Hello from Minnesota

[Gragnoc]

Hi, my name Greg and I am 38 yrs old. I was 23 when diagnosed with Wegeners Granulomatosis on July 23, 1999. I have been only reading threads up until now and I am happy to have found this support site full of great people. I don't know where to begin or what else to say.

[Pete]

Hi Greg,

Welcome to the "club". When you get time, you may want to post your story in the "new members" thread. Mayo Clinic is one of the best centers for treating our disease. Hope you're getting good treatment and feeling well.

[Debbie C]

Hi Greg, glad you decided to join the "family ".You've been dealing with this for some time now so you can probably tell us a thing or two.Sorry to hear you were diagnosed at such a young age. What involvement do you have and meds are you on ?

[Beverly]

Hi Greg
You have dealt with wg for long time. I agree with you that this forum is full of great people, and am glad you decided to become a part of it. I am sure that you have experience that can encourage us and there will be someone here that will offer encouragement to you.
Welcome :biggrin1:

[Alysia]

welcome to the famiy Greg :hug2:
wow, 15 years of being a weggie :thumbup: I guess you can teach us a lot from your experience.
are you in remission ? what meds are you/ were you on ? what are/were your symptoms ?
please share whatever you feel like sharing. we are glad to have you with us.

[mishb]

Hi Greg and welcome.

I'm glad you have finally decided to say hello.
15 years is a great effort. You certainly would have so much to share or participate in this group.

We look forward to hearing more from you now that you are no longer a stranger.

[Gragnoc]

Thank you everyone for the warm welcome.

It all started in the winter of 1999 when I was living in Sioux Falls, SD. My waists started to hurt once in a while and was constantly tired. I thought it was being caused by being on a computer all day. I was working in an Online Technical Support Department for a local computer company and typing a lot was a part of the job. I had to leave the company because I couldn't keep up with the workload. Fortunately, I was able to find a new job at a video store as a manager.

In July, I was on vacation with my family in Tennessee when my knees really started to hurt especially after I got back home. One day at work, my left knee swelled up and it hurt to walk, sit down, and kneel. My mother had to drive down from Marshall, MN to take me to the Emergency Room at Sioux Valley Hospital (renamed Sanford Medical Center). They took some X-rays, wrapped my left knee was wrapped up, given crutches, and some medication (can't remember). They also referred me to a doctor of sport medicine. He referred me immediately referred me to a Rheumatologist, but it was a week before my appointment.

During that week, my best friend was in the process of moving into my apartment. His Fiancee bought us some fast food takeout that Thursday night, but I started vomiting overnight and I thought it was food poisoning. I called my best friend and his fiancee to see if they were also got food poisoning. They felt fine and will check on me the next day thinking it was a stomach flu. Unfortunately, that wasn't the case and went to my Rheumatologist appointment the next day with a bucket. The doctor and his nurse took care of me while they ran the blood tests and examined me. I went home and tried to rest but wasn't getting better. My My father took me back to the ER at Sioux Valley Medical Center again and the doctors immediately admitted me thinking it was sever dehydration.

While in the hospital, I had bad nausea, vomiting every time I ate or drank, bleeding into my sinuses, my knees swelled, and the rest of my joints ached. It became very difficult to do the simplest things. My parents sat at the table in the corner of my hospital while doctors tried to figure out what was wrong with me. They checked for STD's (Negative), Lyme Disease (Negative), drugs (Negative), GI problems (Negative), and then tried a number of other tests. Then the Rheumatologist I saw the other day came to my room once he found out I was in the hospital after missing my follow up appointment. He ordered a chest x-ray which showed nodules and blood in my lungs. He then informed me that I have Wegeners Granulomatosis later that day and answered some other my parents questions. It was weird, my reaction was "Ok" mainly because the other doctors had me on strong pain killers and anti-nausea medication. However, after he left the room to submit some orders, the news sank in that I have a rare condition that was quickly getting worse then I started to cry my eyes out.


The doctor ordered a PICC IV, a bronchoscopy, Prednisone, Cyclophosphamide, Bactrim, and other things. The procedure to put in a PICC IV was not fun and first high dose of Predisone made me very nauseous. That night I started to cough up blood The next morning I had the bronchoscopy and moved to Pulmonary ICU. After the medication started to take effect and the nausea was gone, my parents got me pizza after the doctor gave permission. My doctor eventually released me from the hospital, but had me schedule to visit him at least once a week and blood tests three times a week.
He readjusted my dosage of my medications.


Medications I was put on at the time.
Prednisone - 80mg to 160mg for a very short time
Cyclophosphamide - 150mg to 200mg for a very short time
Bactrim - 1 Pill to 2 Pills
Prilosec - 1 Pill to 2 Pills
Blood Pressure Medication (Don't Remember)
Coumadin - depending on my pro-time tests
Iron Pills - 1 Pill to 2 Pills
Prescription Pain Killer - when needed
Prescription Anti-Nausea - when needed


So far, Wegeners Granulomatosis hit my sinuses, joints, skin, and lungs. After being dischanged from the hospital, my kidneys started to fail and had to start seeing a Nephrologist. He was in the same building as my Rheumatologist and had weekly appointments on the same day. My Kidneys were also filtering out proteins from my blood causing blood clots that traveled to my lungs and caused another trip to the hospital.


It took two months to get everything under control and another few months before the doctors started my tapers.

[Gragnoc]

Thank you Pete for the warm welcome.

The Mayo Clinic is great. I went there about 6 years when I had a really bad flare up. Is was an interesting experience.

I hope you are doing well.

[Gragnoc]

Thank you everyone for the warm welcome. I means a lot to me after not knowing anyone with Wegeners Granulomatosis for a long time.


Hi Greg,

Welcome to the "club". When you get time, you may want to post your story in the "new members" thread. Mayo Clinic is one of the best centers for treating our disease. Hope you're getting good treatment and feeling well.

Pete, The Mayo Clinic is great. I went there about 6 years when I had a really bad flare up. Is was an interesting experience. I hope you are doing well.


Hi Greg, glad you decided to join the "family ".You've been dealing with this for some time now so you can probably tell us a thing or two.Sorry to hear you were diagnosed at such a young age. What involvement do you have and meds are you on ?

Debra, thank you. Being 23 yrs old when I was diagnosed. It was tough and I became very depressed at one point, but I was lucky to have great friends and family who helped me though the dark times.


Hi Greg
You have dealt with wg for long time. I agree with you that this forum is full of great people, and am glad you decided to become a part of it. I am sure that you have experience that can encourage us and there will be someone here that will offer encouragement to you.
Welcome :biggrin1:

Beverly, I will be more than happy to encourage and help anyone with wg.


welcome to the famiy Greg :hug2:
wow, 15 years of being a weggie :thumbup: I guess you can teach us a lot from your experience.
are you in remission ? what meds are you/ were you on ? what are/were your symptoms ?
please share whatever you feel like sharing. we are glad to have you with us.

Alysia, thank you for the hug and the thumbs up :). I am willing to help and encourage anyone with WG. I have come out of remission with Kidney, Sinus, and Joint problems. I am currently on Methotrexate (20mg), Prednisone (10mg), and Folic Acid. I have been on Cyclophosphamide in the past. Me and my doctor are waiting for my test results before we make any changes to my treatment.


Hi Greg and welcome.

I'm glad you have finally decided to say hello.
15 years is a great effort. You certainly would have so much to share or participate in this group.

We look forward to hearing more from you now that you are no longer a stranger.

Thank you mishb for the warm welcome. I will share as much as I can.

[pberggren1]

Welcome to the family Greg. Curious as to which docs you saw at Mayo. Do you still go for follow ups there?

[windchime]

Welcome Greg. You've been through a lot and will hopefully continue to share your experiences with the group. This is a good place to rant, ask questions, and share knowledge. I'm glad you found our little family and sorry you had a reason to, but if you have to have wegs this is the place to be. Great support here.

How are you doing now? Are you still on meds or are you happily in remission?

[Gragnoc]

Welcome to the family Greg. Curious as to which docs you saw at Mayo. Do you still go for follow ups there?

Phil, thank you for the warm welcome. The last time I was at the Mayo Clinic, I saw Dr. Ytterberg. He seemed like a good doctor, but I went to the Mayo Clinic once and haven't gone for follow-ups since then.

[Gragnoc]

Welcome Greg. You've been through a lot and will hopefully continue to share your experiences with the group. This is a good place to rant, ask questions, and share knowledge. I'm glad you found our little family and sorry you had a reason to, but if you have to have wegs this is the place to be. Great support here.

How are you doing now? Are you still on meds or are you happily in remission?

Hi Cindy, thank you for the warm welcome. I am hanging there after my WG came out of remission. Until recently, I was in happily in remission for about 3 to 4 years.
Greg

[Gragnoc]

It look likes, I will be going to the Mayo Clinic after all. My doctor's office called and informed me that the protein levels in my urine has increased since my last urine test in May.

[windchime]

Sorry to hear that, but you will be in good hands there.

[lag713]

I'm late to the party but I thought I should join in welcoming you to the forum! I hope you find us to be a welcoming and warm bunch of weggies. I look forward to hearing more from you in the future. I am 27 (ack... 28 in a few days) and was recently diagnosed. A pulmonary doc asked me if I ever said "Why me?" and I explained that my bigger issue has been "why now?". I wish I could've had my 20s and 30s (even my 40s but now I'm getting greedy) in good health and fewer worries. Like you, I've had good friends and some family support. I don't know what I would do if it were not for my husband's support though.

You've come such a long way since your diagnosis. I hope your protein levels decrease soon.

[Gragnoc]

I'm late to the party but I thought I should join in welcoming you to the forum! I hope you find us to be a welcoming and warm bunch of weggies. I look forward to hearing more from you in the future. I am 27 (ack... 28 in a few days) and was recently diagnosed. A pulmonary doc asked me if I ever said "Why me?" and I explained that my bigger issue has been "why now?". I wish I could've had my 20s and 30s (even my 40s but now I'm getting greedy) in good health and fewer worries. Like you, I've had good friends and some family support. I don't know what I would do if it were not for my husband's support though.

You've come such a long way since your diagnosis. I hope your protein levels decrease soon.


Lag713,
Thank you for the warm welcome :smile1:. It is never too late to join the party. Everyone on the forum have been awesome :thumbsup:. When I was diagnosed with Wegeners Granulomatosis (23 years old). I found myself asking the same questions as you. Like, "Why me", "What caused this to happened", "Why now", and "What did I do to deserve this"? With help from my friends and my family, I was able to beat my wegeners granulomatosis over time. However, I do find myself asking other questions that pertain to my kidneys and my appointment at the Mayo Clinic. Then I tell me myself, "I will make it through this, I will not back down, I will triumph and become stronger".

Greg

[lag713]

Stay strong! You know you're in good hands! :thumbsup:

[loisann11]

Hello neighbor, I am from that part of the country too. Currently all my Doctors are in the Twin Cities. I was just Diagnosed for real Easter this year. I did have pneumonia for Christmas while in AZ. Docs there did think I had WGA but was not verified until another flare up at Easter this year. This is all new to me and in reading some of the posts here make me think I should have been more worried about it than I have been. But for me just another day in the life.... Now feeling really glad I was only on 60 MG Prednisone as a lot of you seem to have been even higher. I do admit that I have gotten almost all of the side effects from it. I decided to taper just a little faster than the Doc wanted but I did keep him informed as I did it. I am now down to just 5mg and feeling much better. Nice to know that long term looks good. I had 5 rounds of plasma exchange and then 4 doses of Rituximab via IV. Feeling better all the time. Good luck to you!!