Hello

[chris.wg]

Well, to start with the obvious my name is Chris. And I been living with WG for more then a year now. Before I get started I will apologize to everyone for the wall of text my post tend to be. I get a thought in my head and just go with it. I promise to try to keep it to a minimal on this forum. So here is my story. Last march I decided to visit the local medical express for symptoms, that to anyone who has never experienced them, wont seem like symptoms and will seem strange. I had a sharp stab in my sinus cavity. I mean blockage and something was stabbing me. The doctor who checked me out was very understanding and had nasal surgery before. So she assured me this was a scab that some how formed in my nose probably from using a antihistamine as I had a cold for the whole month before and used Afrin for the first and only time in my life. She prescribed me to take saline in my nose 3 times a day plus some ayr gel and flownase. This was a relief to me because while I couldn't figure out how I was convinced I broke my nose and had cartilage in it jabbing me it hurt that much. Fast forward 2 weeks. The "scab" didn't feel like it moved out though I thought I was seeing pieces of it here and there when I blew my nose. Any rate I had a vacation time coming and took it. Over my vacation I ate very little and slept a lot. But being the stubborn person I am, I just said it was my body reacting to this issue I was having. After vacation when it still wasn't out 3 weeks later and it seemed to be a lot worse with a stuffed up nose and everything I went into the doctor again. They said it seems to have developed into sinititus. <spelling> Put me on anti-biotics and that was it keep up the saline till its out. I return to work and my coworkers keep telling me how awful I look <after all I barely ate>. I told them I was feeling fine and the truth of it is to this day I honestly didn't feel bad outside of the sinus issue. Well they started saying things to my boss. After a week of him watching me work. He said Chris I have never done this before and I don't like that I am doing this now but I have to. You are not getting better your breathing is irregular <something I didn't notice> You are going to the emergency room right now and are not allowed to return to work without a written doctor's approval. Ok. So after a short time in the ER the doctor there said well you have small hole in your ear drum. <I had a hard time hearing in the left ear> and it was probably caused by the build up in your sinuses and yes they are extremely infected. But some stronger antibiotics and that should be it plus something for the ear. IS THERE ANY THING ELSE? Honestly doctor I don't notice it but people tell me I appear to struggle with breathing. Hmmm I am going to do a chest ex-ray before I let you leave. Ok your the doctor. So I was 5 mins from walking out the door. To now being told your not leaving tonight your ex-ray looks like you have pneumonia with a abscese in it. 1 week later of testing trying to figure out if its a fungal infection. How are these 2 related. And why is nothing testing positive the lung doctor hinted it may be this strange thing I never heard of called wergners granulomatosis. Another blood sample sure I can do that. Tissue sample ????? how so..... There was talk of cracking my rib cage open because the tissue was too hard to cut with a small surgical tool. I freaked told them absolutely not. <heart trouble is hereditary in my family both sides I didn't want to go down that avenue until I had to go down it.> They tried a needle biopsy instead and sent the results out would be back in a day or 2. In the mean time I developed a rash. The lung doctor seeing this and already having the anca count from my blood test started me on a steroid certain he was right. Guess what... well I'm on this form so no need to guess. They called in the rheumatologist who had treated the most cases in our 3 city area. a whole whoopin 3 made me feel good <he actually turned out to be a great doctor I lucked out>. He started me on prednisone 60mg Bactrim ds and 200mg of Cytoxan every day. Eventually I got a rash and he took me off the Bactrim. And I weened off the prednisone. But here is I guess what made me sign up for the forum. The concern I have. My anca while dropped isn't enough for him to even reduce the Cytoxan dose and I been on it since last April. This has raised the doctors eyebrows also. Because as your aware Cytoxan has harmful side effect itself with prolonged exposure. All risks I obviously knew being treated. But the doctor Is considering a different drug treatment and may send me to a major medical university for a 2nd opinion. Are the other drug treatments any better for me? Something tells me probably not. Thanks to all who waded thru this wall of text <sorry again I will try to get better I promise.> -chris

[annekat]

Welcome, Chris. Several of us have been on Cytoxan for a year or more and haven't suffered serious effects, but it is always possible, and it is preferable to get off it sooner and switch to a milder drug such as methotrexate or Imuran (azathioprine). It's troubling that all that time on Cytoxan hasn't done more for you in lowering your anca reading and such. There is another drug, rituximab, or RTX, which could be tried, as it is considered preferable to CTX by many, in terms of toxicity, and does a very good job with severe cases of WG in many people. I'm also not sure why they weaned you off prednisone if they were finding it necessary to keep you on that much CTX. I hope you have been drinking lots of water with the CTX. If they are considering switching meds and sending you to a major med school for a second opinion, that is probably a good thing. You might also check out the list of vasculitis specialists on the Vasculitis Foundation website; look under Medical Consultants, which is on one of the drop down lists at the top of the main page. Any doctor may consult with these world-reknowned specialists. Good luck and keep us posted!

[chris.wg]

Well I was taken off the prednisone because my symptoms are under control. Hell from the way all my doctors which including my gp is 4 who I see. I am the poster boy for wergners remission. Though I do still have sinus issues the ent dosnt really need to see me again he says all my current issues are caused from scarring. And the pulmanologist moved his visits up to every 9 months this past visit. its only the rhematologist I still see all the time he is monitoring the treatment. What's confusing is the way the symptoms and the Anca don't match up. With everything under decent control you think the anca would come down. Though this past week when I got a cold. I noticed my lungs still take it harder then before Wg.

[mishb]

Hi Chris.

I'm glad you finally made it on here - what's kept you so long :flapper:

I agree with Anne, that you probably should see one of the specialists to get another opinion.
They see hundreds of Wegs patients and you don't have to see them very often, maybe just the once and then you see your normal rheumy for follow-ups.
The specialist will consult with you guy.

I'm glad you are feeling better, just take care with that cold - as Anne can also tell you, a cold can turn into something worse.

Did you ever get back to work?

[Alysia]

Hi Chris,
I like your writing, gives the feeling of being on the "WG roller coaster" :w00t: (to hell and back).
welcome to the forum :thumbup:

[chris.wg]

I returned to work between the 3-4 months on treatment. And to answer what took me so long :P honestly I would do a weg search about once a week to start then once a month and now every month and a half to 2 months to see what is new or if I heard something from the doctor. I was told about it being renamed. Couldn't remember the name and wanted to tell the family so it must have just been how I typed it in the search engine this time.... I seen the site for the first time about 2 weeks ago and book marked it then. I wasn't sure if it was somewhere I belong or not because some how I have as I stated been a lucky one other then sinus scaring and meds for the most part my life is back to normal. Yes some times I have the issue of wondering what if. I believe that's normal for anyone who has been thru anything even remotely like this. But for the most part my family is my rock.

[woz]

Welcome Chris.

I found this website, on all things 'Wikipedia', since then I have read just about every thread posted here. The information here is excellent, and just ask a question, the people here are a wealth of knowledge, and very generous in giving out information on their experiences. The more you know about what you have, the easier it is to relate to your doctors.

All the best for the future........Woz

Ps. Thanks Andrew for all the work you do, Administrating this Website.
I will buy you a large beer one day, maybe a couple! next time I am in Canberra.
or if you ever come to the sunny north-coast of N.S.W.

[Wegetarian]

Welcome Chris!

It always amazes me how I can't see two of the same stories about WG. Everyone seems to get affected so differently. Must be so hard for the docs to diagnose it too.

[annekat]

I'm glad you are doing so well, Chris, and your symptoms are so well controlled. So it seems they are keeping you on CTX because you still have a fairly high anca reading, even though you are otherwise doing well enough to have been able to get off prednisone. I know I've read on here many times that the anca reading isn't the be all and end all of determining disease activity. In fact my anca reading at dx was very low, but I was very sick. Seems everyone is different in this respect. So I wonder what the experts would say about keeping you on that much CTX for that long under the circumstances. I hope your symptoms continue to be well under control!:thumbup:

[chris.wg]

I appreciate the welcome everybody and I hope to be able to contribute as well. If anyone has any questions of me feel free to ask.

[Dirty Don]

Welcome Chris...as you know, this is the best place to get the best info on WG. Like you, I went thru very similar dx with WG (GPA) cept I'm on mtx. My pred will be gone next month, and perhaps next year on the mtx. I'm two years from dx, and all numbers are normal except anca, which continually hovers at the upper line. And, I was in a coma for ten days, so they went into my lungs for best shot at pathology...it worked and doc didn't break a bone! Best to your recovery...be patient and steadfast...