only appears very rarely.
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Tumbleweed Kid
I remember taking an antibiotic for my sinus condition and it cleared my patches for about a year or two. Now my hand is starting to act up again.
Let me know how this drug works for you.
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Nottawayfer
DaddyHoundog,
I am surprised they told you psoriasis was allergy related. I know eczema is allergy related. I only wish my psoriasis was allergy related and I could do something to make it go away. What did you do to get your son's allergies under control? That is something else I deal with all year too.
Quote from BikerBabe:
I've never heard of EBA. It sounds bad (bubbling?) I will have to look it up on the internet. Is it an auto-immune disease? How do you treat it?
I work with a lady who's daughter has Crohn's. She's had it since she was a junior in high school. Thish girl had been chunky (up to a size 18) because of oral steriods she had been taking for other disorders. Once she got Crohn's, she started loosing weight like crazy. She is stick-thin now. She now has Remacade drips every two months, and she seems to be doing well on that.
I have used topical cortisterioids, wrapped in plastic, and have gotten good results as far as the psoriasis looks, but it never makes it go away. It is a bandaid for a week or so. It has been very hard to explain this in new relationships. I used to tape the plastic around my elbows. I did this when I first got married, and my poor husband ended up with tape on his butt....LOL...I can laugh about it now, but back then it was a little humiliating. I've since stopped wrapping in plastic. It made my nightly regime (along with removing make-up, flossing/brushing, and cleaning contacts) even longer.
I've never had to wear a suit, but I sometimes thought that would be easier than wrapping in plastic.
I had considered methotrexate, and even cyclosporin, but the side effects of those drugs are extremely harsh on internal organs, especially the liver. I don't think Enbrel is as harsh, but it could be so new that they really don't know long term side effects. It really sucks that so many drugs (even ibuprofen) take one thing away and give you something else. I guess it's a matter of picking your poison.
I've tried the sun without any results. I lived in sunny areas for the last 4 years. I tan before and during vacations every year, and it never seems to help the psoriasis.
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Bramble
My dad did use the 'space suit.'It was the same type people buy to lose weight. He did weekly sunlamp treatments, which seemed to help. He was retired and in the summer spent many hours outdoors on the golf course every day --he was sure that helped. His skin did get worse in the cold, dry winter.
You are right about the methatrexate and liver. Dad quit using it because they had to do liver biopsies and my dad was allergic to local anesthetics, which made a needle biopsy too dangerous or painful.
He was just beginning to look into grain related things that Dilva mentioned, when other serious health problems flared up.
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DaddyHoundog
we used steroids on his skin, zrytec in mouth and flonase in nose...changed pillows, don't let the dogs sleep on his bed---(doesnt help...he's always on the floor with them) so he has cleared up 95%
However, last year, I became allergic to nickel and all nickel alloys (including razors)
I had a third world rash on both legs that nothing would get rid of until I went to the dermotologist and he prescribed a steroid cream 600X stronger than cortaid...have to keep it on for a week. No more cheap jewelry...I nail polis my pant buttons and don't shave that often now.
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Nottawayfer
Now, that's the first time I've heard that. I have been on antibiotics a few times in the past year, but I had no results with the psoriasis.
It is really interesting to see what kinds of things helped people. I know one things can work for one person and won't phase another. I knew someone who took red clover supplements and it went away. I tried that with no luck.
I also tried fish oil supplement, evening primrose oil, zinc, and several other kinds of topical medications. The only thing that makes it clear up is the topical steriods.
I'm really hoping for good results with Enbrel because Enbrel works from the root of the problem--the immune system. The dermatological treatments don't treast the cause, only the syptoms.
Psoriasis is not a skin disorder. It is an immune system disorder. Something in the immune system sends out an army to attack something that is not there. The result of the attack is skin cells multiplying at a rapid pace. Normally skin cells die and rejuvenate every 28-30 days. Psoriasis patients have spots which rejuvenate every 4-5 days.
Whoever finds a cure will probably become a rich person. I'm sure when they do, the medicine will be so expensive that no insurance company will pay for it, and nobody will be able to afford it for a long time. I always watch for clinical trials to determine if I want to participate in one.
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Nottawayfer
Dilva,
How did the new diet do for your patches of psoriasis?
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BikerBabe
EBA is related to the Crohn's and 4 out of every million Crohnies get afflicted with it. I'm one of the 'lucky' ones. LOL. It is also an auto-immune disease. I've had Crohn's since I was born, but wasn't Dx'd till 7 years ago. I remember being in 3rd grade when I saw the first little water blister on my hand, it got gradually worse every year. Today when I have a flare, my hands will get covered in the little water blisters and they itch, hurt, seep and get infected, leaving my hands almost totally raw skin.
Here is a picture I took of them a few years ago during a flare. Be warned, it's nasty looking. http://www.xworld.org/pix/bbhands.gif I don't want to link the picture directly into this post, I know not everyone would be comfortable seeing it.
Like your friend, I'm an expert at losing weight, although not by choice. At my low 7 yrs ago I was 72 pounds, which is what got the doctors to finally listen to me and decide that maybe I did have gut pain and there really was something wrong in there .. I wasn't just a drug seeker or a liar. They cut out a little over a foot of my small bowel and now all these years later, I'm finally back up to 90 pounds. Normal for me is 95 to 100, so I'm fairly happy where I am. Of course I'm flaring again now, so I'm again having to struggle to keep the weight on and the pain/weakness has me back into my wheelchair when I have to go out of the house on very rare occasions.
The prednisone I take for the Crohn's when I have a really bad day (when the bleeding/mucus shows), also works to stop the skin disease. As much as I hate the side effects of the drug, I will take it for a few days once a month or so to get the blisters somewhat under control. I've never been without some raw spots on my hands though since I first noticed them so many years ago in 3rd grade, 40 years ago.
I have no insurance, so I can't afford the Crohn's drugs I need to be on. A friend pays so I can see my doc a few times a year and covers the cost of my painkillers which allow me to at least stay out of pain every day. For those that understand chronic pain, mine doesn't fit the little charts, I pass out from mine. LOL, I've become a fixture on my bathroom floor more times than I can count over the years. Such fun .. NOT!
Remacade costs about 4000 bucks a treatment, so you must have insurance to get it. Out of the question for me. Also a Crohnie friend who has had them only did good for the first few. This flare he's having now hasn't been touched by them and he's probably going to have to have surgery soon. I'm glad to hear they are helping your friend. As you said so well, everyone with immuno disorders are affected differently. That is why it's so hard to treat them.
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Nottawayfer
Bikerbabe,
See your PTs.
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BikerBabe
Hehe .. seen and answered.
:)-->
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