Psoriasis, My Fiancé and Me

[Lexidoll]

My Fiancé has has psoriasis for almost 8 years, however right now it's the worst it has ever been
 We have been together for 3 and a bit years now and have 2 children.
I've supported him fully since he confided in me about his condition. At the beginning I didn't even notice it, but looking back on photos of us in the early days, I can now see it was there.
My poor baby has it over his entire body, scalp, face, chest and back, arms and legs. He's been seeing a dermatologist for over 2.5 years. He tried numerous creams and steroid lotions, light treatment for 16 weeks, methotrexate for almost a year and since Christmas he's been on Acitretin. We've cut out refined sugar and lactose, use coconut oil and even aloe vera. Nothing is helping. In fact right at this present time it's the worst I've ever ever seen it. Some of the marks on him are almost the size of palm on his legs. 
No surprisingly he gets very very upset and down about it. I try my best to support him by putting the creams on him, cooking meals to help his diet. I wash his hair for him,  I've researched the shit out of therapies and remedies to help try and ease his pain and discomfort. I feel a lot of the time he doesn't help himself though. He complains about how bad it is but then doesn't use the creams. I offer to help and he just says later but later doesn't happen. I've advised him to stop drinking and see if it helps as he always has a bad break out the day after alcohol but he doesn't even try to cut back to see if it makes any difference. 
It's really beginning to affect our relationship in that we are never physical anymore. When ever I make advances I am rejected. It's been this way for months now and it's really beginning to get to me. Also his cleaning up after himself. The bath and sink is always full of hair and flaked skin, he doesn't wash it away, it's left to me to clean. We have wooden floors and he will just stand and scratch himself leaving skin everywhere...on the sofa on our bed. Our sheets are all blood and dead skin but he will never wash them or give the floor a once over. I'm ashamed to say that I'm fed up of cleaning up dead skin from everywhere when I've got enough to do looking after the babies. 
I know he can't help it, but his lack of effort is really affecting me now. He thinks his psoriasis just affects him. I can't say anything to him with the fear of upsetting him. But it's upsetting me. It's like he's just given up!
So I've come here, to listen to others, to find other ways to help him or a way I can talk to him without offending.

I can't imagine what he goes through. I hate to see him cry and being in pain. I don't know what else I can do. Now I feel our relationship is suffering and I feel very low and sad about it. 

I don't feel any better writing my feelings out, in fact I feel worse.

[jiml]

Hi Lexidoll and   to the forum, and for having the courage to write on behalf of your fiancé .....but you have come to a great place for support and advice, we don't know it all, but on the site there is a great wealth of knowledge mainly gathered by Fred who runs the site and supplemented be us weary sufferers with our experiences

Try to get your fiancé to come to have a look at the site, it is so friendly and members are happy to ask and answer questions ....or just listen

There is no need to ever be alone with the disease, there is usually a friendly member here to chat with

I see your fiancé had tried most of the oral treatments ......I'm not sure where you are in the world but has he tried the treatment I'm on its called Fumaderm and works differently than methotrexate or acetretin

The other option is biologicals they are very good and could be his answer speak to a dermatologist about Stelara    

I can understand your fiancés reluctance to use the creams they are time consuming and if they are ineffective he can't see the point of using them ......also they are designed for short term application not drugs that should be used continuously

I'm sorry psoriasis is affecting his self esteem and your relationship, you are obviously welcome here and if you could show him some of the members stories here they are not dissimilar to his.
Tell him there is constant research going on and new treatments becoming available, so all hope is not lost

Don't be sucked in by scams and people trying to take your money, her you will not find any spam , or advertising. What is here is just members experiences and the latest genuine scientific news

[jiml]

Here's a couple of links  to look at they may be of interest

Biological Treatments For Psoriasis this one will tell of all the biological treatments

Dimethylfumarates and Psoriasis this will explain the workings of drugs like Fumaderm and Psorinovo

[D Foster]

Hi Lexidoll, I see that you are located in the North ,I assume you mean UK.
I can relate to what you are saying and I can tell you the dam P does get to you ,it makes you very despondent when nothing seems to work ,does he have a good dermatologist or are they content to just see him and send him home with just some more things.
If he has had all the lotions and potions inc MTX and Acitretin then there should be no reason why he should not be able to go onto something like Stelara which in my humble opinion is probably the best bio .
Encourage him to come on the site and have a chat because I have found that if you can speak to people who have P/PsA not the medical staff who think they know everything then you will get truthful answers to your questions from people who know what they are talking about.
It's a fact of life that he who shouts the loudest gets the prize and they only way is to badger the docs etc and insist that something is done otherwise you just get neglected.

Take care and all the best Dave

[Caroline]

Hi Lexidoll,

I feel very sorry for your and your fiancé's situation. It is a very heavy situation for you to not have a normal life, and be married with all aspects that belong to that.
I understand that your life is currently very complicated in what you should do now, as well as it is difficult for your fiancé to get out of his very difficult status.

Both still possible things have already been mentioned, to my idea. Fumaderm (DMF) and Stelara.
These treatments both have a high potential of being able to work for your fiancé. Still they are very different.
Fumaderm is a slow burner, so will require quite some time to start working. But.. it is relatively payable.
Stelara is a biological and in that sense much quicker in possible result, but much more expensive.

Still more biologicals are hitting the roads, so there is more possible in the future for your friend..

You both will have to be very strong to fight your problems, we over here understand that very well.
Anytime you want you can come over here and talk to us, there is always someone around.

Caroline

[Lexidoll]

Thank you for the replies, I will have a look at the links provided.

Are Stelara and Fumaderm available in the UK?

My partners dermatologist seems okay, I've only met him once. Sometimes I think his care is inconsistent as he has had to see different Doctors when his main one isn't available. I think it would be hard to judge if the psoriasis is getting any worse or improving.

The methotrexate did work for a while, but then it returned and along with the side effects my Fiancé was feeling worse than before the mxt.  

I don't really want to direct him to this forum. I've suggested support groups before just to be able to confide in others feeling exactly the way he does but he's not comfortable with that. 
I will look at these other treatments suggested and mention these to him. 

If he doesn't help himself I don't know how I'm meant to. 

I suffered from an illness myself not so long ago. I took help and support of others but it was still down to me to get better and find a way. Which I did for my family as well as myself.  It was very difficult times but I knew it was the only way. 
Inside I want to say to him that this condition he has could be life long. It's all in the management. To find something that works for him. And not to give up. I asked him what he would say to our children if they were suffering with the same illness as him. Would he let them give up?

But he just gets annoyed with me. And shouts and swears. He cuts me off. He looses patience with me and our little ones. 

It's not our fault, he won't let me help and he won't help himself. 
I'm running out of puff with all this :(

[jiml]

Hi Lexidoll thanks for coming back... Firstly yes Stelara and Fumaderm are both available here in the UK .
I'm on Fumaderm myself and have been for the last 4 years, we have members that have been on Stelara long term as well....because as you said it is unfortunately  a life sentence and it's something we all have had to come to terms with as sufferers ......
It's very difficult  for you if he is refusing your help, and you think he would resist being led to a club like this...
I would say stick with us as we are not a conventional " support group" I think we are more than that.

We don't have many rules, members come and either just read the posts or join in ...there is no pressure to do anything ...if he were to read some stories on here he would find we are all in the same boat and there is so much to learn about controlling the disease .

If he were to venture into the off topic section he will find the posts in there very different and he might even enjoy some of the jokes it could be a way to lead him in

I admire the way you are fighting to make your relationship stronger and get it back on course

If you do get him to see a dermatologist again ....go with him and tell them of yours and his despair and your relationship needs help...as your quality of life has gone wrong ...the dermatologist knows it's more than just a skin disease it has a big psychological impact on lives and should be prepared to offer a solution

[Turnedlight]

I agree, somehow the derm needs to know your relationship is being severely compromised by the psoriasis.

Also, I just wanted to say that your fiancée might be feeling exhausted by all this, the itching prevents sleep and just physically having skin areas that do not function properly (ie regulating body temp) means he could be very run down and tired. It's not an excuse but it might go some way to explaining why he doesn't feel like lifting a finger to help, why he doesn't feel romantically inclined and why he's snappy.

I do hope you get somewhere soon, it's such a shame..

[mataribot]

I think DMF would be you next best choice. If you are done having kids Acetretin should be on the list as well (wouldn't advise if you want kids). Stay away from Cyclosporine, it's a very dangerous drug. If you fail the pills, TNFs are more than likely the next choice. Hope everything works out.

[Caroline]

As you describe it, he must feel really desperate. That is understandable if you think what he is going through. I bet he has been a very nice man, and I am sure that very nice man is still in him if he is able to get some rest from this awful disease.
Unfortunately he still has to make some steps, that is unavoidable. But if he succeeds he can be back at himself and at you.
I also understand that you are feeling desperate also. The suggestion that was made to go with him to the dermatologist, is that an option?
Do aim for Fumaderm or directly Stelara as that may work faster..

we will try to stand next to you and give you replies, advice and listen to you if you want that.

And I am sure that if he would take a look at our psoriasisclub and might try, that he will find some relief with us.

Caroline