This man I am seeing has the severe kind of P. I am having difficulty in understanding his behavior whenever he gets severe flare ups. From the literature in this website...I am beginning to understand the depth of the effect of this disease to his self-esteem. I always did not think his condition as a big deal. He is a wonderful person, he is full of life...when he catches any respiratory infection, esp. in the winter...he just "disappears" and would come back in the spring. I want to be there for him...he'd rather be alone and deal with it.
What do I do?

PolarBear,
It is hard for someone with psoriasis to think that a flare up does not change the way someone you love does not change things. In general people with p. don't like to have physical contact with others, so it may be a reaction to that that he is trying to avoid.
Be careful when you say that you don't think of it as a big deal, because to your partner it is a big deal. Any attempt by you to minimize it, may create feelings that you don't understand him and you don't know what it is like. You must realize and communicate that to him that you realize it is a big deal to him and that it does not change the way you feel about him.
Tell him that you want to be there for him when he flares. Don't forget that guys deal with things differently then women, especially when it comes to talking about stuff.
Good luck
Shana

Hello Shana,
Thank you for sharing your thoughts. It will take a lot of patience, love, understanding and timing for me to get back in sychronization in his life.
I had sensed in the past a lot of fear. I was not sure where these fears were coming from. I also did not know that he had the severe type of P. I always had wondered why he had difficulty losing weight. He was on neoral for 4 years...now he has PA. PA disables him from work and it has really been frustrating. He's taking Indocin for the PA, and his new dermatologist has advised him not to take neoral with indocin. The flare ups right now are bad. Hopefully, he'd find the right treatment to control the disease.
One question...I was just in the chat room a few minutes ago...and I cannot enter my messages in the chatroom...How do the chatroom work. I chat in other
chatrooms...but this specific room is not working for me. I might need to download something.
PB

Hi PB,
I thought I'd jump in here from a male prospective. I have severe p, which has gotten progressively worse as I gotten older. I can understand how your boyfriend hides, as I generally do the same thing.
I struggle with the idea that it wouldn't bother someone, when it looks so horrible to me. The girl I was seeing didn't seem to have any problem with it...it was me not her that struggled. And I lived in the shadows when it was bad, trying my best to hide it from her, and never letting her see it in the daylight.
Right now I'm not seeing anyone, and to tell you the truth, when I look at my skin at times when it's flared (like right now), I think it's just as well that I'm not, since who would want to be with me looking like this. It's an attitude I need to change, but it takes time.
I was thinking about starting a support group in my area (Phila, PA), because the impact of this disease is so emotional.
I sympathize with your situation. There is emotional support for your boyfriend, and this forum would be a good start.
I'll say one more thing....I found when I was seeing my girlfriend that the more I talked about my psoriasis, the better and closer I felt to her. There's shame wrapped around it, and like any shame, the more you talk about it the less shameful it is. So if you could get him to talk to you more about it, how he feels emotionally, etc, it may be a start for you both.
Much luck, and thanks for your message. I fully connected with your boyfriend's feelings about his psoriasis.
Howard

Hello Howard,
Thank you for sharing your thoughts and feelings. They had helped me understand his feelings better. I was also relieved of the guilt of not understanding and doing enough for him when he feels down over his P.
I also have heard him have that same "attitude"(who would want to be with me looking like this) when he gets the flare ups. He had constantly reminded me that it is not me who causes him to isolate.
I miss him a lot, Howard. I hope he will get better soon. As much as I love winter...I wish summer was here.
Happy New Year! 2003!
PB

Hi All,
From a female perspective, I can agree with the same feelings . Fear of rejection being at the top of the list. Now, we all know that is true for everyone, but because we have p we feel it much more intensely. The connection with shame is quite correct, further debilitating an otherwise viable population of available mates.
However, I am living proof that all can be well. I am blessed with a loving husband to whom I am entirely devoted ( and we have a great sex life ) , as well as 4 beautiful children, only two with the p gene so far.
I suggest to you that if you have found a potential mate who has severe psoriasis, whom you can truely love, you are a woman who has found the golden egg. Grab and run!!
Regards,
PJ Leary

I'm sure that my fiancee can relate as well. He tells me that I am the first woman that has ever touched him, treated him, and loved him unconditionally without complaint. Him leaving his dirty socks around the house bugs me more than his psoriasis does. Mind you, he has erythrodermic over 100% of his body. It's no small business to him and I don't doubt why he wants to marry me. I must seem like a godsend. To tell you the truth, it's not all that easy to live with, but I have all of the love and patience in the world, and that makes a huge difference. He did not ask for this incurrable disease and I will NEVER make him feel like its his fault or like its a bad thing. It helped him to know this too, that I feel this way.
Hope this helps you, Renee

The best thing my fiance ever did was convince me to get tested for food allergies. Changes my diet and my whole life. P is totally gone (except when binge on yeast or mold type products, and/or alcohol).
Not sure if you fiance's case is food sensitive, but hey, if he loves you now he will really owe you one if you solve his problem.
Personally, I think P is purely a result of certain of us less able to push toxins through our bodies. Our bodies just need a little more help. I suffered 30 years.
Bill

Hello Everyone,
Thank you for sharing your experiences, strength and hope in dealing with psoriasis. It is frustrating for my significant other to live with this disease. He still is not that comfortable with p around people. He is pretty picky with company of friends. He would rather stay home and watch TV.
He is also going to try a new treatment, Amevive. Would any one have any experience with this medication? He is going to have the treatment monthly only, if I recall the prescription right.
Soriatane is not working for him.
Polarbear:rolleyes:

Hi Bear,
There is lots of helpful info about Amevive from patints using it on the General Discussion Board.
Regards,

Amevive works very well for a lot of people and marginally for others. I don't recall hearing anyone say that Amevive does nothing for them. Keep in mind that for some Amevive starts working after 2 or 3 shots, but for others no results will be seen until after all 21 shots are taken. make sure he keeps an open mind if results aren't appearing in 4-8 weeks because it can take time. I would ask his doctor why Amevive and not Enbrel, or has he tried Enbrel already. Endrel is used to treat PA and is in the process of being FDA approved for P as well. Enbrel would be my first choise if PA is a factor.

Welcome to the NPF!! You have been given some wonderful advice..Best of luck to you!!! Please don't be a stranger and continue to post...We are always here to listen and lend a hand when we can....

Hi Everyone,
It has been awhile since I posted on the message board.
He had started on Enbrel treatment for P. So far, it has started to clear his skin little by little. The arthritic pains are gone. This treatment has a combination of an oral medication as well. He is immunocompromised at this point and needs to be very careful in catching any infection. He is stable, thank the good Lord.
I want to thank you all so much in sharing your experiences and strength. This community helped us cope with this disease everyday.
Polarbear:)

I am glad to hear that he is startinig to get some relief.
Please come to the boards keep us posted AND encourage him to come here as well. I was someone who always felt that I could deal with the P and PA on my own. When I started participating here it was quite a surprise to me that it meant so much. He find the same.
One word of advice to you both: Never ignore your P because it usually won't ignore you!
Best of Luck and NEVER give up! FlakeyMatt