Hi From Oz

[mishb]

Hasn't prednisolone taken the pain away for you Mark

I think it as 2 0r 3 days after I started on pred, that I felt the most comfortable.

[Birdie]

Ok so had repeat chest ct...nodules have increased in size over 2 months so having a bronoscopy and biopsy to confirm. Immunologist is more certain its Wegners now . Pain in sinus has increased too...wish something would take pain away

Mark, the broken record returns... suppose I could be supportive, tell you it'll all be OK, pat on the head, etc... the real issue here is to be pushy, don't let time slip by waiting for doctors appointments and tests, force the time issue at every step. That's the best advice anyone can give you, it's the most critical until you're accurately diagnosed and start treatment, regardless of the diagnosis. It's more critical if it's Wegener's than if many other possibilities. Treatment for Wegener's is effective but needs to start as soon as possible to stop additional damage.

Go kick some health care ass.

[me2]

I agree with Birdie. I have suffered many times because of waiting for doctors to do their job, expecting them to do their job. Expecting them to believe me when I told them once clearly that I was suffering and in pain. Well, reality is they respond to pressure and complaints as much as to the requirements of practicing good medicine.

One time I was told that I could not be seen for two weeks. I was suffering horribly and knew that treatment was the only thing that would address it.
I went to the doctors office without an appointment and sat and waited to be seen. I told them I would just wait there until someone could see me. If not today then tomorrow- waiting two weeks was not an option. I was seen that day and given proper treatment. My suffering was not really a problem to that doctor- my sitting in his waiting room was.

Of course there are things you can do to ease your suffering but number one is diagnosis. Quickly followed by treatment. This will get you back in good shape.

[Birdie]

I agree with Birdie. I have suffered many times because of waiting for doctors to do their job, expecting them to do their job. Expecting them to believe me when I told them once clearly that I was suffering and in pain. Well, reality is they respond to pressure and complaints as much as to the requirements of practicing good medicine.

One time I was told that I could not be seen for two weeks. I was suffering horribly and knew that treatment was the only thing that would address it.
I went to the doctors office without an appointment and sat and waited to be seen. I told them I would just wait there until someone could see me. If not today then tomorrow- waiting two weeks was not an option. I was seen that day and given proper treatment. My suffering was not really a problem to that doctor- my sitting in his waiting room was.

Of course there are things you can do to ease your suffering but number one is diagnosis. Quickly followed by treatment. This will get you back in good shape.

Welcome to the choir me2.

[Lilly]

Hi Mark, welcome, sorry on the terms you are here, but you will get top notch info. from people here! Personally, it sounds like wegeners. Wegeners can be so different in each individual. Same area of problems, but different ways of acting....like yours seeming to be on one side. I was diagnosed 25yrs ago. 4 specialist doctors were all consulting together, because they like to have 3 positive symptoms before they diagnose. I was sick with sinus infections, ear infections, cough, that nothing would help, for a YEAR! By the time I could not walk from flaring joints and was in so much pain, some damage had been done. BUT, they only got a biopsy of my nose, and a needle biopsy of my lung. They decided against messing with my kidneys, because I was not having any issues with them. I have "limited Wegeners" which is very low kidney involvement. So, if you could be diagnosed NOW, it will save your body a lot of damage. Maybe the doctor is taking you down from prednisone to see if you start showing signs (like positive ANKA) when lowering the dose. Best Wishes, Prayers and Blessings, .....

[Mark76]

Lilly...i spoke with immunologist today...yep you are spot on. He wanted to reduce pred for those exact reasons. He suspects I have limited Wegners too. Biopsy scheduled for tomorrow apparently fairly straight forward. The only thing immunologist has wondered if not wegners is other signs and symptoms, neg anca and nodule size increase from 1.1cm to 3cm for largest. I have 4. He said normally that sort of increase is a result of an infection not Wegener's?? I also found it odd no further nodules just increase in size. He said the key will be biopsy to determine if weg or infection. So finally after pushing them (thanks birdie) theyre moving into action.

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[Birdie]

He said normally that sort of increase is a result of an infection not Wegener's??

Mine did the same thing and then biopsy result showed Wegs granuloma. Lets hope your doc is right.

[Lilly]

Hi Mark, glad things are moving on. I personally feel that the way your lungs are acting could still be wegeners. Its just such a crazy unpredictable dz. Nothing can really be "certain" or "exactly normal for wegeners"......I'm glad you are getting bx of lung tumor. I had a needle bx of mine. That's how they ended up diagnosing me. Nose and lung. All my tumors shrunk up to size of little rasins on the Cytoxan treatment given when first diag. They had to be very aggressive, I was pretty bad off. But my lungs have always had one granuloma tumor in my left upper lobe, has never changed. Never gotten bigger or smaller. It actually aches a little sometimes, but it never changes. So that's why I say, you just never know! Doctors have a hard time! I wouldn't want to be in their shoes........I am thinking about you, and ill be checking in to your progress. Take care!

[Mark76]

So with treatment how quickly do you typically see an improvement in signs and symptoms. My sinuses are the main offender?

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[me2]

My sinus symptoms started to improve the first day.