Kirsten, Barbara, and Pam

Kirsten (Denmark)

I started getting a rash in my forehead 3 January 2005. It spread rapidly and I was hospitalized 31 January because of a severe erythroderma. I was sent home after two weeks but was absolutely not able to leave bed because of deep cracks in my feet and a terrible pain all over my body. This caused me to not be able to be touched by anybody, not even a small hug from my 10 year-old or my 2 year-old sitting on my lap. I was totally useless and my husband had to stay home from his job on an oil-rig to take care of the children. I could only manage to take care of myself. I was back at hospital twice after that and I was treated with Neotigason and Methotrexate without absolutely any result at all.

By May I was so desperate I would try anything after 4 months in hell. I agreed on trying Remicade all though I knew it is a drug made for something else and with a lot of possible side-effects. As I saw it at that time I had nothing to lose, it could simply not get any worse.

After the first treatment I looked less red the very same evening and I did feel the pain take off. I was amazed and happy as I thought I finally had found what should make we get well again. The second treatment made no difference, but the third felt as if it really made me much better. After the fourth I was able to start on my job, full time in a day-care-centre, where I take care of 0-3 year-old children. I still feel very tired and can only manage my job and my husband does most of the housework. I have just had pneumonia, which is the first complication to PRP I have had and every day I am in an environment with a lot of bacteria.

I am supposed to get my fifth Remicade treatment on 25 November, but I think I will stop now that I know it is NOT going to cure me and I am afraid to get more complications caused by a low immune system.

Looking back I still think I made the right choice and I do believe it helped me through the acute phase. I am now so well that I can cope with PRP all though I am far from cured. I am just worried that my luck will change and I think it is wise to stop now. There are many possible side-effects, but no one can tell who will experience them, and that is what makes this such a tough decision. I cannot be sure that Remicade really helped me; I just feel it did for a while.

Barbara (United States) – Nutrition is important

… Neither my dermatologist or internist became aware of this until after I lost thirty pounds – and was so weak and sick I could hardly get out of bed …. I absolutely could not swallow food and my family was so scared and unknowing of what to do for me.

This website is a blessing.


I am very much a new comer also …. I find that I really need the support and also the information about the healing process. This disease is so unpredictable with no specific course that I find it very helpful to read about our brothers and sisters journeys. I need hope at this point. We’re just overwhelmed by the diagnosis and the lack of knowledgeable health care providers.

Thank you all for being there.