About

James’ Story

Medications James is taking-

 Methotrexate-  toxic drug that acts as a folic acid antagonist to interfere with cellular reproduction and is used in the treatment of psoriasis, certain cancers, and certain inflammatory diseases, such as rheumatoid arthritis.

Prednisolone- A synthetic steroid, C21H28O5, similar to hydrocortisone and used in various compounds as an anti-inflammatory, immunosuppressive, and antiallergic drug.

Calcitriol- a vitamin D compound, a preparation of this compound, used in the treatment of osteoporosis and bone fractureIn

 Early 2004 my son James awoke with strange bright red dots from his right shoulder to his right thumb, they were not raised, just dots that when you applied pressure they would disappear for a second and then return. After going to our local GP we were referred to a dermatologist whom did  and even a biopsy and still had no explanation as to what James had, after many Dr appointments with no results we just went on with living another year until the dots disappeared and James skin was hardening like wax and turned from the red dots to a white/yellow stream from shoulder to thumb. As soon as the dermatologist saw this we were transferred to see a rheumatologist who then diagnosed James with Scleroderma (linear and morphea). By this time there was a patch on his back, neck, chest and the upper arm and hand of his left side. Hearing about the disease and doing some research on the internet gave me such a fright, I can’t even begin to explain what starts to goes through a mothers head. It was one of the worst days of my life, not being in control of a terrible situation. Not being able to do anything to take this away from my son. The next week James was put into hospital for treatment, 3 days a month for 5 months he would go into hospital for high doses of prednisolone and was put onto weekly methotrexate injections (at first he was put onto a oral dose but he refused to take it as it made him feel sick), also between hospital visits he was on high daily doses of prednisolone and calcitriol to help soften the skin. Over the next year he was weened off the prednisolone (Continuing with the methotrexate and calcitriol). He had MRI scans and a bone scan. He had lost a large percentage of his muscle from his shoulder, upper arm, lower arm and thumb, the skin has tightened so much around his thumb that it has limited movement, he sees an O.T (Occupational Therapist) to help with movement and he wears a splint at night. At the last visit to the rheumatologist it seems that his right hand isn’t as big as the left hand, he is going for another MRI in May to see what is going on under the hardened skin.

With James being on the methotrexate it had suppressed his immune system, he often gets gastro and sometime chest infections and tonsillitis. He also cannot be immunised for measles/mumps/rubella. As James has just turned 5 he is starting school soon so I hope that the school keeps in touch with me to let me know if any of the children in his class have any of these infections as it can be harmful to James.

I would love to hear from any other parents who have children with scleroderma.