New Weggie...!!!

[Dirty Don]

Hey all, have been reading your posts for a while...Andrew got me in finally. I was diagnosed this August, 2011 with what appears at this point to be a limited version of WG...mostly in my sinuses, some nerve damage (dropped foot), and all the irritating symptoms. If a friend and my wife hadn't seen that I was not doing well in early August, I may not be here today. I contracted pneumonia & possible Valley Fever (live near PHX)...after a lung biopsy, scaring my wife & children pretty badly, the hospital I was in sent my tests to Mayo Clinic as they could not be sure of what was going on in my lungs. The Mayo pathologist diagnosed WG. Now Mayo is treating me (prednisone & Methotrexate)...the clinic is the best, I am the luckiest. Has not been fun, am interested in sharing and learning more as this journey progresses...as much as I can. My best to all...am looking forward to meeting some of you in here.

[dennis2512]

hi was dx at the same time this year live in australia. im taking prednisolone and cyclophosmide bactrim nexium foxamax vit d and calcium. when did you notice you felt unwell do you get blocked nose dennis

[mishb]

Hello and welcome to both of you.
This is the best forum around and the people are just fantastic
I am sorry that you have to be here though but if anyone can help answer any questions you have, the vast experience from people on here are the ones to ask.

Take care

[Sangye]

Hi DirtyDon, welcome to the group. I'm glad your Wegs was caught before it went crazy and did more damage. Who do you see at Mayo? I used to see Dr Mazlumzadeh. He was better than my local docs (I lived in Flagstaff then) but isn't a Wegs specialist.

[Dirty Don]

Hi Dennis, sorry to hear your dx too...it's who we are I guess at this time! anyway, I may have had this for as long as 2 years it appears...although the dangerous and debilitating symptoms only came up this summer...blood in nose/lungs, severe fatigue, some sores, and no one at the first hospital knew what I had...so with some delays and a near death experience due to the lungs going berserk on me (they are clearing up now, almost back to normal), I survived the ordeal, ended up with Mayo clinic, and am getting aggressive treatment there. Too early to tell as Methotrexate has a reputation for acting slowly, but efficiently. No side effects that I've noticed so far and am on 3rd week of treatment.

[Dirty Don]

Hi Sangye, I love Mayo! I am so fortunate, in so many ways right now!! LOL! Anyway, I am in rheumatology with Dr Harman. She consults, as all Mayo docs do, with the rest of the staff, including an ENT, a pulminologist, and my regular internist. She's awesome, proactive, and has immediate access to the best. After dealing with my near death experience this summer (lungs went berserk as part of the original diagnosis efforts, so had surgery...almost killed me I guess, so I'm told! LOL! anyway, the Mayo docs I'm associated with are all Wegs familiar and experienced, they're all over me...seems they love a challenge!! I AM lucky! Thanks for the welcome! Am very glad I found this group!

[Dirty Don]

Thank you, yes, after first seeing this forum, I knew from the discussion threads that this would be a good resource, and possibly even a place of comfort when things aren't going like I think they should!! LOL!

[RudiK]

Hello DirtyDon and Dennis, welcome to the forum. This is a great place for information and support. I don't post as much as some of the other fellow WG patients, I'm not good at expressing myself, but "check in" daily and will share my knowledge if it helps. I'm from El Paso, Tx and was diagnosed in April of this year after having a variety weird health issues during the previous year. Like so many on this forum, I was lucky to find a doctor that recognized the illness and who brought in another doctor to treat it, otherwise I would be dead by now. The WG is now in remission. I consider myself one of the luckiest WG patients, if there is such a thing, in that I that don't have anywhere near the many other issues that some of our fellow WG patients on this forum have. Even so, I'm "stuck" with severely damaged kidneys (functioning at 40%), no feelings in my feet from the ankle on down, limited feelings in my right hand and "plucked up" left ear. I spent four days in the hospital, received three blood transfusions, and was the treated with Prednisone - 60 mg, Cyclophosphamide - 100 mg, and Sulfameth/Trimethoprim. I'm now off the Cyclophosphamide -replaced by Azathioprine - 150 mg, and off the Sulfameth/Trimethoprim, the Prednisone is now down to 7.5 mg.
Good luck getting into remission and staying there. Rudi K.

[Psyborg]

Welcome to the forum

[Dryhill]

Hi Dirty Don and Dennis,

Welcome to the Forum, it is a great pity you have to be heref you need advice or support this is the place to be. Like Rudik I do not post that much but do come to the forum each day to see what is going on.

[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!

[maria garcia]

Hey all, have been reading your posts for a while...Andrew got me in finally. I was diagnosed this August, 2011 with what appears at this point to be a limited version of WG...mostly in my sinuses, some nerve damage (dropped foot), and all the irritating symptoms. If a friend and my wife hadn't seen that I was not doing well in early August, I may not be here today. I contracted pneumonia & possible Valley Fever (live near PHX)...after a lung biopsy, scaring my wife & children pretty badly, the hospital I was in sent my tests to Mayo Clinic as they could not be sure of what was going on in my lungs. The Mayo pathologist diagnosed WG. Now Mayo is treating me (prednisone & Methotrexate)...the clinic is the best, I am the luckiest. Has not been fun, am interested in sharing and learning more as this journey progresses...as much as I can. My best to all...am looking forward to meeting some of you in here.

Don, welcome! Did you have wegs involvement in your lungs? Or pneumonia? My daughter also is taking MTX and prednisone. What are the mg you have been prescribed?

[Dirty Don]

Hi Maria, first of all, I've been reading your travails with your daughter...understood, I remember that age watching my ex and our daughter interact...and she wasn't ill. So, now you two have added WG to it...just remember, she needs you...in all respects..she won't admit it, you won't stop feeling badly, so the mix is not good...you need to step up for her, not for yourself...hang in there!! You both will be fine...

I had some kind of 'particulate matter' in my lungs which was the WG flare up that sent me to the hospital and surgery, blah blah blah. Docs thought it was pneumonia at first...acted like it, looked like it on Xrays, but when they went into my lungs, took some samples (yeah, YUK!), someone had the sense to 'sense' that pneumonia may not be at the root, so they sent the sample to Mayo...Mayo confirmed WG, so I, luckily, transferred over to Mayo once I was allowed out of the hospital that saved my life. So, now, what was in my lungs has pretty much cleared up, I'm on mtx and pred, low doses compared to some I've seen on here...lucky guy.

The best to you maria...the reason some of us can laugh is because we've known from the start that this disease is not curable, and the reactions to that have been many, many like yours, but ultimately we have to step up to accept the fact that we have this disease...it's too bad, not right especially in children, but someone has to step up and we have to do it for ourselves and for those who may not be able to do such...you will do that for your daughter, you are in fact, just being on here getting info is one of the best things you can do...love her, treat her, accept her...she'll eventually see your role model...you're the best Maria, hang in there!! Patience and persistence...

[maria garcia]

Thanks Don, it so frustrating bcse the more I step up the more she pushes me away and tells me to get away from her room etc. Im trying to give her space now and see if that works but I need to make sure she takes her meds everyttime I ask if she has taken her med she comes with a rude remark. Thank you for writing back. What are the mg of your meds?

[Dirty Don]

pred daily: 12.5mg, very low; mtx: 60mg weekly, all in 1 day...had to adjust dosage times to regulate side effects of mtx better. Oh, and folic acid to resupply the damage done be the mtx...jeez!

Ah, your daughter sounds soooooo teenaged!! LOL, I was an English teacher in high school, and coached too for 32 years...so I know teens pretty well...hehe! Which is to say, I don't know much!!! Give her room, but make sure she understands, in a practical way, in what kind of condition she is really in.

Be there when she falls, literally and figuratively...it's all you can do, she won't realize your efforts till later in life...remember yourself as a teen???? LOL, I do of myself, and I would have kicked my own butt several times!!! LOL...

Take care Maria...all will be well!