Up date from Angie

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Thanks for the replies to my posting. I've always had a dread about loosing

mobility in my hands and arms. With the garden and house repairs looming I

expect you can imagine how I'm feeling. Where are my brothers? Off playing

golf etc. I'm past anger at them both. Guess I already knew that the nerve

damage would either repair itself or remain with me. My right leg is numb with

tingles and I have to make sure it's actually moving when I walk. Rather good

at damage limitation when it fails me. Left leg has pins and needles with numb

patches. I've been like this for so many years. Anyway, picking myself up,

dusting down, and wondering if I can use a hedge trimmer.

Hi Betty, glad you made it onto the forum.

Sue, I'm very sorry to hear about your Mother.

Update on my son. As you know he's on Remicade (Infliximab to us in the UK).

It's been fantastic and his mobility is very much improved. However, three to

four weeks after the infusion it starts wearing off. Pain and stiffness builds

up. He literally curls up posture wise before my eyes. He's on max dose for his

weight ratio. It hasn't been without it's draw backs. He's had a few scares.

Went into renal failure and was taken off self injected Methotrexate which

solved the problem. Not before he was absent from Uni for so long he had to

retake a year. He's dyslexic too so time away from studies is not a good idea.

Then it was suspected heart problems - checked out, and his heart is perfect, so

it was put down to AS. He can no longer carry more than 3lbs for any length of

time without chest pains starting up. Last year he was taken off the Remicade

as they suspected he might be having an allergic reaction. After tests it was

confirmed as Psoriasis. Put back on the

Remicade, and underwent light treatment.

In the past few months he's had further biopsies taken, (not nice), and the dx

of Ulcerative Colitis has been upgraded to Crones. We already knew, so it

wasn't a shock. He's cancer clear. Had a bone density scan with the expected

results of thinning bone. Been nagged about his iron levels which are always

low, but at least they have stopped sending him to the hospital for blood

transfusions.

Socially, he does a great line in being refused admission to clubs, or being

asked to leave. Why? The way he walks. Spine is twisted top (some fusion) and

bottom, hip problems means that he swings both legs out when walking.

Knees/ankles have damage so add to it all. The bouncers will not accept his card

that states he has AS, and they think he's drunk. This lad can't drink due to

the meds. He's driving now which has made life so much easier for him. Within

a week of the car being delivered he'd got himself a part time job at a call

centre. Chronic fatigue continues to be a major difficulty.

Angie