An infectious lung question

[me2]

:wink1:I'm hoping Mr Phil sees this question as I know he is facing simular circumstances. I have something that showed up on my lung on a CT and they are going to do a bronchoscopy to see if it is infection. I wait every day now for them to give me an appointment but it hasn't happened yet- it should be soon. They are holding off on my Rituxan until it is figured out.

What I am wondering is what the bronchoscopy is like and if they do find infection how do they decide what to do? They told me to take one double strength bactrim three times a week for now.
Does anyone have any pointers for me on this? They said the shadow on the film might also be from WG. I guess that is actually what I am hoping for. I've never hoped for WG damage before , its a funny idea huh?

[elephant]

Me2, what kind of symtoms are you having?

[LisaMarie]

ME2,
I have had 2 bronchs done and was basically awake for both.....depending on the way you are breathing and perfusing is wether they lightly twilight you or not....I understand wanting it to be WG because then you know what you are fighting...When I was hospitalized in September my bronch came back negative for infection but I went into resp failure and almosr died..they treated me with antifungals, antivirals and antibiotics...the antifugal seemed to be what made me do a turn around so now I take bactrim DS daily just ...part of the docs that it was WG and the other thought it was a fungal infection ...i had just finished a round of rituxan and started imuran.....I am going to Mayo in a few weeks so I will try to get some answers from them....I really do not want a wedge lung biopsy to see if WG is Definately in my lungs...so hopefully Mayo will have other ways to finds out the answers I want...i just know I am tried of wearing O2 and being tired and taking pred.....sorry for the rant...just know you are not alone....:rolleyes1:

[me2]

Aside from the wonderful panoply of other WG symptoms my specific lung symptoms have been a cough for a long time with stuff coming out at least once a day. I have been on Cytoxan for 6 months and have been taken off (and pred increased) until this can be figured out.
It has improved quite a bit now that I am on 40 mg prednisone but that doesn't really tell me anything. It does feel good to feel better. Of course it gives me more energy than I have had in a long time, that feels good too. I'm just trying not to think of the cost down the road too much of yet again coming down off the pred.
I have some shortness of breath and difficulty breathing. Along with this I have a lot of pain in the muscles around my throat. All the docs seem puzzeled by this but I can't help that. It hurts.
So my symptoms are not real bad - yet, but we all know how quickly things can go down hill. Thanks Lisa Marie for sharing your experience with me. I am afraid that my results are going to come back inconclusive too- I've just got that feeling. But, it helps to just take one day at time. Yesterday was a pretty good day. I hope today is Worldwide Good Day To Have WG Day - a holiday for all of us.

[elephant]

Me2, if your feeling better on 40 mg of prednisone then most likely I don't think its a infection. It is probably WG...that is my little opinion. Prednisone will bring down the inflammation, but the infection will remain. Are you seeing a WG specialist?

[me2]

Hi Elephant, Yes, I saw Dr Langford a couple of weeks ago and she is the one that found the 'shadow' on my CT. I am working with my Seattle pulmonary guys now and will be seeing a new WG doc. I kind of hoped that the improvement under pred also meant that it was WG and not infection - we shall see. I think they are being especially cautious because of how long I have been on Cytoxan and now am going to switch to Rituxan and further hammer on my immune system making me much more susceptable to infection.

[elephant]

Oh, yeah! I forgot you went to see her, hopefully your new doc can give you some good insight and find out whats going on. They always want to sample or cut something out to make sure! Keep us update!

[ArlaMo]

I'm having one on Friday - just a little nervous! I've never had any kind of sedation before. Dr. Langford was also the one who saw nodular opacities and ground glass opacities on my CT while in Cleveland two weeks ago. And we're also waiting on the results before changing from Cytoxan to Rituximab (been on Cytoxan since April.)

Do you mind sharing who your Seattle doc is? I've been going to a rheumy in Spokane, but I have not been too thrilled with him and am looking for another doc. I'm in Walla Walla - nobody local at all - so I'll have to travel to either Seattle or Portland.

[gwenllian111]

I woke up with terrible chest pain on fever on Sunday morning. I want to the ER, and a shadow was on the chest x ray and so i'm treated with pneumonia at the moment in hospital. I'm also waiting to have my chest CT tomorrow. Funny thing is, I have no cough. CRP is 278 though!

Funny world this WG.

[drz]

I woke up with terrible chest pain on fever on Sunday morning. I want to the ER, and a shadow was on the chest x ray and so i'm treated with pneumonia at the moment in hospital. I'm also waiting to have my chest CT tomorrow. Funny thing is, I have no cough. CRP is 278 though!

Funny world this WG.

Isn't that a very high number suggesting an infection or serious inflammation? Are they certain you have pneumonia? I was treated for pneumonia for over a week when I had bleeding in the lungs from Wegener's because they didn't know the difference. Hope you get correct treatment and that it helps you feel better soon!

[gwenllian111]

Well, the CT scan tomorrow should give more of a definative diagnosis I suppose.

The weird thing is that I have no cough, just chest pain, and not being able to take deep breaths etc or move comfortably. :-/

[pberggren1]

Mr. Phil here.

I have had my lung infection for quite some time now. I am still coughing up bloody mucus. I see the lung doc tomorrow to see what he thinks. My Wegs doc thinks that he will either want to do a bronchoscopy or a biopsy to see what is going on. I brought with me on CD a CXR that I had done this morning and a CT of chest that I had done just before Christmas. I have never had a bronch before, but I do know that I have trouble breathing still and even when I am able to cough up a bunch of mucus I still feel restriction in upper airways somewhere. I think it is in bronchial area with inflamation and mucus build up. I will keep you guys posted.

[Mel]

Me2, just to let you know I had the exact same situation in December. I started to feel unwell again and I went in for some tests. The doctor found that I had a raised CRP and ESR and he listened to my lungs. He heard me wheezing so he sent me for a chest xray. He called me back very soon after to tell me that he had found a white spot on one of the lungs in my xray. I had to go for a CT scan and they did a bronchoscopy. Around the same time, I ended up in the hospital for 2 days because I was flaring up. I had solumedrol by IV and that got me back on my feet. The doctors were planning on giving me rituxin but they still didn't know what was on my lungs so they were worried about giving it to me without knowing if I had an infection there. I ended up just staying on prednisone and methotrexate (they upped my doses) and I didn't have the rituxin. I went back to see the doctors last week. They told me that my blood results were very good and that my chest had completely cleared according to my xray (no white spot). They were certain then that I had a vascultiis spot (inflammation in my lung) rather than an infection. The doctor explained that with prednisone increase the spot would have gotten worse if it was an infection. He also said that everything came back negative from my bronchosopy for fungus and infection. I was so happy I could have cried! I hope it is the same for you! I hope this helped. Good luck.

[Sangye]

Gwenllian, please tell me they're checking you for blood clots in the lungs. A regular CT won't show it. They need to do a CT with contrast injected at high speed (aka pulmonary angiogram).

[gwenllian111]

Hi

I had a CT and they injected some dye in at the same time. They said that there is an area which has mucous/fluid etc in my left lower lung, which they think is pneumonia, but cannot rule out WG at the same time. I feel better now than upon admission, not on oxygen, and my CRP is going down again now.

I have no cough though, which I would expect either way! JUst so glad that the chest pain is easening (having said that I have no idea what mixture of pain relief i'm on altogether).

Just want to go home:(