Infection?

[Brooke]

Hi,

I felt a little wheezy on Friday night so I did an albuterol neb, I still felt a little wheezy and of course that makes me start to panic. I did not have a fever or anything. I called my dad "a physician" and he told me to start 40mg steroids (and taper down over the next few days) and take a xanex (anxiety medicine), He said if I was short of breath I should go in but if I felt wheezy, to do a neb and start the steroid. I did that and felt better by the next day, no wheezing. I think I panic myself quite a bit, I'm always scared about Wegener's.
Anyways, yesterday I started to taste infection and by this morning I am getting a lot of green gunk out of my sinus rinse and also when I cough. I called my doc here this morning and he told me to do 40mg for 5 days then 20 mg for 5 days, then 10 for 5 days. I also called my doc at Mayo just so she knows what is going on, I am waiting to hear back.
I was out and about a lot this weekend, at the mall, at a restaurant, at the grocery store, and visiting my very sick grandma in the hospital. I don't know if I can blame it all on that or not since I started to feel a little sick before all of that.
I just feel like lately (maybe it's this time of year) I start an antibiotic and then after I have been off of it for about a week, I start with the green gunk again.
I should also mention that my 4 yr old has had diarreha the past couple of days, there always seems to be something going around. I live in South Dakota, brrr...!!!
Anyone else like this?

[marta]

Oh Brooke,

I can so relate. This is my first fall with Wegener's but I too feel the same thing. I had to keep my four year old out of pre-school all last week because she was HEALTHY. Parent's are bringing their obviuosly sick, hacky kids there and it was driving me nuts. She too had a stomach thing a couple weeks ago that my mom ended up catching when she was here to help out when I was in the hospital - it wasn't a pretty picture to say the least. There's so much going around, and our thing (WG) is so much like what goes around when it's in the early stages that I am always questioning what's the cause. I hate that feeling of uncertainty. I think it's so good to be vigilant though, because I think had I caught this early enough when I first felt the symptoms, I would definitely not be where I am today. So do what they say and get on it pronto.
Take care, rest and beat it down with steroids and whatever else it takes before the brush fire turns into a forest fire.

[Jack]

Although I take Bactrim on a permanent basis, I have to switch to something like Amoxycillin quite often due to chest infections. As you say, sometimes it is only a couple of weeks without it and I have to try again because the infection is back. My lungs and like a breeding ground for bugs!

[Sangye]

It's so much harder for you guys with little kids! I avoid a lot of infections by living alone, which I don't mind.

Dr Seo has said that even a simple cold can take many weeks to clear up, so I imagine the same might be true of bacterial infections requiring antibiotics.

Brooke, you might want to consult with a psychiatrist about using something other than xanax to control anxiety on a regular basis. A friend who's a therapist told me xanax is highly addictive and can actually worsen anxiety. There are other meds that are non-addictive and do a good job of controlling anxiety. Therapy has helped me a lot with anxiety. Remembering that pred is contributing to it helps me, too.

[Brooke]

You guys make me feel so much better already!!! Just knowing I'm not alone is a good feeling, thanks for the advice and for sharing your own stories.
Sangye - I have only taken Xanex 2 times . I definately do not want to get hooked on that at all. I think maybe next time I will try some benedryl to make me sleepy, that is what my primary doc told me to take before. I agree, knowing that pred can makes us like that does help me too.

[Brooke]

Oh yeah, I don't get anxiety that often to where it scares me so bad I need to take something. I think I took one a couple of months ago and then I took one on Friday night. I can usally calm myself down or distract myself, but the wheeze scared me. It is always at night too if I get anxiety.

[Sangye]

It's terrifying to have trouble breathing. When my lungs were in their worst shape I was also on the highest doses of pred-- a very anxiety-inducing combo! I had a great therapist who taught me ways to distract myself and calm myself down. I'm glad you can do that too, Brooke. :smile1:

[Brooke]

Anxiety is no fun! That would be very scary Sangye! Glad we can both distract ourselves!! I like to watch HGTV or even calling my mom who lives about 5 minutes away! She helps me the most with anxiety!

[elephant]

Brooke , hope your starting to feel better. YOU are not alone. My hubby and I are getting over colds/coughs and now my son and daughter are getting it....it doesn't stop.

[misskay]

Pretty much the same thing here. Hubby and I had to go out of town for a week, we just got back last Monday night. Started to feel bad the last few days of the trip (extreme fatigue, muscle pain, horrible backache, more sinus problems than usual, slight cough), got worse and worse. Saw my Rhumey last Tues and he upped my Pred back to 10mg from 7.5, gave me a steroid shot to boost it, and put me on Flexeril for the back. Unsure if I've injured it or just really tight from the long trip and lugging suitcases, etc.

Over the last couple of days my chest started to feel pretty tight and I got the dry hacking cough that was my original symptom with the cavity pneumonia that led to dx. Called my Pulmy this morning, and he got me in right away. He has me taking Bactrim DS twice a day for the next 2 weeks instead of my normal M-W-F schedule, as well as getting another steroid shot. He said that todays chest x-ray looks ok, but with the traveling in a rental car and staying in hotels... it's the "kiss of death" for immuno-suppresed folks. He thinks I've picked something up during the trip. If I'm not feeling better by Monday he wants me in again :/

I almost didn't call him this morning, figuring I'd just gotten the 'crud', but also didn't like the idea of going into a long holiday weekend and allowing something to smolder and worsen... or even worse ending up at the ER trying to explain to an over-worked, over-stressed ER doc what was going on.

Hope everyone else is feeling better :)

[elephant]

Misskay you did the right thing and so glad you called your doctor. Don't want to mess around with chest problems esp mentions chest feeling tight.

[JanW]

Brooke -- the only other thing I would be concerned about is your stenosis, which is something that many here might not be factoring into your 'wheezy' state. How often do you have the state of your windpipe checked. As you know, and I know, things can go from ok to bad in that area pretty quickly.

[Brooke]

Misskay - I agree it was the right thing to do by calling your doc. Better to get ahead of it. Hope you get to feeling better.
Jan - I had it checked during a bronchoscopy in Sept of this year, it has not changed at all since my first one that I have had over a year ago. I think my actual windpipe is okay, I think it is the bronchial tubes that are scarred and narrowed a bit. The docs didn't seemed too concerned about my actual windpipe as far as breathing goes. Thanks for checking with me on that. I am also on prilosec for acid reflux, which I may have since I was laying down when it happend.

[Sangye]

Misskay, back pain in a Weggie always raises a red flag. If it's the upper back it could indicate a lung problem. If it's the mid-back it could be kidneys. I hope your doc did a urinalysis just to be sure. I'm glad he's on it and is taking your symptoms seriously. I don't know how effective a high-dose steroid shot is if it's Wegs, though. That's not a typical treatment unless you're in adrenal crisis (which you aren't).

[misskay]

We did complete blood and urine last Tuesday, not all results are in yet. He's even checking vitamin levels because I was feeling better, then a sudden crash toward the end of our trip. The pain is mid-back... and while out of town my urine got dark, but that was mainly my own fault... not enough water intake due to not wanting to stop every 15 minutes. I also could have strained it or just worked some lazy muscles harder than normal while riding, and schlepping luggage.

I guess his (Rhumy) thinking behind the steroid shot Tuesday was to bring me quickly back up to a level where the joint pain would lessen, which it did by the next day. Today (Pulmy) it was because I still have holes in my lungs from the cavity pnuemonia, and the steroid shots seem to really speed up the healing. The holes were discovered in mid-May which is why I was hospitalized the first time, and have shrunk to about 1/2 size so far. When it comes to my lungs... he's pretty aggressive.

[elephant]

The steriods will bring down the inflammation, not heal faster. That was a concern when I went in for lung surgery....I was on 40 of prednsione and after surgery they had to increase it to 60 because of my WG being so active along with taking other immunuosuppresants. The healing took longer almost a year because of the prednisone and other immunosupressants.

[coffeelover]

It does appear to be that time of year when the "bugs" strike us! Anxiety comes for me when I start to do too much. It sounds like Brooke is taking her medicine seriously and carefully. Good job! I tend to "overdo" and then I start to feel anxious. I have learned to take something to help me sleep and start my next day slower.
Also, take it from a stenosis patient....when you cant breathe...you have anxiety. I am not sure any amount of medicine can cure that! Brooke...good job on taking care of yourself.

[Brooke]

I called the dr this morning, the green doesn't seem to be clearing up and it is harder to breathe in the mornings. After I take all my medicine and do a neb, I am feeling better throughout the day. Well the pulmonologist wanted to do bronch today, to "clean" it out in there and also to take a culture. I told him I was nervous about doing that because I am having one done at Mayo Clinic 2 weeks from today. He said he is fine with me doing another sputum culture instead. He is thinking since the antibiotics aren't clearing it up, it might be MRSA again and wants to start me on Zyvox again but since it is so expensive he wants to make sure thats what it is, therefore wanting to do bronch to get culture. He called Infectious Disease and they are ok with putting me back on Zyvox, I did a sputum culture and should hear back by Friday if it is MRSA. My blood work and urine work from the other day all look good so far.

[elephant]

You want to find out what it is. Doing a bronch is very expensive too. I know it's prudent to get a culture first and then they put you on Zyvox for a few days until they find out the cultures....esp if you aren't breathing that great. You can end up septic.

[Sangye]

Boy, that's a tough call. A bronch can cause infection or push an existing URI into the lungs since it isn't a sterile procedure. But it would give you a good sample. Are you going to start on Zyvox today then?

[Brooke]

Infectious Disease wants me to finish Zyvox and Omnicef. Sputum culture came back as haemophilus influenza. Infectious Disease wanted to put me on Augmentin for that but I got a little itchy from Augmentin last time and I was allergic to Penicillin as a kid. So they decided since I was starting to feel better to finish the Zyvox and Omnicef.
I don't know if I am actually allergic to Augmentin or not, I got a new laundry soap around that time too so it could have been that but they didn't want to chance it.

[elephant]

Hope you start to feel better Brooke. How long do they have you on zyvox and Omnicef?

[Brooke]

Thanks, I believe it is 2 weeks for both.

[elephant]

That's not bad at all. The Zyvox is really strong and has many side effects, so report anything that is different to your doctor....esp joint and muschle pain.

[Brooke]

Thanks Elephant, I will watch for that.

[Brooke]

On Friday I had to do some blood work to test some levels while being on Zyvox. Well my WBC was way up and so was ANC. I am just tapering prednisone so I thought maybe that was why. I told ID doctor that I have been having some diareha, that too I contributed to being on 3 antibiotics. Zyvox, Bactrim, and Omnicef. Well he thought I might have CDIFF and put me on another antibiotic for that! I had to bring in a stool sample today and results of that will be back Monday, I also have to check my blood again on Monday. I feel ok just really wanting to catch a break. Sick of being on so many antibiotics...... thanks

[Sangye]

Once my docs thought I had C Diff, too. I was already hospitalized and they only did 1 or 2 IVs of the antibiotic (vancomycin I think) before determining it wasn't C Diff. They stopped the IV immediately. Vanco is reserved for antibiotic-resistant bacteria and they never want to use it unless they have to.

[Brooke]

I think I have had the IV Vancmycin before too while in the hospital. This time they gave me a prescription called Flagyl.

[Sangye]

Flagyl...eech. I took that a lot in Africa for giardia. Rough drug. I hope you're holding up okay with all these extra meds, Brooke. I'm sorry you have to be on all of them! :sad:

[elephant]

Being on all those antibiotics...make sure they are checking your kidneyliver function. Hope you can get off them soon.

[Brooke]

Yeah, I felt like my heart was beating hard last night and tummy ache. I have a feeling its the Flagyl. I didn't take it today, I know that may not be the best idea. My dad does not think I even have cdiff, he thinks its my steroids making my blood work goofy. I will find out tomorrow with the stool sample. I am just nervous to take that flagyl again, I feel like anxiety and headache and tummy ache.

[elephant]

I wouldn't take it either Brooke. I know the medicines can do that. Whenever I am on those meds Cipro, levaquin, they make me nervous and my heart rate is up. So I try to avoid them. Doctors don't want you on it if your heart rate goes up too high anyways.