New to the forum

[crackers]

hi brande.it must be a relief to finally get the tests underway.i think splitting them up into 3 more sessions is better for you.i spent a month in hospital having tests done nearly everyday and it can get a little overwhelming.will speak to you soon.good luck and stay healthy.

[Sangye]

That's great, Brande. What a relief to know you're THERE and someone is taking all this seriously.

I'm worried about where Andrew is, too. He's usually on here daily. Andrew! Send up a flare, would ya?

[jola57]

Ditto for me Brande, I'm glad you have a positive attitude and I hear you about the tea. Can't live without it, nothing better than a hot cup of tea for everything that ails you.
I'm worried too, Andrew are you Ok?

[andrew]

I are here!!!!

Very sorry. Work and business have been insane. Kinda calming down now though which is good. Sorry to worry you all, I'll be sure and check regularly next time I'm swept up

I just read through this thread to get up to date. Brande, I can't tell you how pleased I am that you got that appointment at such a great clinic and so quickly. It really brought a smile to my face. Great news! Glad you have such a good doc looking after you as well!

Tell your husband he's free to log in here too if he wants a chat. There are also some support groups available for family members of sufferers but blowed if I can find the link Anyone?

I'm off to catch up on the threads I missed....

[germaine]

Hi Ladybug,
It sounds like you have been having a really hard time. I was diagnosed Nov 6,08 with wegener's and got treatment started that night. I went to 2 GP's who missed it, then emergency one evening, then was referred to an Ear, nose and Throat Specialist, who was familiar with the disease and got an ANCA test which showed I was positive. More being checked, getting rapidly sicker, and then the diagnosis. I started with prednosone 60 mg,that night and got immediate relief for much of the congestion and some of the pain. I have had three bouts of cytoxan, one a month, interveniously, and another scheduled for February. I also am on antibiotics and calcium suppliments, and vitamin D to protect my body. Also a few other things. I have a pill box which has four slots a day, for seven days a week. It sure helps keep things straight. Generally I feel pretty good. The prednosone is down to 20 mg. now. The relief of treatment is hard to describe. Wishing you the best. Keep in touch is you have more questions about this phase of your illness. Germaine

[Carol]

Hello Germaine,
my medication is very similar to yours but why the Vitamin D?? Please email me back and explain it to me. thanks.

[Jack]

Vit D helps the body to absorb Calcium. If you are taking steroids, you need this to ward off Osteoporosis. After around 25 years, my bone density is down to around 50% and I have to be very careful to avoid breaking bones.

[andrew]

Agreed. I take Calcium with Vitamin D very day due to effects of the Pred. Last bone scan showed a little deterioration, not enough to be in a panic about but it was there.

[crackers]

i am on calcium tabs everyday but once a week take a tab called alendronic acid which helps the bones absorb the calcium.
john

[Luce]

I only take alendronic acid once a week - nothing daily and no Vitamin D. It's early days yet so not sure if the pred has done any damage to my bones.

John - isn't alendronic acid a pain in the backside to take? You have to take in the morning with a full glass of water, wait half an hour before eating or drinking anything else and you must remain seated or upright (ie no going back to bed!) until after you have eaten.
Thank goodness it's only once a week - would drive me nuts if I had to do that every day.