Those who have lost their lives to WG

[gwenllian111]

Richard - i'm on 1000 mg per day of cellcept so far - working my way up to 3000mg slowly. I had a scan last week which showed arthritis in my hands, shoulders, hips, knees and feet - no wonder I can't get out of bed some days. I'm on 60mg pred, and having 3 IV pred infusions next week at the hospital. I look so big, put on 2 stone, but as my husband craig keeps telling me, that's the least of my problems. :-/ I know he's right, but I hate the side effects of pred which seems rediculous considering I know.

Stephanie - I didn't know that WG increasd the chances of stroke. Interesting. John has been through so much. God bless and keep fighting XX

[gwenllian111]

I've been in the ER more times than I remember--especially in the first 2 yrs after dx. One time I was in for a new problem that was unrelated to Wegs. The friend with me had taken me to many ER trips already and knew the long list of diagnoses I already had. At one point I looked at her and laughed, saying, "After all I've been through, wouldn't it be funny to die from something that wasn't even on the list?"

LOL i always think that with me too!!

[DEE]

did they say what type of arthritis it was .I have the same symptoms and the are saying Osterio Arthritis.

[gwenllian111]

Gwen,

I hope the cellcept will work for you. Given your intolerance of immuno suppressants, has the doctor had any ideas on some of the newer investigative treatments? If the standard stuff isn't working I'd say it'd be worth it to try something like that, of course I'm no doctor too. At any rate I'll keep you in my prayers.

Thanks Bob. Plasma exchange I think, if it affects my major organs.

[gwenllian111]

did they say what type of arthritis it was .I have the same symptoms and the are saying Osterio Arthritis.

I did ask this last week at my appointment. The rheumy said sinovitis which is another word for arthritis he said - but no specific type.

I've got great new gloves from the chemist now for my hands to stop them turning into a claw which I can't open. I'm really pleased with them, has helped a lot.

Dee - do you have any 'aids' to help you around the house etc? What pain relief are you taking?X

[DEE]

Gwen,
I use a walking stick ,mostly outdoors. But because we I live in a bungalow moving around not to much of a problem . Just had to use the down stairs bedroom ,as climbing upstairs Im reasonably ok but coming down is to painful on my knees .
I take 100mg Tramodal in a morning and evening .Try to manage without through the day but GP said its ok if need be .