Please help.. what do you think?

[Aylasnan]

How likely is it that I have Wegener's disease? After coughing up blood for 2 months I've just found out I have nodules on both lungs through CT scans. The nodules looked large 2-3 cm and white to me. I can tell from the blood tests Doctor ran he suspects this disease. Awaiting results and a biopsy. I have a 3 year history of year round "non allergic rhinitis". Each year being awful from Feb to Sept mainly due to horrid cough and loss of voice in July and August. I have noticed multiple hard lumps under the skin all over my body. I have had sore red eyes for years and have joint pain. Still coughing up blood and would do anything for a nights sleep. Have random pains all over body that come and go. Would really appreciate your thoughts..

[Debbie C]

SURE sounds like wgs to me. First thing ( maybe its just me ) but if I started coughing up blood , I would be at the e.r. in about 10 minutes. Why are you waiting ???? I also have lung involvement and had several nodules, a couple about the same size. Your dr., if he has any knowledge of wg can find out a lot from the blood tests. The sed rate and crp as well as your urine should be checked ( for your kidneys ) but you can have the results the next day so if I were you ,I would go get a copy of the bloodwork. I get mine done at the hosp. so I have access to them 24/7,but if the dr. did it you may have to wait until Monday, unless you get your butt to the er ,which I think you should do since this has been going on for so long. The dr should have cked your Anca in your blood but that isn't a for sure test. Mine kept coming back neg. but my biopsy was positive. The aches and pains and red eyes are also symtems of wg, I personally have never had lumps under my skin, just a rash, but that doesn't mean that anything,since this does effect everyone different. I don't know where you live but I URGE you to get an expert in this field, since you can go downhill very quickly with this if gone untreated which it sounds like you are. You should have a reumy, and ent and also a pulmy for starters checking you out. Aylanan, I honestly think the best place for you NOW is in the hosp. where you can get cked by all this drs now instead of having to wait for appts and they can get you started on some much needed meds. Please keep us posted.

[Aylasnan]

Thank you Debra. I'm in the UK. I'm sorry I didn't make it clear, the doctor who ran the blood tests and who is arranging the biopsy is the lead respiratory doctor at the hospital. He ran ANCA and ANA tests as well as a heap of others. The reason I didn't go to the doctors early was that every year during July and August I lose my voice due to "allergies" and I was sure this was something to do with a sore throat etc. I had an appointment with the allergist coming up so I waited to ask them. They sent me straight to the GP, who referred me to the chest clinic at the hospital. I am not sure if the hospital would give me the blood test results but I will give it a go now.

[Dirty Don]

Welcome Ayla, sorry you HAD to find us, but you're at the right place now for info & understanding. Without being medical, yes, you have WG or some form of an AI at the least. I have rhinitis also, bled thru nose & coughing, had the rashes, roving pains...and I 'toughed' it all out until one nite I simply dropped and ended up in ICU & hospital for 17 days. Get this addressed asap. GP doesn't wait for docs & patients to agree - it keeps attacking until you're under a good protocol of drugs, doc appts, and your persistence is UP! Best to you...get the drugs in your body NOW!

[Aylasnan]

Thank you Don Side effects of the meds sound awful. Do you actually feel any better once medicated?

[Aylasnan]

Also what does AI stand for please?

[Birdie]

Aylasnan,

You asked for advice and it's the easiest advice I've ever been asked to provide.

Listen to Debra. She nailed it.

You don't know what's wrong and you HAVE TO FIND OUT as soon as possible.

Oh, and that doesn't mean you should panic. Don't panic. Think of a fire in a movie theater. Nobody panics and everybody walks out unharmed. Panic causes a different outcome. But you can't just sit there for years waiting for the end of the movie.

Best to you,
Gary

[Aylasnan]

Thank you Gary

[Debbie C]

Aylasnan, AI stands for an Auto-immune disease in which the body is fighting against itself. Yes all meds have side effects,many more than others BUT if you are not on something,at least prednisone, to help with the inflammation and also the joint pain you are only going to get worse. They usually start you out with that and also ctx ( cytoxon ) SP ? (you would think I would know after all this time ! ) You will see that prednisone is a necessary evil,it will make you feel better and horrible at the same time. There are many people on here from the UK and I am sure they will chime in soon. Please take care and do not wait much longer to get some answers and some meds

[Birdie]

Thank you Gary

No need to thank me, just get help with the issues.

To be more precise than telling you to listen to Debra...

If you have Wegeners Granulomatosis (WG), also called Granulomatosis with Polyangitis (GPA), it can very quickly cause irreversible organ damage. Your symptoms sound very Weggie but could be something similar... Whatever is causing the problems, you need to get treated for it RIGHT NOW. Kick your doctors in the bum and get it going.

Coughing up blood is not a good thing... EVER! It's very common for WG to smolder waiting for someone to yell "FIRE" ( theater reference ) while damage is being done slowly... but then with no warning, it escalates quickly. Many of us here have been in exactly your situation and the replies you get will all be the same: DON'T WAIT ANOTHER SECOND! That's me... yelling fire... The rest of us are all near the exit headed for the coffee shop. Please join us.

To answer you concern about medication. Yes, the side effects are awful, no way to gloss over that one. At first a high dose of prednisone is like nothing you can imagine, feels great, massive energy and many WG symptoms go away immediately (20 minutes)... It pumps up your metabolism so high you don't have to climb mountains you just jump over them. It doesn't last long, days or weeks, depends on your body and the dose. Other medications (prednisone is only one part of most treatment options) also have nasty side effects. The treatment is the method by which you calmly walk out of the burning theater.