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View Full Version : How many years have you lived with Wegners?



maria garcia
04-25-2011, 02:57 PM
How many years have you lived with Wegners and did they start you on medication right away?

pberggren1
04-25-2011, 04:12 PM
I have had it since late February of 2003 and was diagnosed in late April of the same year and started meds right away.

mishb
04-25-2011, 04:40 PM
I have had symptoms since 2009. Diagnosed Sept 2010, nasal biopsy confirmation Feb 2011, started meds April 2011. Better late than never :unsure:

Michelle

manalolana
04-25-2011, 05:00 PM
Officially diagnosed in April 2010 at the Mayo clinic with biopsy slides that I brought up from a year ago. Once confirmed, they started me out on MTX right away.

delorisdoe
04-25-2011, 08:22 PM
First big flare 1999, diagnosis 2001. 10 years.

Jack
04-25-2011, 09:24 PM
26 years.
Medication started on day one of diagnosis.

Elena
04-25-2011, 09:51 PM
Symptoms from late January 2009, diagnosed late April 2009. Started meds right away. So almost accurately 2 years.

ArlaMo
04-25-2011, 10:51 PM
Symptoms started in Oct of 2009, diagnosed in April of 2010 and started on meds right away.

JanW
04-25-2011, 10:55 PM
Symptoms started in 2005, misdiagnosed for five years, loss of mobility due to severe bilateral foot pain led to diagnosis in January 2010. Started on medication after surgery for subglottic stenosis in March 2010. Medicated Remission since early fall 2010, currently trying to reduce meds in hopes of going med free.

I should add that I was not sick from 2005, although increasingly out of breath (subglottic stenosis). Suffered saddle nose in summer 2009 (probably flare).

renidrag
04-25-2011, 11:49 PM
I had symptoms for two years before August 09 diagnosis. Started medication same day. Drug free remission June 2010. I am on Warfarin for clotting with a filter in vena cava. Had an embolism in December 09.

NicShaf
04-26-2011, 12:45 AM
I think Wegs started in September 2010, diagnosed in December 2010. Started Meds about a week after diagnosis.

nagesh
04-26-2011, 02:33 AM
My son diagnosed in jan 09,at the age of 14 years i think he had symptoms preior to april 07 it self,
anca + and kidny biopsy confirmed WG,
after 6 months of cyc + pred treatment anca came negative . continued to treat with azoran +pred
till now. recently Dr wrote on his records WG in remission

Chris G
04-26-2011, 02:37 AM
recently dr wrote on his records wg in remission

AWESOME!!!:biggrin1:

ScreaminMeanie
04-26-2011, 04:10 AM
Originally dx'ed in April 1991, after symptoms since January 1991. Started on CTX and Medrol immediately on diagnosis. After 8 months developed PCP and was taken off CTX. Tapered off Medrol and in May 1992 was deemed to be in remission even though C-ANCA was still high. Stayed in remission until (I believe) October 2009. My current flare was dx'ed in June 2010, and I was started on pred and Bactrim immediately, then on MTX in July when insurance company denied RTX treatment.

gwenllian111
04-26-2011, 05:13 AM
I was diagnosed in 1995, and my treatment was delayed somewhat as the medics could not believe that WG would affect a child! So it was a race against time in ITU with the WG, and the immuno suppresants working. I was given the 'lords prayer' at one point, because it was thought that there was no more that could be done - aaargh, i'm rambling again, sorry!!!

Meredith
04-26-2011, 05:56 AM
Have had it since approx. 2004

pberggren1
04-26-2011, 06:34 AM
I was diagnosed in 1995, and my treatment was delayed somewhat as the medics could not believe that WG would affect a child! So it was a race against time in ITU with the WG, and the immuno suppresants working. I was given the 'lords prayer' at one point, because it was thought that there was no more that could be done - aaargh, i'm rambling again, sorry!!!

Ramble as much as you like. I enjoy your posts.

Sangye
04-26-2011, 08:31 AM
I was dx'ed a year after my first symptoms. I started treatment that day-- June, 2006.

Kathie28
04-26-2011, 11:38 AM
My first symptoms were in May 2010 and I was diagnosed in January 2011 and immediately started treatment.

jeriorleans
04-26-2011, 12:49 PM
My son was also diagnosed at 13, age 14 now. Who does your son treat with?

maria garcia
04-30-2011, 02:43 PM
I have had it since late February of 2003 and was diagnosed in late April of the same year and started meds right away.

I just read a blog that you were in the hopital with TB? Are you ok? I hope everything is better.

pberggren1
04-30-2011, 02:55 PM
I just read a blog that you were in the hopital with TB? Are you ok? I hope everything is better.

Thanks Marcia.

That was back in early July when they thought I had TB but it turned out to be something different called Mycobacterium Abscessus Lung Disease. It is related to TB and Leprosy but is much more rare and harder to treat and rarely cured.

I have been on Antibiotics for it ever since and will be for quite some time to come. A couple of times I was not sure I was going to pull through or not. The one antibiotic called Amikacin has taken away all my hearing. It is highly ototoxic meaning that it destroys the auditory nerve in the ear after the cochlea.

I am much better now but also have had a flare of Wegs early this year and had to go back on ctx and high dose pred on March 4.

I had lots of blood in my urine last night and am being refered to a local urololgist to scope my bladder to check things out. My doc is quite concerned.

I still cough up bloody mucus every day from my lungs. It is quite a chore sometimes doing this and gives me a headache.

Hopefully the scope of the bladder is next week and will give us some answers to as why there was blood in my urine.

Energy wise I am good because of the pred. I am down to 45mg a day now and hopefully can continue to decrease by 5mg per week until down to 20 or 10mg.

bri
05-01-2011, 10:40 PM
Diagnosed in Oct 2004 in renal failure, had it for years undiagnosed, sinus surgery etc... Kidney transplant 2009, feel better than ever since

Kami
05-02-2011, 11:52 AM
I think I have had it for many many years. November of 2009 things got really bad and was diagnosed in December. Started on IV Prednisone and Cytxn immediately.

malin
05-03-2011, 06:21 AM
I've had Wegs for almost 8 years now, was first diagnosed about a month before my 16th birthday, will be 23 in july. My symptoms started in early/mid july and I was diagnosed and starting treatment with MTX n pred in late August / early September, actually I can't actually remember cus a almost all my memories from late July up until late October/November are sort of gone. Think being so weak, ill and in shock caused some sort of memory loss / black out. Has anyone else experienced this?

bri
05-03-2011, 07:32 AM
I did have a great deal of memory loss, I think mostly from the Cytoxin, but also probably because of age.. Never had any blackouts, is your blood pressure ok? I would keep track of it to see where it is at if you are blacking out...

malin
05-03-2011, 05:12 PM
I don't have any black outs anymore so thats ok :wink1: Although doctors didn't really know why I had them before, could be, as you said down to blood pressure or maybe just shock and being so weak initially. I don't really know :/

elephant
05-03-2011, 09:41 PM
I use to have black outs before I was diagnosed in 2008. Multiple doctors could not figure it out. I even spent a couple nights at the hospital on a cardiac unit. I had multiple cardiac test done too to rule out any abnormalities.

maria garcia
05-04-2011, 01:21 AM
Thanks Marcia.

That was back in early July when they thought I had TB but it turned out to be something different called Mycobacterium Abscessus Lung Disease. It is related to TB and Leprosy but is much more rare and harder to treat and rarely cured.
.
I have been on Antibiotics for it ever since and will be for quite some time to come. A couple of times I was not sure I was going to pull through or not. The one antibiotic called Amikacin has taken away all my hearing. It is highly ototoxic meaning that it destroys the auditory nerve in the ear after the cochlea.

I am much better now but also have had a flare of Wegs early this year and had to go back on ctx and high dose pred on March 4.

I had lots of blood in my urine last night and am being refered to a local urololgist to scope my bladder to check things out. My doc is quite concerned.

I still cough up bloody mucus every day from my lungs. It is quite a chore sometimes doing this and gives me a headache.

Hopefully the scope of the bladder is next week and will give us some answers to as why there was blood in my urine.

Energy wise I am good because of the pred. I am down to 45mg a day now and hopefully can continue to decrease by 5mg per week until down to 20 or 10mg.

Im so sorry you went and are still going through such a horrible ordeal. I can tell you you have been very helpful in this forum. Especially people like me that are so new at this. Stay strong! And thank you for sharing your story with me.

pberggren1
05-04-2011, 05:23 AM
You are very welcome Maria. Keep us posted as to how your daughter is doing.