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!

[pberggren1]

Sounds like a flare to me. So glad you found us Rebekah. Ask your doctor to get you on Rituximab ASAP. That has helped me and many others. I'm very happy to hear you plan on finishing med school and specializing in Vasculitis. Do you know what sub specialty you might go into?

[rebekah]

Thanks! I'll be sure to tell my doctor about Rituximab... I think she was going to get me back on Cytoxan (not positive though), but I'll definitely have her look into this and consult with the other doctor (who has treated Wegener's before); I'm willing to do anything to help feel better. And from what I've read from many people on here it seems to have helped. :)
This might have caused me to stray a bit from starting med school, but I'd rather take some time off before starting to make sure my health is back... I'm just hoping that this little bump in the road allows me to still graduate in May... I'm so ready to be done with undergrad already!

[rebekah]

So glad to finally hear some good news. The doctors are saying if I can go the night without coughing up blood, I will start the Rituxan IV treatment tomorrow and then I can finally go home! :) I did some research on Rituxan and I see it can take about 6 hours for the treatment, which I don't mind since I can get some studying done, but can anyone who's been on this before offer input as to how often I will have to go in to get the treatment? It looks like the side effects aren't as bad as Cytoxan, but I liked that it was available as a pill for me to take (which is what I did). I talked to my doctor over the phone and discussed Rituxan, but didn't get all of the details... I'm sure I'll get them tomorrow when she stops by but I never was very patient. lol

[drz]

So glad to finally hear some good news. The doctors are saying if I can go the night without coughing up blood, I will start the Rituxan IV treatment tomorrow and then I can finally go home! :) I did some research on Rituxan and I see it can take about 6 hours for the treatment, which I don't mind since I can get some studying done, but can anyone who's been on this before offer input as to how often I will have to go in to get the treatment? It looks like the side effects aren't as bad as Cytoxan, but I liked that it was available as a pill for me to take (which is what I did). I talked to my doctor over the phone and discussed Rituxan, but didn't get all of the details... I'm sure I'll get them tomorrow when she stops by but I never was very patient. lol

My initial treatment with RTX was two sessions and that seems fairly typical but some get four sessions for their RTX trreatment. As to how often, that varies greatly. I only had the initial session, then was switched to CTX, then to generic Imuran.

[Psyborg]

So glad to finally hear some good news. The doctors are saying if I can go the night without coughing up blood, I will start the Rituxan IV treatment tomorrow and then I can finally go home! :) I did some research on Rituxan and I see it can take about 6 hours for the treatment, which I don't mind since I can get some studying done, but can anyone who's been on this before offer input as to how often I will have to go in to get the treatment? It looks like the side effects aren't as bad as Cytoxan, but I liked that it was available as a pill for me to take (which is what I did). I talked to my doctor over the phone and discussed Rituxan, but didn't get all of the details... I'm sure I'll get them tomorrow when she stops by but I never was very patient. lol

For most people RTX is considerably easier to tolerate than CTX, though some people don't tolerate it well. If it does work well you should have either 2 or 4 infusions and be in the clear for a while. Possibly a good while.

[rebekah]

It's been a very long four days, but I finally made it home a few minutes ago. I survived my first infusion of RTX, and I have 3 more to go; I'll go again next week for my next one. I did have the chills and some nausea during the infusion, so they gave me warm blankets to help. I'm glad they gave me some Benadryl beforehand, I ended up taking a nap and the first half flew by! So glad to hopefully be on my way to feeling better.

[pberggren1]

This is very good to hear.

[TommyG]

I had less side effects with RTX than CTX. More importantly It finally stopped the active disease in my lungs, ears and sinuses, which CTX did not. I do hope RTX works well for you. Make sure you put your health first. I took 2 years off at my college, now I'm back working full time. Make sure you tell your professors what going on. Most of us would be very understanding of your situation. Best wishes,

tommyg

[Jaha]

I'm glad that you are getting the right tx and that you are feeling better. If you have anymore reactions to rtx, they had me take tylenol and benadryl every 4 hours for a 24 hour period. I had my 1st one last year and do the 2 tx protocol. Great to hear you are at home
Jana

[rebekah]

Thanks everyone! I seem to be doing okay with RTX, though it's hard to tell since it's only been one day. I am nauseous, but I know this is due to the prednisone and RTX (this is a symptom I've grown used to while on treatment), thankfully my anti-nausea medicine is helping to keep it under control. But I also have a metallic taste in my mouth? Has anyone here heard of this as a side effect? I haven't read anything about it online... and now that I'm on my laptop I've been reading a little bit more of the discussions on here. I have a doctor's appointment Monday morning so I will discuss this with her if I still have it then. Thanks for the tip on taking Benadryl and Tylenol, Jana! I always keep those in the apartment and took it after reading your post. And I agree with taking some time off, Tommy, I think after I graduate in May if I get accepted into med school for this coming fall I'm going to take the year off to get my health back on track, because I know med school will bring a lot more stress than I have now, and I don't need another flare in the middle of a semester during med school.

[Jaha]

Rebekah,

I did have that metallic taste in my mouth, early on. I think it was from the preds and different meds like antibotics they had me on.
Jana

[Marci]

I know some chemo drugs will give you a metallic taste. My daughter had that from some of her chemo.

[drz]

I remember having strange taste for weeks after my initial diagnosis and treatments for Wegs. It took several weeks before I could enjoy eating again after I woke up from my induced coma and intubation.

[annekat]

Hmm, I don't remember that happening, the metallic taste. High dose pred made everything taste pretty good to me. Now, though, I'm feeling there may be a decline in my sense of taste, to go along with my loss of ability to smell, which I've had for quite a while...

[rebekah]

I'm glad to hear it's not just me who's experienced this side effect... I hate it. I feel like I want to eat to try to get the metallic taste out of my mouth, but then it just makes everything I eat taste horrible. I usually end up just eating everything anyways since I have no self control when it comes to food.

[Psyborg]

On CTX and MTX I frequently was waking up with a coppery taste in my mouth. I actually was concerned it was blood for a while, but it never seemed to include any blood. Since I've gone to immuran and RTX I haven't had that experience.

[annekat]

Well! After this discussion of metallic taste, I started noticing it last night while relaxing. It is not an unfamiliar sensation, so I must have noticed it before. Perhaps I thought it was metal fillings in my mouth or something of that nature... though my metal fillings have all been replaced with non-metal except for a gold crown. I'm on MTX. I think I taste it a little right now. In general, my sense of taste has gone downhill, things just don't taste as good, period. My sense of smell went away some time ago.

[rebekah]

Phew! Glad (well, not that happy) to hear I'm not the only one experiencing this... it's probably the only side effect I cannot stand. After talking with my doctor yesterday I still decided to stick with RTX rather than switch to Cytoxan. I figured I would give this a shot... and from what I've read on here it's seems to have really helped a lot of people. Here's to hoping this metallic taste goes away soon for us Anne. :)

My ears seem to be affected somehow too? I noticed it this afternoon in one of my classes. It's not exactly ringing, it's more of a pain... I don't know how to describe it... maybe I'm going deaf or maybe it's like the 'medical student's disease' where they start to experience the symptoms they're studying. lol I definitely hope it's the latter.

[annekat]

Your first ear symptoms with WG? Many of us have them. Your eustachian tubes can become swollen shut, or the reverse, they can become stuck in the open position; either way, it messes up the balance of air pressure between your outer and middle ear, on either side of the drum which can cause painful pressure, fluid buildup, and tinnitus, can lead to ear infections, hearing loss, etc. I have more understanding of the blocked tubes than the open ("fatuous") ones, since mine are apparently blocked and perhaps permanently, meaning my eardrums are caved in and don't vibrate properly, so I can't hear and need hearing aids. (Definite layman's explanation, could be inaccurate.) But there are those with ear pains and hearing loss who regain normal ear and hearing function or for whom the pain is sporadic and doesn't lead to much of anything. Yes, could be connected with a flare, though.

[rebekah]

Thanks for the info, Anne. I'm going to keep an eye on my symptoms and make an appointment with the ent doctor. I've always said I could go without my other senses, but being a musician (not professionally, though I wish) I couldn't go without hearing. I'm hoping it's nothing major, but it's always better to be safe than sorry.