Hi my name is Kami and I am a Weggie! :)

[Kami]

My story is pretty much the same as everyone’s. I think I have had Wegener’s for a very long time before running into enough trouble to finally get diagnosed. My doctor doesn’t think that you can have Wegener’s for that long and live but I have had different issues since 1999 that now all seem to be related to Wegener’s. My symptoms were sinusitis, pink eye, leg/foot pain and numbness, lung involvement, kidney involvement and myocarditis. I ended up in the hospital once I started bleeding in my lungs and was diagnosed after a bronchosopy and kidney biopsy. I was started on IV prednisone, Cytoxan, and I had 7 plasmaphresis treatments. My platelet’s dropped to under 30 and I had to have transfusions of platelet’s and RBC. I also had blot clots forming in my legs and my main vena cava so I had to have an IVC filter implanted (which now can never be removed). I don’t understand how a person can not have any platelets and get blood clots ?? I have to stay on Warafin the rest of my life now because of that filter. I was started on 15 mg a week of Methotrexate and pentamidine and slowly tapered off of the prednisone. I was down to seeing my Rheumy every 3 months with blood tests done every 8 weeks. February 4th of 2011 I had my first ESR test that came back normal otherwise I was hovering around 30 which wasn’t too bad. March 22 my ESR came back at 53 and my ANCA went to 80 after being normal for a year. I don’t understand what causes this to happen?? I have done nothing different. Anyway, they increased my Methotrexate to 20 MG put me on 20mg of Prednisone again (hoping for 3 months this time, one month at 20, 10, 5mg) and started the process for insurance approval for the Rituxan. I was just approved yesterday and I start my course of treatment on May 4th. I am doing 4 infusions one week apart. I am told that Rituxan should keep it in remission better than the Methotrexate so I am hopeful.

The reason that I think that I have had this since at least 1999 is that I was diagnosed with pernicious anemia and Reynaud’s syndrome in 1999 and 2000. I have had fatigue, ringing in my ears, strange tingling and feelings in my legs and back for years. I am diagnosed with bronchitis, pneumonia or pleurisy EVERY single October or November. In 1999 I ended up in Urgent care with Pleurisy and they said that I had some strange infiltrates show up on my lung x-rays. They didn’t know what it was but it wasn’t cancer so don’t worry about it probably just scar tissue or something. Now I don’t think that I had pleurisy at all.

My Rheumy assures me that I am a normal healthy person I just have this disorder that we have to monitor and treat and that he is going to help me as normal of life as possible. I doctor at the University of Minnesota and I have the best of the best in each of these specialties that work with my rheumy: liver, lung, the director of the bleeding and clotting disorder clinic, and urology. I feel very fortunate to have all of this 1-1/2 hours from my house.

Me personally? I was diagnosed when I was 43. I have one daughter that will be starting college this fall. I live in rural Minnesota and I love the country. I enjoy my life and I am doing ok It just gets kind of tiring dealing with it at times.

I have enjoyed and appreciate being able to read everyone’s posts and must say they have helped me get through the diagnoses of this scary and unknown disorder. Thank you everyone for being my Weggie friend!! God bless you all!! Kami

[Red]

I too live in Minnesota just diagnosed nov 2010 still in treatment cytoxin 6th treatment in 2 weeks or so yes this site has been wonderfull for me. i am in city St.Paul area

[Kami]

My mom lives in Roseville, know St Paul well. I am in Pine City. Nice to meet you!

[Red]

Nice to meet you too, yes i know st paul lived in MN my entire life , i am 43 years old love the country have cabin near Hinkley,mn thats near pine city.

[ArlaMo]

Hi Kami! Nice to meet you, although we all wish it were for other reasons, I'm sure.:rolleyes1: We lived in the Maple Plain area, right on Independence Lake in 2007-2008. Absolutely loved it there, but moved to WA to be closer to my family. Good thing - they've been a huge help since I was diagnosed last year.

[Jack]

Welcome to the Forum. :smile1:
Blood clots are very common with Weggies and so you may well have ended up taking Warfarin for life even without the filter. Many of us are.
It sounds like you are making good progress and I hope you continue to improve. Drug free remission should be everyone's target.

[Sangye]

Hi Kami, nice to meet you. I think you're right about having had Wegs all that time. The description of your chest x-ray in 1999 sounds exactly like Wegs. I'm glad you'll be starting rtx soon and I hope it works well for you.

Regarding the clots, I got tons of leg and lung clots while on 1,000mg IV pred and while my lungs were hemorrhaging. That should be impossible. But Wegs is an unusual thing. I would think that if you had clots travel to your vena cava that you'd have to be on warfarin for life, regardless of the filter. The history of Wegs plus clots that have traveled makes you more likely to have repeat clots. I don't have a filter and have to be on coumadin for life, also. I've gotten used to it.

[Chris G]

Welcome Kami! I was diagnosed last November (also, at the age of 43). And I too believe that wegs has been living in my body for years! I have had chronic sinus problems since about 1996, and slowly, one at a time, other symptoms crept up.....until 2007 when they all appeared at the same time for a few months........eyes, ears, throat, sinuses. After that, all went quiet for 2 years, and then they all resurfaced during the summer & fall of last year.

It sounds like you're receiving good care, and I hope the Rituxan kicks butt quickly! I should be starting it in a couple of weeks as well.

[Chris G]

Nice to meet you too, yes i know st paul lived in MN my entire life , i am 43 years old love the country have cabin near Hinkley,mn thats near pine city.

Red - OMG your dog is SOOO cute! :tongue1: I may have to post a picture of mine too! Same coloring.....black & tan, except mine is a dachshund. Your dog would probably eat him for dinner.

[Tim Roberts]

Welcome Kami and I am glad you found the group. I am fairly new to the group as I was diagnosed in August of 2009 and I have learned that all of our stories and histories are different but good to hear that the doctors seem to have your situation under control and figured out. FYI, I live in St. Cloud, Minnesota. Seems to be many of us Minnesotans with wegener's which seems a little odd I guess. Best of luck to you and please feel free to use the experience of this group as they have helped me greatly.

[NicShaf]

[QUOTE=Kami;38737]My Rheumy assures me that I am a normal healthy person I just have this disorder that we have to monitor and treat and that he is going to help me as normal of life as possible..


Welcome Kami! I'm glad you have found this forum, it will prove to be invaluble in your treatment and recovery process.
I love what you said above about your Rheumy assuring you that you're healthy, this is just something to monitor. That is such a great attitude to have. It sounds like you are doing well with everything, I love to see possitive thoughts being thrown around:).

Best of luck with the RTX, I hope it works for you.

[vdub]

I was diagnosed with pernicious anemia and Reynaud’s
Very interesting.... My Dad has a bad case Reynaud's and I have a very mild case. But, like you, I have pernicious anemia. I inject B-12 twice a month and will have to do that for the rest of my life. Mine is caused by a loss of intrinsic factor, which at one time I had tied back to my hypothalmus (I believe). The B-12 issue is one thing that I have had trouble going back to the root cause on. In addition to the B-12, I take desmopressin -- it's the most expensive drug I take.

Also, like you, I believe I have had WG for years and not known it. I'm guessing that I have had leg issues (the tingling you mention) for maybe 15 years or so -- maybe longer. I still have the issue, so maybe it is something else. However, my WG isn't in remission yet as far as I know. Anyway, I'm still taking a lot of mtx, so I'm guessing I'm not in remission. I certainly don't feel like. Aches and pains every morning until I get drugged up.

Hope the rtx helps.

[Kami]

Thank you everyone for the wonderful welcome, it is nice to meet you all. It's kind of like I have been watching this movie or reality show for a year and now all the characters are talking TO me! :)