Hello

[sharon]

Hello everyone,
i have been dignosed with wegeners for 3 years now, it is so nice to know that i am not the only one going through this very stange and at times lonely disease. I have been nervous about the whole internet thing, but it is time i bit the bullet. Here goes, my story is very similiar to that of others, i had stange lessions and rashes all over body, pain in all my joints, i could hardly lift a cup up, and nosebleeds coupled with asthma & sinus all of which would not respond to treament of course, for over 6mths. I went to my GP very sick and in a lot of pain once again, he sent me for x-rays and thats when it all started, i was put into hospital that afternoon with suspected advanced lung cancer, only to find out approx 10days later that Wegners was the diagnosis, my life has not been the same since, i have new normal now, still trying to learn the lesson of not overdoing it though, yes, i am a bit stubborn and frustrated with this whole thing. i get fatigued easy and my lungs are still not clear.
But at least now I know i am not going crazy slowly with all the strange symptoms, that my drs have never heard off. One more thing, i was wondering did anyone else get a reaction to the new flu vax?
thanks

[elephant]

Welcome Sharon, yea I hear you on the new normal, I take it one day at a time and see how I feel and then figure out what I can do that day ( exercise or just stay in and rest). I took both the flu shot and H1N1 and no reactions.

[Sangye]

Hi Sharon, nice to meet you! Lisa (Coffeelover) is going to love your avatar.

How scary to be told you had advanced lung cancer! I was told several possibilities, but it was clear it wasn't cancer at least.

I don't get vaccines. I had tons in my early 20's (in addition to childhood) and feel that was a trigger for the Wegs, in combination with other toxic exposure. One new member (I'm forgetting the name-- maybe Nancy?) posted yesterday that her 12 yr limited Wegs turned into kidney involvement after the H1N1 shot. What was your vaccine reaction?

[Col 23]

Hi Sharon
Glad you found this group.
I was told I had stage 4 breast cancer before diagnose Xmas 2009. So understand what you have been through there and a lot of the group here have similiar stories. Misdiagnose is a real and life threatening issue with Wegs. I also thought I was going crazy going back to the docs every week.
Im not having any vacinations until I get into remission.
I have never had any success with the pnuemonia vacs as I always got pnuemonia and I dont trust the flu vacs. But just my opion. I know we cant have he live ones. This was confirmed by another member of the group. What meds are you on after 3 years.
Col 23

[Sangye]

When I asked my first doc how many people have Wegs, he said they don't really know because many are diagnosed at autopsy-- either they had Wegs for years and didn't know it, or they had sudden and severe onset and died before it was dx'ed.

[sharon]

Hi Sangye,
thanks for your reply, the most scary thing about the lung cancerscare was that just 2-3 yrs before my diagnosis, we nursed my husbands father until he died of lung and brain cancer, i had 3 young children, so wegners was a relief, a lesser of two evils so to speak.
On the subject of the flu vax, i had the needle in the morning, was fine most of the day, tired, but that's normal, it was late in the afternoon, starting getting aching pain accros the back of my chest, continued cooking tea, within an hour, i had a lot pain that wrapped right around my chest, felt like i was being constricted, weird i now, what i imagine wearing a v tight corset would feel like. Had no temp though, i took some ds symbicort & Brufen, my thinking it must have triggered some inflamatory response, we are lucky enough to have one of those spa's in a bath, ran a hot one and tthe jets onto my back. It gave some relief. I rang my friend who is a nurse, kept her updated, and just rode it out. I also increased my pred. for a bit. The pain was pretty much gone by the next day, but it left my chest pretty tight and very tired. I ended spending the next few days in bed. That was almost 2 wks ago, chest still a bit more tight than usual, but otherwise ok, energy seems to be back to my normal levels. Sometimes a turtle others a sloth. Coffee and choc are best friends at the moment.
Keep smiling

[sharon]

Hi Col 23,
With the vaccinations, this is the first time i had a bad reaction, but i would rather the reaction than swine flu. I have a few friends that are nurses and one a pathologist, they have looked after people that have had severe complications, life support etc. I still have lessions through both my lungs, the advice i got from my specialist was that the flu, especialy swine flu would be quite bad for me & high risk. So i followed their advice.
My meds at the moment are
5mg pred,
1.25gm bd cellcept
ds symbicort
calcium
& chocolate, i discovered pineapple centered freddo frogs, they call my name all the time.
In regards to remission, have your docs given you a time frame when they think you might get there? I have still not got there, initially they told me 6-9 mths, then 2yrs, but when i get there, i am having a party let me tell you.
have a great day, keep smiling

[elephant]

Sharon, I love your attitude. Chocolate is so good. Dark chocolate is an antioxidant....so having some everyday is good.

[julia]

nothing to add at the moment just want to see if I added the avitar correctly.

[DEE]

Elephant i feel the need for one of those TRIPLE CHOCOCLATE MUFFINS DAYS again hubby shopping tomorrow DEE