Possible flare?

[rebekah]

Hi everyone! I'm so glad I found this group yesterday! I'm sorry I don't know where to post this, but I'm at the hospital right now and sifting through everything on my phone is a bit difficult. I'm 22 (a pre-med college student) and was diagnosed with Wegener's early January 2012. After battling with the horrible symptoms, I was relieved to finally have an answer as to what was causing everything... after so many doctors kept giving up I though I was becoming a hypochondriac. lol Anyways, I was on cytoxan for 6 months and started lowering my prednisone after that. I'm still on imuran and prednisone, down to 10mg now. Everything seemed to be getting better, and I started to feel somewhat normal and was able to better keep up with my classes at college. However, yesterday (Monday) morning around 5:00 am I woke up not feeling well and started coughing up blood. I called my doctor and she recommended I go to the hospital, although it's most likely a flare-up, just to be sure. On my last x-ray at the beginning of the month there were two calcified nodules in my lung so that may be the cause (I told the doctors at the hospital and they got a copy of the x-ray)? I got there and they ran some blood work, and after coughing up more blood they put me in an isolation room thinking I have TB, so I will be in this room until the results come back. I'm hoping they'll be negative, as I am taking an infectious diseases class this semester and just spent the past 2 weeks learning about TB. Later Monday, there was blood in my urine and the tests from earlier showed protein in my blood and urine. I just had a kidney transplant in December (thanks to Wegener's), but the doctors are saying my new kidney is fine and it's not being rejected/infected. I'm glad the kidney is fine and I'm not experiencing any of the extreme chest/abdominal pain I usually have, but I feel like the doctors are keeping me out of the loop and I hate not having all the information. Has anyone ever had any symptoms like this, have any suggestions, words of support, what have you. I hated sitting in bed for the 6 months on cytoxan, and this right now feels like torture.

[annekat]

Welcome to the group, Rebekah. You may find yourself knowing a lot more about Wegeners after being here for a few weeks.

Your symptoms, especially the coughing up of blood and the blood in urine, sound pretty alarming to me. I'm one of the LEAST expert on here, though, and hope others more knowledgeable will chime in soon.

One of the big concerns on here is whether people have access to true Wegener's specialists for their care, especially when faced with severe and alarming symptoms. Having had a kidney transplant due to Wegener's does indicate you may have had some pretty experienced doctors. But I'm curious whether you live somewhere near any of the vasculitis specialist centers and are able to get seen by the doctors there. Unlike me, who lives nowhere near any of them! A list of vasculitis specialists appears on the Vasculitis Foundation website.

In any case, I'm glad you found us and look forward to hearing more about your case and how you are doing!

[rebekah]

Hi Anne,

Thank you so much for the reply. Taking the time to go through the site I see there are a lot of stories, and even more information about Wegener's. I would sometimes cough up blood while I was on cytoxan, but since it had been nearly 7 months since I've stopped taking it (and hadn't experienced it since), I didn't hesitate calling my doctor that early in the morning. And I agree - all this blood is a bit scary. I'm getting blood transfusions to help with the blood loss. Nothing but the lung nodules are showing up in the scans so they are a little confused as to what's causing it, and since it's not showing in the scans I'm thinking it's not TB (but being pre-med) I know things don't always go by the book. I got the nodules biopsied earlier, but I don't know how long it takes for the results; since they're calcified there's only a small chance they're cancerous, but it could explain why I'm experiencing hemoptysis. The addition of the protein in my blood and urine makes things just that much more confusing. I'm just hoping the TB results come back so I can at least come out of the isolation room...

The kidney symptoms slipped by us and I found out my kidneys were failing fast, by the time it was detected it had already lost 90% function, but thankfully my best friend was a perfect match and she donated. And my current doctor has been great although she has never treated Wegener's before. She has been in constant contact with one who has and has been a huge help! It's her friend who happened to mention this and the blood work was done and I was diagnosed. I'm a college student and unfortunately couldn't afford to pick up and move elsewhere for treatment.

[drz]

I was first treated for pneumonia and then when the bleeding started I figured I had TB or cancer and that I was a goner but after a few weeks they finally got a clue it was Wegs. I almost lost my kidneys and still remember the day a doctor came in to tell me I was headed for dialysis soon. Fortunately he returned in a few minutes all red faced and apologized for having read the wrong chart. With aggressive treatment my kidneys improved to almost half of normal function and my lungs to about 60 %. Consultation with a Weg expert is crucial so glad to hear that is happening for you. Best wishes for better health.

[Jaha]

Welcome to the forum. You have been thru a very bad case of Wegs and really need to be transferred to a hospital with a weg's specialist. I don't mean to scare you even more but, I had caviated nodules in my lungs and they thought TB and infectious diseases, but it was wegeners. I was very sick and didn't get the correct dx or treatment for 8 months, and it did alot of damage to my lungs.The coughing up of blood and protein issues need treated right away. Be very forceful with your drs and make sure that they know what they can handle. By the way imuran did not hold me from getting flares and doesn't work for everyone.My prayers are with you.
Jana

[Dirty Don]

Welcome Rebekah, glad you found us so quickly...since you have the time in isolation! Yikes! As you'll find out, there are lots of caring people, experienced and smart, on here. My first treatments (albeit I was in ICU and they didn't know much about WG where I was admitted) were based on the coughing up of blood, seeming pneumonitis in the lungs, and chunks out the nose! Mayo ended up doing the pathology of a lung biopsy, and nailed it, so now they treat me. Again, yikes! Sounds a bit like you're flaring with the blood and protein. Please make sure your docs are consulting with WG docs somewhere...see Vasculitis Foundation's site for free consultations if your docs don't know where to go. It may be that you're becoming eligible for the 'next step' in treatment, which I assume would be Rituxan. Then again, maybe just an increase in pred could help. It's interesting that I thought I was a hypochondriac for years before being diagnosed...sheesh! Glad and sorry you're young...glad cuz you can fight this much better, sorry cuz you're stuck with it...sighs. Hang tough, it's a long road with lots of ups and downs...keep asking questions not only on here but to your docs...and silence from them is NOT acceptable!!! And remember that as you progress thru med school...half of what you do is 'relating' to the patients - it helps so much to be told the truth...best of luck!

[rebekah]

Thanks guys! I was diagnosed with Wegener's and already went through the the treatment with cytoxan and everything and am now on imuran and prednisone. So could this just be a horrible relapse/flare and I need to start treatment again (cytoxan, etc), and it's not TB or something else? From what I've learned over the past year of dealing with and researching Wegener's this seems like that's what it most likely is. The doctors are saying that they have to wait for the TB results before they move forward. They are worried about treating me for something and then I get worse... I feel like I'm on a 'House' episode right now.

[marylz]

Hi rebekah. I was just diagnosed about a month ago and they ran TB test on me as well because they couldn't definitively say it was GPA due to the fact that they couldn't do biopsy because I am on long-term blood thinners. The test came back inconclusive and they hemmed and hawed for a while and then decided that since I wasn't in any place risky and it was unlikely that i had come into contact with TB that the standard treatment would be just 1 more medicine for over a year added to the treatment for the GPA and decided not to. I hope you are feeling better and get out of isolation soon!
I too heard about GPA in the hospital and tried to get info about it on my phone, but the connection was so slow...it was agonizing! Good luck.

[mishb]

Hi Rebekah,
Welcome to the group

Like Anne, I cannot give any information about the lungs being affected but the others on here have already offered some excellent advice.
To me, it sounds like you are having a massive Wegs flare and need to be treated accordingly.
I don't even have lung involvement and I was also tested for TB, Hep C and HIV prior to treatment.

I hope things come good soon and you get out of isolation and out of hospital.

Maybe when you finish your pre-med course, you can specialise in Vasculitis and AI diseases and become one of those experts that everyone on here talks about

[rebekah]

Thanks so much for all of the responses and support! I was cleared of TB this morning and was taken out of isolation. I am so glad to finally be out, but I am still coughing up blood. I definitely think this is just a horrible flare. My Prednisone was increased and that seems to be helping with the hemoptysis. I can't wait to be out of here soon (hopefully tomorrow?), so I can get back to classes.

And Michelle, I like your thinking - I was actually set on specializing in pediatrics and international medicine, but after being diagnosed I am pretty sure I'm going to specialize vasculitis/auto-immune diseases now. Wegener's such a tricky disease, and we need more specialists for us!