New Weggie...!!!

[Adrina]

Hello all, & Welcome Dirty Don*

I must say, I am the same as RudiK, i don't post, but i do read and may reply to some of the chats. i was diagnosed Feb.2010, but was hospitalized Dec. 2009 for 2 weeks with the docs saying a had a severe case of pneumonia and received 2 blood transfusions, but none of the doctors seem to be able to diagnosed me with all of the x-rays, biopsies, bronchoscopy, and many other procedures i can't remember in the states, but it was until i returned back to Saudi Arabia is when the doctors diagnosed me. i may have also had wegs for a while and didn't know it. i am in remission now after being on cyclophosphamide, pred, biotics, calcium for 6 months, and now primarily on folic acid and 20mg of mtx. This is an AWESOME forum to chat.

[Widthofacircle]

Hi Don and Denis
Welcome to the forum
Brendan

[Dirty Don]

TY Brendan...this circle of friends is so nice! Good to spread the knowledge and understand more...always! Like you, I have faced the 'hypochondriac' label FROM docs too. Mostly GPs who just don't have the knowledge or experience for WG. Not their fault, but it can be misleading and even deathly for those of us with it. It appears that I have had WG for a very long time, but impossible to determine...so we are just dealing with the most recent, very intense flare up. Way it goes I guess...lucky to be here right now! LOL! I'm on pred & methotrexate...not too far into the treatment, so not much to say yet...in another couple of weeks, I go back for first check up on the treatment and some ENT work and pulminary check ups...sheesh...but, Mayo is the best...am very lucky to have them on my side!! Take care!

[Dirty Don]

Hi Adrina, I have had a similar experience in that I may have had WG for a very long time...after pneumonia & supposed Valley Fever...Mayo was able to diagnose WG for me/in me. Not sure if I won or lost there, but am alive, was very ill, near death initially...had 6 transfusions, god knows how many Michael Jackson drugs in me, induced into a coma, and finally one of the docs had sense enough to send my lung biopsy to Mayo cuz they were stumped! Sheesh! I am on pred and methotrexate right now...seems docs think I have a very limited case of WG...mostly in my sinus area now...some tingling in feet, scalp, and other places. Just glad to be on right road and getting a 2nd chance...nice to meet you, best of luck to you!!

[norcalian]

Hi Adrina, I have had a similar experience in that I may have had WG for a very long time...after pneumonia & supposed Valley Fever...Mayo was able to diagnose WG for me/in me. Not sure if I won or lost there, but am alive, was very ill, near death initially...had 6 transfusions, god knows how many Michael Jackson drugs in me, induced into a coma, and finally one of the docs had sense enough to send my lung biopsy to Mayo cuz they were stumped! Sheesh! I am on pred and methotrexate right now...seems docs think I have a very limited case of WG...mostly in my sinus area now...some tingling in feet, scalp, and other places. Just glad to be on right road and getting a 2nd chance...nice to meet you, best of luck to you!!

Hey Dirty Don,

My pulmonologist thought I had Valley Fever before I was diagnosed with WG. I took the anti-fungals for almost ten days until the second Cocci Titter came back negative. At that point they admitted me to the hospital (because I was really sick and they didn't know what was wrong with me) and there another pulmonologist quickly diagnosed me with WG. What made your doctors think you had Valley Fever? Was it lung involvement with Wegs? Glad to hear that you're on the mend. Take care!

[Shannon]

Hi Dirty Don,
I am also new to this forum! After reading your posts I wanted to say hello. I have had WG for almost six years now and it also attacked my sinuses and lungs fairly hard but has spared my kidneys. What you went through is incredible! If you're new to the Prednisone and MTX, I just wanted to say that I went that route too and it got me in remission pretty fast. They took 9 months to wean me off the Prednisone though and I was getting some terrible headaches from it at the end. Once I got down to 10 mg they eased up a lot. I have had no side-effects from the MTX and I've been on and off it for five years. Did they also prescribe Folate? I'm not sure what it is does but it is important to take if you are on MTX. BTW, when they did my lung biopsy they had to send it to Mayo because they were stumped too. Seems like Mayo's the best place to be.

I hope you continue to feel better, and welcome fellow forum newbie.

[Sangye]

Seems like Mayo's the best place to be.

Mayo is an excellent vasculitis center. (Note: Only Mayo-Rochester is a Vasculitis Center). All the major Vasculitis Centers provide equally excellent care. The main ones are Cleveland Clinic, Johns Hopkins, Boston University, Mayo Rochester. Newer ones are forming/ have recently formed in other parts of the country. The Vasculitis Foundation website lists the major centers and consultant doctors.

[Dirty Don]

Hi norcalian, glad to hear they found what you needed to know. That's one of the things WG continues to dumbfound me about...no one really knows what it will do...but good to be treated and helped and supported. Actually, I do have Valley Fever, and my internist knew that, but it's not active in me. Fortunately, other docs took care and notice of some symptoms that were 'abnormal', leaving room for tests on WG...turns out they were right. WG has so many symptoms that are so like other ills and pains...sometimes I can see how the docs can miss it, especially when they hardly ever see a case of WG in their careers! My internist says I'm only the 2nd case he's seen in 21 years of practice! Sheesh! With the exception of contracting pneumonia, my lungs are clearing up normally now. Docs aren't clear on whether the WG is affecting them or the remnants of the pneumonia...most of my symptoms are in my sinuses...and some in my extremities such as losing some feeling in my left foot, resulting in a 'dropped foot' syndrome...can still use it, just feels numb from ankle down to big toe...another sheesh! I AM on the mend, no setbacks with early treatment, and I know, now, that it will be a longer road back to some sense of normalcy...but am glad to have the 2nd chance!! Take care, keep in touch!

[Dirty Don]

Hi Sangye, I'm at Mayo in Phx area. They have a Rheumatology dept that has 3 specialists in WG as of right now. They are knowledgeable, sharing of all their resources, and positive and aggressive in 'taming' the disease at hand. I love them! They are so thorough! I am aware of the others and am just glad and lucky to live near a Mayo institution.

[Dirty Don]

Hi Shannon, if this is a repeat then I apologize, my fingers tend to hit the 'wrong keys' some times! Anyway, HI back to you! Very nice and positive to hear your experience, gives me hope and motivation. I tend to be a 'fast food' patient...in that I want this all fixed.......yesterday!! LOL! But the reality is we have to take our drugs, get in shape, and go with the flow...this disease doesn't give us many choices! In addition to the MTX and Pred, I am on folic whatever...it is for keeping the stomach calm as MTX has caused stomach problems in some people. I feel fine, at worst I've had a few slight headaches which is unusual for me. My doses are fairly low compared to what I've read in other's postings...hard to say what can happen for each of us. It's good to know they have worked for you...docs think I am in early stage or limited WG, so aggressive early treatment should work...that's another thing about Mayo, they are super positive...I firmly believe they think they can resolve most issues!! LOL...good to have on our side!! Take care and keep in touch with your progress/process!