Worst things about having Wegener's granulomatosis

[Daggar]

She highly recommends you wean off Imuran before attempting to have a child, however, in some cases the patient has no choice if their disease is still threatening and they want to have a child. The doctors and family in question will sit down and weigh the risks in both cases. Some of her patients have given birth to healthy babies while continuing with low-dose Imuran (no breast-feeding) and close monitoring throughout the pregnancy. To her Rituximab is an "unknown" risk -- there isn't enough data over the long term that makes her feel comfortable with that option.

[Sangye]

Dr Seo also uses rtx conservatively for the same reason. He still prefers to use ctx since the side effects and risks are so well-known.

[Chris G]

Couple more to add to the list:

- I go to work with puffy, swollen, red eyes, stuffy nose, sinus pressure, feeling like crap. Someone asks "oh do you have a cold?", I reply "no, not exactly".....not wanting to get into a discussion. But they won't drop it......."allergies?" - Ugh....I say "yeah, something like that". Then they launch into a diatribe about how horrible their allergies have been lately, blah, blah, blah!!! Really!?! Please shut up. My WG trumps your worst allergy day. But on the outisde I say "yeah, I know what you mean".

- My kids have been sick for the last week........hands are so dry from washing my hands so many times, that I have tiny cuts on the tips of my thumbs. Ouch.

[elephant]

Chris G, I remember those days going to work feeling exactly would you said...I would see my primary doctor and ENT weekly. I finally could not take it anymore and told another doctor please look at my sinus biopsy report, which named about 20 possible diagnosis. He figured it out and gave me 40 mg of prednisone which helped....then I went off to the Rhuemy.

[freakyschizogirl]

I used to sneeze alot cos of the crusting. Colleagues would ask if i had allergies, i said no, Do i have a cold, again i'd say no its just my nose. Then everytime i sneezed it really bothered me when people say god bless you, since i am neither christian or catholic nor any religion really. And the looks i would get, especially since i am not blessed with being a silent sneezer, believe me if i sneezed everyone knew about it!

[pberggren1]

I have sneezing fits now and then and are quite loud as well.

[marta]

I've got another one.

Having your well-intentioned alternative medicine practitioner friends get offended when you don't take their advice and drop all of the meds you're on to try an alternative therapy... naturopath, alopath, osteophath, chiro, etc. etc.

I too am a loud sneezer.... I love it. It sure gets everyone's attention. "Gotcha"

[pberggren1]

I hear ya Marta. I have had so many people tell me you have to go see this herbalist or naturopath and go off all my med immediately.

[Sangye]

LOL At least you guys aren't a holistic practitioner having to deal with your professional peers telling you to dump your meds.

[drz]

LOL At least you guys aren't a holistic practitioner having to deal with your professional peers telling you to dump your meds.

So how do people who belong to a faith based healing group handle the pressure. Do people still die from refusing modern medical treatment for religious reasons? Peer pressure, especially from family would be very hard to resist.