Intro

[Victoriaitsnosecret]

Hi everyone. Glad to be on a site with real people having similar experiences than to just hear from doctors.
I am newly diagnosed. I went into the hospital right before Thanksgiving. I was having some chest pain. I thought its anxiety or it's heart related so i better check it out.They ran tests. An X-ray of my lung indicated something was wrong. CT of my lung and I'm being admitted for TB. I have cavitary lesions on my lung.
I tell the docs there is no way I have TB. I get tested for TB every year for work and just had a negative TB test a few weeks ago. I work with homeless families and I'm at risk. Most of the docs are sure it's TB. I immediately assume its some type of cancer and I'm going to die. :crying: I'm quarantined and spend the next 5 days being poked and prodded. Tested for every disease, bacteria, fungus. The doctors are puzzled. I have these cavities in my lung and I'm not sick at all. No coughing. Besides feeling fatigued often I'm otherwise fine. I have a few night sweats. My nose is stuffy but I assume it's the dry heat in my house so I don't think to mention it.
During rounds I meet my pulmonologist. Dr. Bertozzi. He thinks I might have this rare disease called "Wegeners Granulomatosis." This is a pretty scary disease and can be fatal. They do a needle biopsy. The only information they get, it looks infectious. My ANCA tet is negative. My blood work is normal. I leave the hospital after 5 days not knowing what is causing these holes in my lung. Follow up with Dr. Bertozzi. (I couldn't ask for a better doctor. He spent so much time thinking about my case and consulting with other docs.) He's thinking I might have ths disease called Echinocaucos. Its a parasite I could have picked up traveling to Morocco. Schedule a bronchoscope to confirm. Thats negative. A few more weeks pass and nothing. I'm still feeling fatigued but healthy. My nose is still stuffed. It starts bleeding all the time and it's so blocked I can't breathe through it at all. Then one day I'm walking by a mirror and I look at my nose. It doesn't look right. The bone is standing out. I tell Dr.B. he says it an be a sign of Wegners but it's not especially spongy and he takes a quick peek nothing out of the ordinary up there. The cavities in my lung are growing larger. Its time for a "real" biopsy. They need a good chunk so they have enough to test. About 2 months after my ER visit I get a diagnosis. It's Wegeners. It's limited since my kidneys are not involved. Thank God.
So here I am. Sorry for the novel it just sort of came out. I'm on prednisone, methotrexate and Bactrim. I saw an ENT doc who did a CT of my face and confirmed the diagnosis. There's crusting and erosion in my nose and my sinus passages are very thin. He gives me a nasal rinse. Finally I get some relief. I missed breathing through my nose. I've been on the meds for 2 weeks now. I haven't felt any side effects so far. I'm crossing my fiAngers. I did experience some nausea and dizziness yesterday. Not sure if it's related. Besides feeling tired all the time im ot feeling sick. I do notice aches and pains. I was trying to help my son with a project and had to use my hands to twist wire. My hands hurt so bad I couldn't finish. My legs feel like lead at the end of most days and I just feel exhausted.
I'm thankful that I'm not feeling sick but am usure what to expect. Does anyone else ave a similar version go wegeners?

[Dirty Don]

Welcome Victoria...you,ve come to the right place! Good people, lots of knowledge and experience here. Please ask lots of questions as you progress thru your stages of WG, especially of your docs! My case is similar to yours in some ways as I have a 'lite' version...no kidney involvement, temporary lung problems and ravaged sinuses! Am on pred and mix also. I was diagnosed a year and a half ago, so have stories for you! Best of luck and ask away!

[drz]

Welcome! Glad to hear you generally feel OK. Hope it lasts. Usually things improve after diagnosis and correct treatment begins. It is pretty typical for many, maybe most of us, to have encountered difficulty in getting a correct diagnosis initially. I remember also thinking I had TB or some terminal cancer upon my first admission. Or maybe some other weird medical problem from South Africa or a bug bite I had the summer before when my symptoms began to get more pronounced. Glad you got it finally diagnosed so they can sort out the treatment and start fixing things up for you.

[mishb]

Welcome Victoria
I guess the secret is out - you are one of us :biggrin1: (sorry, bad I know)

You treatments sounds very familiar - TB, Hep C or HIV was one of the first things they tested in me - before the sinus biopsy.
It was about 15 months from the time my sinuses started until diagnosis back in 2010. The joint pains started about a year before the sinus infections.

Oh, it's a terrific disease, apart from the pains and fatigue, I have never had a feeling of sickness with it either, but don't let that fool you......it's a tricky little bugger and something can just sneak up on you with warning.

There are so many awesome people on here that are willing to answer your questions, keep you from losing your mind and having a few laughs with you along the way.

Take care and remember to..............

[pberggren1]

Victoria:

Where do you go to see Dr. B? I'm just concerned you are not getting the proper care. One thing that jumped out at me is that you are on methotrextate (mtx) and not Cyclophosphamide or Rituximab. Those are the big guns and usually are used when the lungs are involved like you have.

A good nasal rinse to get is the Neil Med one at most pharmacies. Ask you pharmacist this week to show you them. They are not too expensive. But do not use tap water. Use distilled or RO water and warm it up slightly. You don't want to use cold water and water that is too hot can harm the nose as well. I personally use a Waterpik for rinsing the nose. I have found that to be the best.

[Psyborg]

Welcome Victoria, glad you made your way here. As Phil said it is curious to go straight to MTX...CTX or RTX is pretty standard for the first wave.

[renidrag]

Welcome Victoria, this is the place to be for information and assistance. Shortly someone will be on to ask you if you have a rheumatologist versed in WG and vasculitis. I am just South of Boston and go to Boston Medical Center under the care of a PCP and Dr. Paul Monach, a Rheumatologist. And I also have a lung doctor there. I only have lung involvement and am presently in remission. Your intro is quite similar to a lot of folks here, I too was told it was TB until two bronchoscopes brought a diagnosis. Look forward to hearing from you and hope you start feeling better soon.
Dale

[chrisTIn@]

Welcome to the forum!
Rinsing your nose sure will help you to get rid of the 'stuffed feeling', but most important is the right medical treatment.
I agree with Phil Berggren at that point.

It will take a while, but with proper treatment the feeling of tiredness - fatigue will also diminish.
At least, that is my experience. (I also have 'limited' Wegeners/GPA).
Good luck to you!

[Dirty Don]

Welcome Victoria
I guess the secret is out - you are one of us :biggrin1: (sorry, bad I know).

THAT is sooooo bad Michelle...Victoria...secret...I get it...sorry Victoria, I, along with some others, have a very weird sense of humor on here...call it Weggie humor I guess!!! But, we continue to laugh both at ourselves and life in general...such a deal we got in WG (oh sorry, got nailed the other day again...it's GPA!!!!!).

[HopeinTN]

I'm sorry you had to go thru all of that, and it sounds familiar to my story. I had to have an open lung biospy too and it was no walk in the park. It actually turned into a lobectomy. But that did the trick, and got me the diagnosis as well. So far, it's in both lungs but everything else is clear! I've been on Cytoxan, prednisone and bactrim since Oct 2011 and hope to step down to something else by June 2013.

I'm so glad you found this site. It's a life saver and nerve calmer at the same time. Good luck!

[Dirty Don]

Welcome Victoria, glad you made your way here. As Phil said it is curious to go straight to MTX...CTX or RTX is pretty standard for the first wave.

I've found it interesting also that my rheumy put me straight onto pred (of course) & MTX...since I've met all of you and heard the stories, MTX doesn't seem like the 'first line of defense' for most of the people. On the other hand, it's working...hmmmm

[drz]

I've found it interesting also that my rheumy put me straight onto pred (of course) & MTX...since I've met all of you and heard the stories, MTX doesn't seem like the 'first line of defense' for most of the people. On the other hand, it's working...hmmmm

I have heard of others having similar experience for various reasons. Some times they are saving the bigger guns for a more serious flare or the patient has some issues that preclude use of the other drugs, especially CTX. Those of us with kidney damage can't use MTX so it is not an option for some of us.

[ArlaMo]

Welcome, though sorry you had to find us all this way. There is a wealth of information here and many wonderful people.

[Victoriaitsnosecret]

Thanks, everyone for the replies. Its good to hear from folks dealing with the same thing. I do have a rheumatoid doctor. Mark Robbins. He was recommended by my pulmonologist. Since I have limited Wegeners and it's not very aggressive right now he chose to put me on methotrexate first. It is successful in getting people into remission but does have more chance of relapse in the long run. But it's far less toxic. I feel like I've been getting quality care. My lung doc had actually called it the first day but I don't think he could get anyone else to agree. I told him after he should have got up all in their faces and been like "told ya! " (I also have a questionable sense of humor.) I also make the joke of being a "meth head" but a lot of people don't think that's too funny. (I shoot meth(otrexate) in my leg. My first time doing that was hilarious. I shot it up into the air. It was in my hair. But I finally managed. The doctors are really positive that this will go away with treatment. Might come back later. I'm sort of waiting for the other shoe to drop hoping it won't but can't seem to help it.
Victoria

[pberggren1]

Please keep in contact at least once a week Victoria to let us know of your progress. I still feel that mtx may not be enough for you. And the term limited WG is not something that Wegs docs use.

[Victoriaitsnosecret]

It's been about 2 months since this all started. My nose has been stuffy on and off for about 2 years. I'm wondering will I stay the same? Will it get worse/ can it get worse on the meds? Are there actual Wegener's specialists or just docs that specialize in vascular disease? I know Mass General in Boston has a well known vasculitis clinic. I have an HMO. It's hard to get a referral outside of their practice. They are associated with all the major hospitals. How often should I be seeing someone? As of now I think I'm seeing the Rheumatoid doc and ENT doc once a month. My PCP every other month and will now see my pulmonologist every 3 months.

[renidrag]

Mass General has Dr. John Stone as head of Rheumatology and is also listed on the Vasculitis Homepage. I saw him twice but due to insurance issues could not continue. So I ended up with BMC and am very happy there. I see my PCP every two months and have an open line to Rheumy. If I need him he will see me immediately. In March I can return to the lung doctor that diagnosed me, again due to insurance reasons. I suspect I'll see him once every three months or as needed. With our disease changes can occur rapidly and these specialists know that and will make themselves available. I have blood done every three months.
Dale

[Victoriaitsnosecret]

Thank you. I will check him out. I will have to see if my insuranc will allow it. How long have you had Wegeners?

[Victoriaitsnosecret]

Thank you Phil. I will check in. I'm still trying to sort this all out to. Its a lot to wrap your head around and then there is the rest of your life to pay attention to or try.

[pberggren1]

This is such a major learning curve it is enough to drive one to drink.

[Pete]

This is such a major learning curve it is enough to drive one to drink.. If only I was allowed to drink while on mtx. Big sigh...

[Victoriaitsnosecret]

That is so true. Can't drink on methotrexate! :thumbdn:

[annekat]

Some of us on MTX drink occasionally and it's not the end of the world. But it's not a good idea on a regular basis, for sure.

[annekat]

Hi, Victoria,

It's taken me a few days, but welcome to the forum! We are so lucky to have it. What a great and knowledgeable group of people.

Reading your post, I saw some similarities to my situation, but no two are the same, I think. I was also found to have "numerous" cavitary lesions on my lungs shortly before diagnosis. I'd been going to an ENT for a couple of years with continuous sinus and ear issues, which were undoubtedly Wegener's (GPA), but it was thought to be recurring sinus infections related to allergies. When my lungs suddenly became very bad and I thought I had pneumonia, I had an xray that showed irregularities and was put in the hospital overnight for various tests. A CT scan showed the lesions. But in my case, the overseeing internist at the hospital guessed right away that it could be Wegener's. I was only in overnight and it was up to me to follow through on getting dx'ed. When I got home, I noticed that my nose looked unusual! I had already done research on WG and knew about saddle nose, and that's what it was; the bridge of my nose had dropped. My glasses cover it up pretty well, so I don't know how long I'd had it. I got a quick appointment with my ENT and when he saw my nose, he was pretty sure it was WG. He did a biopsy on the spot which of course came back positive for WG.

I also had the pain in my hands you mention, along with other joint pain. Many of us with WG have that but it is usually controlled with our meds. And I have the typical crusting in the nose, and erosion and thinning in my sinuses. Haven't had a CT scan of my face since a couple years earlier, but it showed thickened mucosa and I'm not sure what else. I also have hearing loss from eustachian tube dysfunction.

As for drugs, because of my lung issues, I was started on CTX, prednisone, and Bactrim, and the CTX made my lungs a lot better fast. The nasal and ear stuff drags on and on, and the fatigue continues, but those things are a lot better than they were. I cough a lot from the junk from my sinuses getting into my windpipe. I do the NeilMed sinus rinse at least twice a day and feel I can't do without it. I'm now on MTX, along with the pred and Bactrim, as it is not good to be on CTX any longer than necessary. Like you, I am lucky not to have any kidney involvement so far.

Good luck, and we hope to hear a lot more from you!

[Victoriaitsnosecret]

Thanks for sharing with me. Did the appearance of your nose get worse? I've seen pictures of people with WG and their nose looks really smushed in. I'm hoping the medication will stop it from getting worse. I use the Neli-med 3 times a day. Sometimes I'm amazed at how much stuff can come out of one nose. Geesh! Did you ever go off prednisone at all? My doctor started me on 40mg 3 weeks ago and has already begun to taper. The plan is 8 weeks prednisone and then just the methotrexate. Did you have any side effects to the medicines? The lesions in my lung have started to shrink already. It's difficult not knowing what to expect. - I really would love a cocktail too. I'm going to have to ask the doctor about it.

[Dirty Don]

8 weeks on pred and such a fast taper? Seems short to me...be aware of anything resembling a flare.

[annekat]

Thanks for sharing with me. Did the appearance of your nose get worse? I've seen pictures of people with WG and their nose looks really smushed in. I'm hoping the medication will stop it from getting worse. I use the Neli-med 3 times a day. Sometimes I'm amazed at how much stuff can come out of one nose. Geesh! Did you ever go off prednisone at all? My doctor started me on 40mg 3 weeks ago and has already begun to taper. The plan is 8 weeks prednisone and then just the methotrexate. Did you have any side effects to the medicines? The lesions in my lung have started to shrink already. It's difficult not knowing what to expect. - I really would love a cocktail too. I'm going to have to ask the doctor about it. No, the appearance of my nose hasn't gotten worse. I don't know if there's any chance it will. I have seen some awful pictures, too, and mine is not nearly as bad as some of those, although I'm not happy about it. I think a lot depends on the original shape of one's nose, how it ends up looking when it collapses. If yours has just started, I suppose it's possible it could continue, but if the drugs are halting the progress of the disease, I'd think it would stop that, too. Mine seemed to happen all at once, or I didn't notice the beginning stages.

Good that your lesions are shrinking. That is the thing that happened fastest with me, too, although according to my doc the remnants of them are still there. But my breathing is good and the coughing I'm doing is from the sinus junk getting into my trachea. I've read on here that the sinus stuff takes longest to get better. I don't know that it will ever go away completely, since my sinuses are damaged and my be producing excess mucus from now on.

A tip you might try before the NeilMed: heat up a bowl of water in the microwave and add some mint or eucalyptus or plain salt, then lean over it with a towel over your head and inhale for several minutes. This will help loosen up the junk in your nose and sinuses and make it come out easier. Relaxing, too. Just beware of too hot.

I'm still on 10mg prednisone after almost 2 years. Some people get off it sooner, some never get off it. I think I'll be tapering more pretty soon, but at this stage you must go very slowly to avoid a flare. (I would not even have a clue about this without this forum.)

As for the cocktail, yes ask your doc. My doc never even mentioned it; he doesn't say much. The info sheet that comes with MTX does say to "avoid" alcohol but doesn't expressly forbid it. A habitual drinker or alcoholic would have a problem with this, as both MTX and alcohol are bad for the liver over time. But there have been conversations on here where people on MTX have an occasional glass of wine or whatever and it doesn't seem to be a big deal. So use your judgement.

Knowing what to expect.... that is a big one! That's a lot of what makes this forum so valuable. I hate to think how in the dark I'd be without it. I think maybe my doc has figured out that I'm reading it... in any case, he never takes the time to tell me much of anything.

Good luck with it all!

[Jaha]

Victoria,

I'm glad you joined us, sorry that you have to. Your story is much simular to mine with the cavitated lesions in the lungs. As, with you it was a puzzle for the local drs. My labs were not showing any autoimmune, and I was sent to an onocologist who had a lung biospy done with no results. After 2 months of getting sicker and sicker, a Thoracic surgeon did a lung resection and the biospies came back with nothing. They couldn't figure it out so I self referred to CC to a pulmony and he a team of rheumies took the frozen biospies and dx me with Wegs, it was 8months from when I got sick. I also had the pain in hands/feet/joints and some sinus involvement. They started me on 60mg preds,mtx and bactrium. I am now on Cellcept and have had two series of rtx infusions. It sounds like you are making great progress, so keep up the good work.
Jana

[Shannon]

Hi Victoria,

Reading your story sounded so much like what I, and I suspect many WG patients, go through. My nose was flat, I was sick constantly, losing weight, and when I coughed up blood the third time and my doctor was still calling a 'sinus problem' I insisted on testing. Even after being referred to the University of Michigan with all of the clear signs of WG my darn blood work still came back perfectly normal. They put me on 60 mg. of Prednisone, MTX (20 mg. weekly) and Bactrim 3x a week and just kept testing and retesting my blood until finally the WG showed itself. I finally have a doctor who believes in treating the patient and not the tests but unfortunately for us, insurance companies don't always feel the same way so we were all relieved to have final confirmation. I had the lung biopsy (which was non-conclusive and caused a lot of long-term pain from the scar tissue), the bronchoscope (it's best to be in a twilight sleep for that one), the sinus biopsy...the whole works. I did have to have my nose rebuilt because it was so bad. A word of advice for anyone having this done, they used ear cartillage the first time and it isn't strong enough to stave of the flares that you will have. I had to have it redone and they used cartillage from my sternum along with a metal plate that is draped over my entire nose (under the skin). It had to be performed by a facial reconstruction specialist rather than an ENT. It has been five years now and my nose is still doing great. I just wanted to let you know that like many others have said, you are not alone. It is a terrifying diagnosis but by following the doctors instructions and keeping yourself healthy life can get back to normal. I also wanted to quickly add that it took years for me to realize that because my kidneys aren't involved and my WG is considered 'limited' that it is no less severe and needs to be taken seriously. It has been 7 years for me. For the most part I am healthy. I cough A LOT, but I read in someone else's post that it is from the sinus drainage, which I have been wondering about. I also have a new area effected which is my right eye. It white part turns bloody from time to time and they add prednisone drops to the line-up and it quickly improves. If you're new to Prednisone make sure you ask the people on the site questions as they arise. The doctors don't tell you a lot about that drug. It's a miracle drug, but it has it's side-effects for sure. I wish you the very, very best. Don't be afraid. With the drugs they have it is now possible that you can lead a long, and happy life and manage your symptoms as they arise.

Shannon

[Victoriaitsnosecret]

Thanks for sharing with me. Why did th change your medication? Everyone talks about flares would that just be syptoms?

[Victoriaitsnosecret]

Thank you Shannon for sharing with me. I'm certainly learning a lot. With the limited version, its easy for me to say ah, this is no big deal. I know it not true. On the other hand when feeling constantly fatugued and not really having any physical symptoms of illness I feel like people must think I'm nuts.

[Dirty Don]

On the other hand when feeling constantly fatugued and not really having any physical symptoms of illness I feel like people must think I'm nuts.

Welcome, again, to WeggieLand!

[drz]

Thank you Shannon for sharing with me. I'm certainly learning a lot. With the limited version, its easy for me to say ah, this is no big deal. I know it not true. On the other hand when feeling constantly fatugued and not really having any physical symptoms of illness I feel like people must think I'm nuts.

Many doctors agree the term"limited" has no diagnosistic value and have suggested we call it GPA (now) with (listing organ involvement) since that would be more specific and useful. Example might be GPA with sinus and lung involvement.

[annekat]

Welcome, again, to WeggieLand! I can go for hours without coughing, but when I do, people know I have something. But they think it's a cold, of course! Come to think of it, can we always tell when someone has MS or lupus? No. So they go through it, too.

[Dirty Don]

Many doctors agree the term"limited" has no diagnosistic value and have suggested we call it GPA (now) with (listing organ involvement).

I would suspect most of those docs don't have WEGENER's, GPA, or any other such silly name...doesn't matter what we call it, matters what we do with it. I've studied language a long time, turns out most humans don't really care what you call it, but prefer an emotional tag that further describes their involvement in the described action/object/situation. Thus, the changing of languages as we evolve and we react to new, different, and same situations that need branding in OUR determination. LOL! What a mouthful...basically, doesn't matter what you call it, around the old campfire of neanderthals, a grunt worked well, two if you really had something to say!! Coffeeeeeeeeee....wherefore art thou?????