Intro

[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!

[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?