To everyone **PLEASE READ**

[Doug]

Odd things are happening on this site tonight: the quote was in the reply box, and the reply box was open when I came to this site. Somehow, my response was duplicated- ignore this reply!!

[andrew]

Odd things are happening on this site tonight: the quote was in the reply box, and the reply box was open when I came to this site. Somehow, my response was duplicated- ignore this reply!!

It's the Dougflicker virus

[Mario]

Hello Everyone my name is Mario and I my mother has been diagnosed with WG I have been taking care of here for the last few months and have some concern she is 68 diabetic, with high blood pressure and on dialises. I am at the hospital now with her we will be going home tommorow. She had a very wiered episode where her swolen blood cells where not getting to her brain she was unabel to talk and was completly wacked out. I am not sure what the Doc is going to give her as far as medication just yet but i am looking foward to talking to everyone and learning more about WG thanks o We are from the central valley in California the Freesno Area.

[andrew]

Hi Mario...
Which hospital is your mother in? Not sure about the swollen blood cells, sounds stange. Never heard of that before. I hope the docs get her on a solid drug regime soon. The usual 'starter' drugs are Cyclophosphamide (Cytoxan) which is a fairly hard-hitting chemotherapy drug. It helps 'keep a lid' on the overactive immune system that is part and parcel of Wegener's. The second drug is usually Prednisone. This is a steroid that assists with reduction of inflammation that is also part and parcel of Wegener's. Other drugs for blood pressure etc will probably be prescribed as well. These can vary from person to person. Hope that helps a bit.

[Sangye]

Hi Mario,
I'm sorry your mom now has Wegs on top of her other conditions. What areas are affected by the Wegs and when was it diagnosed?

I'm concerned that you're still uncertain about what drugs your mom is going to be on. Once it's diagnosed, that's usually the first discussion. Wegs treatment isn't simple or straightforward.

Most of us will ask if you have a Wegs specialist involved. Not just a rheumatologist or a nephrologist, and not just someone who's treated Wegs before. A Wegs specialist means they've treated A LOT of Weggies-- maybe that's all they do all day. Given her age and such difficult complications, I suggest you find one immediately and get her there or get her docs to consult with them regularly.

Please don't wait until she's discharged. You've got to hit the ground running on this one. We recently lost an elderly woman in this group-- newly diagnosed, but had been in excellent health pre-diagnosis. She was not treated by Wegs specialists and her doctors' poor choices were evident.

Do you know about the consultant docs through the VF? We can help you get your mom to excellent care. Just ask if you need help with it, or anything else.

[Roberta]

Andrew, yes I have been on 80mg daily with the prednisone and cytoxan 150mg daily since Dec. 18. My appetite is not monstrous, not alot of weight gain so far, just the moon face and increased irritability by far. The thing that has me concerned if I can afford this illness after my cobra health insurance runs out on April 2. I can not work now. I feel all I do is complain!
My mom is a challenge and is 82 and lives a lone, and my sister is going through chemo for lung cancer and I am very close to her. She is only 53, never smoked a day and had surgery in Dec 2010, removed her left lower lung for this. So my problems are not as bad! My stools are not always black, it just seems so after I take the cytoxan. I did mention it to the neprhologist and I am on Prilosec, just increased to twice a day. I was wondering if the Ambien 10m (for sleep) is adding to the shakes and dizziness???

Roberta

[elephant]

Ambien can make you sleepy in the morning, with all the other medicines that you take it is hard to make that call...which pill is causing which side effect. Did the dizziness and shakes start after the Ambiem?

[Sangye]

I think it's pretty scary that you've been on 80mg pred for 1.5 months. That's way too long at such a high dose. I'm afraid you might have upper GI bleeding as a result. It often shows up as only dark (old blood) stools on and off. You need to get into a doctor tomorrow to test for occult blood. A PCP can order the test. Upper GI bleeding can be deadly because you're losing blood silently. I'm not sure that prilosec is enough to protect the stomach from such a prolonged use of 80mg pred.

As far as insurance, since you can't work you should apply for disability immediately. Someone started a thread recently and I posted what I've learned.

[andrew]

Hi Shannon...
Have a read through some of the topics here. They should make things clearer.
Wegener's Granulomatosis Disease Support Forum - FAQ: Board FAQ

As well as what Doug said, each time someone replies to a thread, you'll probably get an email. This is a notification email only to let you know there has been a reply or a new thread. Come back here and view/reply by clicking the link in the email or coming straight to the site via your browser.

You can also email me if you have questions or are having issues with the site

[coffeelover]

welcome Shannon,

The best advice I got from someone on this site was to be accepting of my "new normal". Once I realized that was the way it was going to be, I have felt much more on the positive side. Being positive helps in how you feel overall. Please use us as a sounding board and then hopefully you will feel better. We have all been where you are ( me not that long ago) so we all know exactly what you are feeling.
The other thing I noticed is I seem to get stuff done, but at a much slower pace. This isn't all that bad I decided, but at first it was devastating to me as I prided myself in how efficient I was. Now I move through my life at a slower, more relaxed pace and really that is just fine. (I try to find the positive in what I can)
Just remember we are with you all the way
Lisa