New to WG.com from Houston TX

[keegan55]

Hi Brian,
Wonderful u are helping your wife with this.
My story :Like most it is long and many many tests which were in conclusive. I had nodes in lungs and they they thought I haf cancer. I endedup with wedge biopsy to be sure it is WG. did loose 1/2 right lower lobe. I an also anka negative so if they just relied on blood I still would be suffering. I would always want a biopsy to be sure. I am on Mtx cannot take pred due to other health issues. I seem to be doing ok. This is a great group so much help and support. Your wife will need to get pro active in her care. Do reading etc. WG not as hopeless as years ago. I love the help offered here.it is good you are so much support for your wife

[Juliesjewels]

I'm in Houston & wasted 4 months with a local rheumy who had never actually treated a WG patient. I was getting sicker & sicker until my hubby had enough & requested a referral for me to be seen @ Johns Hopkins! Best thing I've ever done. Dr Rebecca Manno @ JH is now my dr & I'm on the path to remission only after finding a qualified WG specialist!


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[Miska]

Hi. I am from Houston too. I see Dr. Filemon Tan at the UT Physician Building. I am an Anca negative WG. My doc is good but I think they are just patching my symptoms. I don't feel that I am headed to remission. I have had symptoms non stop while on methotrexate and prednisone.

[annekat]

Hi. I am from Houston too. I see Dr. Filemon Tan at the UT Physician Building. I am an Anca negative WG. My doc is good but I think they are just patching my symptoms. I don't feel that I am headed to remission. I have had symptoms non stop while on methotrexate and prednisone.

I am similar, have had WG for 3.5 years, and have been on methotrexate and pred for about 2.5 of those after having been on CTX for almost a year. I can't complain too much right now about my symptoms, but there are some stubborn ones like fluid in my ears causing dizziness and occasional vertigo. I tend to have a small flare every winter, and then the pred is adjusted to deal with it, followed by what seems to be the never ending taper. I am on 15mg/wk of MTX and wonder if it is enough. I weigh about 140 and am not sure to what extent the dosage is based on weight. But I wonder if I took just one more 2.5mg pill of MTX each week, maybe it would help to keep me from getting flares in the winter and maybe I could taper off the pred better. At this point, my doc will go up on the pred if necessary but doesn't want to go above 15mg. MTX. He is not very experienced with WG but is somewhat arrogant and stubborn. There have been several times during my treatment that I've felt I might be undermedicated with the immunosuppressant, and the CTX dose was usually 100mg, a bit low for my body weight at the time. But I came through it OK and it knocked out the most severe symptoms. But I feel as you do, that I keep going on at the same level indefinitely and, though not doing badly, can't quite reach what would be called remission and keep having to play with the pred when symptoms increase..

[kaysee]

Welcome Brian,
I just found this group today. I was diagnosed with WG in April 2014 after having numerous symptoms for two years. I have allergies and constant sinus problems so never connected that to something else. I had the swelling in my ears first on one and about 6 months later on the other. The redness and swelling was all in the cartilage and it was extremely painful. I don't think I have holes in the eardrums but I have not been to an ENT. My WG has damaged my kidneys so that is my biggest concern right now. It was an infectious disease doctor who was treating my ear infection who sent me to a rhuematologist. He made a C-ANCA diagnosis and a week later a kidney biopsy confirmed the WG. I've read that people with WG don't always have a positive C-ANCA and since it might work the other way around I wanted the "visual" biopsy confirmation. I live in the Houston area (League City) and my rhuematologist is in Webster. I will have my second round of Rituxan infusions starting on Monday. I like my doctor, he is convenient to where I live, and he does the infusions right in his office. He works with UTMB in Galveston as well.

So far I've been having a hard time with this myself, but I am trying to be hopeful. Sounds like others have had it much worse than me.
Karen

[annekat]

Welcome, Karen. You have come to the right place. I had problems in my ears too but not in the cartilage. I have permanent hearing loss, wear aids, and also lots of bone erosion in my sinuses and nasal cavity due to WG involvement there, including a saddle nose. I had some fairly severe lung involvement at the beginning, but luckily, have had no kidney issues. Every case is different, with common threads running through them. It sounds like you are getting good treatment and like you say, there are people worse off than both of us. I hope things move along for you and you get into remission or at least feel a lot better, as I do. I look forward to seeing more posts from you and hope you find this forum to be as valuable as I do. You are not alone!

[mrtmeo]

Please do keep an eye on kidney function.
I have read that the average time to kidney failure is 2-3 years if kidney become involved, so it is important to do regular CMP's to keep an eye on her kidney function.
Not everyone experiences pauci-immune crescent rapidly progressing glomerulonephritis, but when it hits, it hits hard.
By the time a person is peeing ice tea colored urine, the damage has been extensive, so please keep an eye on kidney function.
You can watch many people's success stories from the Vasculitis Foundation here
Vasculitis Stories

You can contact the VF as others have stated and they can direct you to a local chapter or someone who can help you get the info you need.
Good luck and be well.

[vdub]

Hi, Brian! Bob gave you some of the best info -- i.e., don't get too freaked out. Yes, serious, but what you see on the internet is outdated and overstated. I'm sure you will find any number of good docs in Houston, but if for some reason you do have to go to a vasculitis center, don't forget the University of Utah at Salt Lake. I'm sure there are a number of non-stop flights from IAH to SLC.

Pred and methotrexate seem to be the old stand-by drugs for gpa. Mary is probably already finding out the miracles of pred -- staying awake 20 hrs a day, eating everything in the fridge, getting all the old projects done that had been on hold, and, of course, feeling pretty good. Unfortunately, there are some bad side-effects, too. Weight gain is the one people have the hardest time dealing with. I guess the best advise I could give is just accept it and don't fight it.

[aewaustin]

Regarding CTX... I had wegs 20 years ago when there was no RTX, so we used CTX. In 2010 I got a flare again, got RTX a few months later and initially it helped greatly but within a few months it just could not put the wegs in remission. Based on my previous experience with CTX I opted for the heavy hitter. I did not want to linger in the kinda sick world for any longer. CTX this go round was very rough, for a month I was too weak to drive, and I gradually lost my hair. BUT it did get me back to my life and I am not in the kinda sick limbo. If I got sick again with a big flare, which seems to be all my body knows, then I am heading straight for CTX. My wegs involves my kidneys, so considered the major organ type.

Also watch your wife's numbers for low ALP and low B12, those are signs that she is not absorbing foods which could mean celiac or food issues. I realized that I most likely have celiac. By eating foods that attack your immune system it is harder for the body to get to a place when it is not having immune issues. I just got the Alcat test to test for food sensitivity and I have issues with foods that I eat every single day. So I highly advise that you look at the wegs angle with the docs, but while you are doing that make sure her gut is good, because many with autoimmune disease also have leaky gut. And btw I never had gut issues, never though I had food issues at all, but now realizing that my neuropathy is all food related. And if she does have to get chemo then it totally jacks up your gut because it kills everything in there, the good stuff and the bad, so make sure she gets on a probiotic. These are things my doc never mentioned

[keegan55]

Welcome this is a great group. I am pretty new. I had symptoms for a few years but never dreamed it was GPA. I had bad ear unfection at 68 first ever. Then a skin lession that took 4 months to heal with surgery. Finially there were 5 nodes in my lungs and coughing up blood. They tried easy biopsies could not get enough had ti have wedge resection of rll and rml lungs I lost 1/2of the rll and a portion of rml. The left node still thete but smaller now. I now have some nasal bleefing which they have no clue. I do believe its the start of it there. Make sure you have the best dr you can get. The group here will help u so much. Your support is so important I do not have much with my family and it makes it tough.All the info you get here is so valuable. I am still struggling with the concept of this disease