Wegeners by default?

[Jennie]

Hi Everyone

Just a quick update. I did see my ENT about a week ago. He used the little camera to check my throat again and said there was only a slight difference since the last checkup. I was hoping that the prednisone would have worked to reduce the granulomatosis as I had been on it for about 5 weeks and had only stopped taking it one week prior to my appointment. I am still taking methotrexate and will see the Rheumatilogist next week. Not sure what to expect from that appointment, at the last appointment he mentioned moving on to stronger meds if these didnt work. I am a little nervous about what that might entail.

Also I have had a cold for the last week which doesn't seen to be getting better. I am assuming that because I am still on 15mg of methotrexate per week, it is just taking me longer to get rid of it. Any thoughts? I am also not sure if I should take any cold/sinus medication for this? or just wait it out?

Thanks everyone and have a great weekend!

Jennie

[Al]

Hi Everyone

Just a quick update. I did see my ENT about a week ago. He used the little camera to check my throat again and said there was only a slight difference since the last checkup. I was hoping that the prednisone would have worked to reduce the granulomatosis as I had been on it for about 5 weeks and had only stopped taking it one week prior to my appointment. I am still taking methotrexate and will see the Rheumatilogist next week. Not sure what to expect from that appointment, at the last appointment he mentioned moving on to stronger meds if these didnt work. I am a little nervous about what that might entail.

Also I have had a cold for the last week which doesn't seen to be getting better. I am assuming that because I am still on 15mg of methotrexate per week, it is just taking me longer to get rid of it. Any thoughts? I am also not sure if I should take any cold/sinus medication for this? or just wait it out?

I think just wait it out--this time--Jennie. The fact is that your immune system is purposely suppressed, so fighting of any infection, including a cold, is going to be tougher. But "cold/sinus" medications do nothing to change the arc of the infection. They only mask the symptoms, which makes you feel better than you are. Better yet to let what is left of your immune system to deal with matters on its own terms. If you overwork while you have a viral infection, you will just overtax an already desperate immune system. However, an infection that does not go away can also trigger a flare with some people, So, I think, cast a wary eye.

Al

[Dryhill]

In my experiance even prior to WG the only way to get rid of a cold was to let it take its own course, most so-called "cold cures" did nothing. As Al says they might make you feel better but they do actually cure you.

As to being nervous about stronger meds, there can be some unpleasent side effects but they do affect everyone so you might be one of the fortunate ones. Look at Al he lost weight taking Pred!!!!!!!!!!!

Jim

[Sangye]

Jennie, I agree that you should wait out your cold symptoms since it can take longer to clear. However, I also advise you to keep an eye out for signs that it's turning into something more serious-- increasing fatigue, chills/sweats, difficulty breathing, heaviness in the chest, etc....

And....the Wegs dog loves to masquerade as a cold (and sometimes a cold can wake up the dog), so keep an eye on your other Wegs symptoms.

[Jennie]

Hi Everyone

Just a quick update. I saw my Rheumatologist yesterday and he now seems to be sure that I have "limited wegeners" as my throat is my only major issue. I am assuming that having referred to it as limited is a good thing, but I have no idea if that means that it will stay that way or if I should be on alert for any other developments? Also he has decided that I should stay with 15mg of methotrexate weekly for another month or so to see if it finally kicks in and starts to work. My bloodwork is apparently fine but I need to continue to have it checked monthly and also have my ENT doctor check my throat monthly for any sign of improvement. Anyway, I'm not sure what to think at the moment....it's weird to be relieved to finally have a diagnosis but scary to think of the road ahead. I do feel extremely lucky that there is no kidney, lung involvement etc.

Thanks for reading my update. If anyone has any thoughts about "limited Wegeners", I would love to read them.

Jennie

[Al]

Well, Jennie, WG limited to the throat is better than if if it also went after lungs and kidneys, which it often does. It is still nothing to sneeze at, or cough at. Since no one knows how to cure the thing, it is a lifetime journey. And it is highly annoying and time consuming. The reason for regular blood tests is that the disease can flare up at the drop of a hat (so make sure your cap is on tight), an it is imperative to knock it down quickly.

Al

[Dirty Don]

Jenny, I have been 'declared' in a limited state of WG: sinuses pretty bad, some throat problems, early lung involvement now gone, on same mtx as you w/ pred tapered to 10/day, hoping for a another taper at end of month. As Al says though, do NOT take this for a complete improvement...I still have lethargy, some nose blood clotting off & on...you must be wary...not necessarily paranoid which is something I'm still trying to get over...had a bit of bronchitis last week, thought for sure WG was trying to get to me again! Taking some Augmentin now and the bronchial stuff is going away. You'll be fine, just don't let your guard down...best of luck.

[JanW]

I think docs are really getting away from the limited label because it doesn't relate quite to the severity of the diease -- it only means no kidney involvement YET. My wg is limited to my throat and sinuses, however, I have already had tissue damage (saddle nose and windpipe stenosis) so I don't have a mild case of wegeners (this could perhaps be someone with nosebleeds, sinus crusting, fatigue) nor major (kidney failure).

Regular blood tests are imperative because they could sense something is up before you do.

[Sangye]

I don't like the term limited because it implies that there is something limiting the Wegs to a particular area, like cancer that hasn't metastasized. It's an arbitrary term. I have severe lung involvement, but because my kidneys aren't involved I have "limited" Wegs.

Not everyone will develop more involvement. Kidney involvement is by no means a given. Dr Seo has said that if someone has Wegs for several years and still has no kidney involvement they are very unlikely to ever develop it. (Note: that refers to people who are being treated) He said 2 years ago--4th year post-dx--that he'd be shocked if my kidneys ever became involved. However, he still checks my kidney function monthly.

Dr Seo also refers to mild involvement as "Wegener's Lite." LOL