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Chadwyck
06-13-2012, 07:08 AM
Normally I don't get a lot of coughing going on but lately it's been a problem. Yesterday I coughed up a little bit of blood before coming into work. Is this normal with Wegs? I'm currently at work now but the good thing is they're very accommodating now that I have a confirmed diagnosis in place. I thought my hip replacement from the damage from prednisone was the end of it all and now it looks like it's only the beginning. Next week is my 40th birthday and what I want for my birthday is for my body to leave me alone! LOL Any suggestions what to do about this?

Dirty Don
06-13-2012, 07:13 AM
LOL, don't know what to do about your body leaving you alone, but I empathize some days for sure! I've been thru and still have the WG cough...for me, it seems to evolve...was very disruptive and easily agitated at first, now has evolved to a lesser state, but, nonetheless, is still there. Seems to 'hack' in different ways each time it comes back. Coughing up blood indicates a still active WG...mine was blood from lungs and stringy blood from the nose (I know I know...don't think about it!), as the mtx and the pred have done their jobs and the WG is in medical remission, I no longer have the blood symptoms, but am extremely aware of them each time I cough or blow my nose...always on guard as it was one of my more obvious symptoms...sheesh!

Chadwyck
06-13-2012, 07:29 AM
So you can be in remission and getting the same issues prior to diagnosis and treatment? How can I tell if I relapsed or in remission?? Last time I complained to my specialist was back in February of this year. She did say, "You're not flaring from what I've gathered and you still seem to be in remission!" When is a flare a real flare compared to when my body's playing dirty tricks on me? At first I thought her answer indicated that she didn't believe a word I was saying.

Al
06-13-2012, 10:13 AM
Question for you, Chadwyck: Is the blood bright red (meaning fresh), or kind of rusty (meaning old blood)? In both cases, I would call your doctor immediately, but even faster if it is fresh blood. Maybe go straight to the emergency entrance. Sorry about your birthday wishes, but pulmonary hemorrhaging is most definitely not a good sign, and it can get out of control very fast. It also may mean that your kidneys are also under attack, though the evidence for this is harder to spot without blood tests. I think this is pretty important.

Al

drz
06-13-2012, 11:47 AM
Normally I don't get a lot of coughing going on but lately it's been a problem. Yesterday I coughed up a little bit of blood before coming into work. Is this normal with Wegs? I'm currently at work now but the good thing is they're very accommodating now that I have a confirmed diagnosis in place. I thought my hip replacement from the damage from prednisone was the end of it all and now it looks like it's only the beginning. Next week is my 40th birthday and what I want for my birthday is for my body to leave me alone! LOL Any suggestions what to do about this?


Have you reported the blood to your treating doctor? Has it happened again? If you are bleeding in the lungs that is very serious. If you swallowed a drop of blood from some bleed from sinus issues and coughed it up that would be much less serious if you often have blood in sinuses. I would want to know where the blood came from and also get my lab work done to make sure nothing else is going on that requires some extra immediate attention. Blood is not a good sign and usually means something needs more attention.

Sangye
06-14-2012, 02:25 AM
Do you have a history of pulmonary hemorrhage or lung nodules with Wegs? If so, particularly with a history of hemorrhage, ANY coughed up blood must be presumed to be Wegs until proven otherwise.

In 2009 I started coughing up blood. WAY more than I had coughed up when my lungs were massively hemorrhaging (only a couple tiny specks a day!). I was admitted to JHU for diagnosis but Dr Seo couldn't treat me as an inpatient. A bronchioscopy showed "old blood" and not much of it. I didn't "look sick enough" even though I was so weak I couldn't lift my head. Docs couldn't agree on whether it was Wegs or not so I was discharged with a dx of bronchitis. Dr Seo found out the next day and was really upset. Called me in immediately and said ANY blood in the lungs is Wegs because of my prior history. It was a severe flare.

Flares can and do happen at any time. I'd only had increasing weakness for a few months prior to suddenly coughing up giant gobs of blood one morning. No other signs/symptoms.

Chadwyck
06-14-2012, 05:01 AM
Sangye, I only had one episode of a lung problem as far as Wegener's is concerned. I went in for a DCR (eye surgery but can't think of the meaning of the acronym) and the opthamologist who did the surgery said he heard an alarming sound of my breathing in the recovery room. He also told my mom that he's seen nasal crusting like mine in people with different types of vasculitis. It was from that point, I realized there were many types of vasculitis and on my medical records he indicated that I was showing signs of Wegener's. So after one year of constant testing, coughing up blood was never an issue. This is why I didn't get alarmed by it, however, I've coughed very hard all night considering I wasn't feeling bad before bed. I will definitely mention it to my specialist. What I need to know is when to speak up and when to shut up.... most of the time I complain about something, it turns out to be nothing, still in remission and no signs of flares.

Sangye
06-14-2012, 05:17 AM
When you are newly diagnosed, it's normal to have trouble differentiating between Wegs and other things. While you're in that learning period (which can take several years) it's best to be on the safe side and report changes to your Wegs doc. S/he will understand and over time can help educate you on how to tell the difference. Dr Seo has done a great job with me. I came to him a terrified mess, totally unable to tell what was going on in my body. I'd had tons of complications, had refractory (unresponsive to treatment) Wegs and a number of docs who didn't take me seriously or educate me about what to expect. There was a long period of time where neither Dr Seo nor I could tell in regards to several signs/symptoms. We were both in the dark. It was only through me keeping daily records of symptoms and him seeing me over time that we could sort out some of the things that aren't really changing over time-- ie, not worsening or improving, but stable.

It also helps to learn which are signs/symptoms of severe disease activity. Coughing up blood is one. Alveolar hemorrhage is considered severe activity and must be addressed immediately. Returning night sweats are another. Unless you're on pred, night sweats are a huge red flag.

Please call your Wegs doc today.

Pete
06-14-2012, 05:19 AM
I don't think many docs treating weggies would be upset with the occasional false alarm. It could be nothing, but...

Pete

Chadwyck
06-14-2012, 09:29 AM
Ok, how about this.... no harsh coughing since the last 48 hous, but I can still taste blood in my mouth the odd time. Would that be a nasal problem or lung problem?? This confuses me a lot. Last time I coughed like crazy was during the night last night and my coughing woke me up but I went back to sleep minutes after. I was also sweating in the air conditioned room during the cough attack which I thought was strange.

Sangye
06-14-2012, 09:54 AM
Chadwyck, you **cannot** self-diagnose with Wegs. Tasting blood can be from the nose/sinuses or from the lower respiratory tract. The night sweats are a red flag. Call your Wegs doctor. The longer you wait, the harsher the meds they have to use and the higher the doses.

Dirty Don
06-14-2012, 10:44 AM
Chadwyck, you **cannot** self-diagnose with Wegs. Tasting blood can be from the nose/sinuses or from the lower respiratory tract. The night sweats are a red flag. Call your Wegs doctor. The longer you wait, the harsher the meds they have to use and the higher the doses.

I made the 'male' mistake of waiting and thinking the blood would go away, it didn't, but I almost did. Please go in to the doc.

Al
06-14-2012, 12:53 PM
Precisely what Sangye said, Chadwyck. Do not pass "Go". Do not collect 200 loonies. Straight to the doctor, man.

Al

Al
06-14-2012, 12:57 PM
I don't think many docs treating weggies would be upset with the occasional false alarm. It could be nothing, but...

PeteChadwyck, there is no such thing as "knowing when to shut up" in Weg-land. This is the road to sure-fire flaring. Anything suspicious should be reported, and this is far, far, above merely "suspicious". Sorry if I repeat myself, but GO!

Al

Chadwyck
06-15-2012, 02:16 AM
Thank you everyone for your input assisting me. I just got off the phone with my clinic. The receptionist is going over my concern with my specialist to find out what to do from now until my appointment on Monday. At least it's now out of my hands, finally.

Sangye
06-15-2012, 03:16 AM
Whew! Glad you called, Chadwyck.

Lightwarrior
06-15-2012, 04:28 AM
Thank you everyone for your input assisting me. I just got off the phone with my clinic. The receptionist is going over my concern with my specialist to find out what to do from now until my appointment on Monday. At least it's now out of my hands, finally.

I'm also glad you called, in the meantime if you get worse, get to the closest ED. Call 911 if you need to. Please let us know how your appointment went. We will be anxiously awaiting your news.

Chadwyck
06-15-2012, 07:47 AM
Well, I'm now home from the hospital. Did the blood work checking for both pANCA and cANCA, urinalysis, chest x-ray the whole shabang! After reading everybody's replies to my initial thread, I found it odd that the nurse added to it verbally... LOL She said,:

"Did you think you were Clark Kent trying to turn into Superman when you saw the blood come up??"

HAHAHAHAHAHAHA

Dirty Don
06-15-2012, 07:48 AM
Good for you! Already you feel a bit of the weight lifted...with WG, at times, it's all we can ask for...again, glad you got in!

Chadwyck
06-15-2012, 07:51 AM
The good thing is they called me right before I was about to leave. The triage nurse said to meet her at my kidney clinc to bypass the 6 hour wait time in the emergency because a lot of people go in for migranes, sprained ankles and all the minor things to make a Wegener's patient suffer. I was in and out of that place in less than an hour! Woooohooooo!!!!

Al
06-15-2012, 10:58 AM
The good thing is they called me right before I was about to leave. The triage nurse said to meet her at my kidney clinc to bypass the 6 hour wait time in the emergency because a lot of people go in for migranes, sprained ankles and all the minor things to make a Wegener's patient suffer. I was in and out of that place in less than an hour! Woooohooooo!!!!Now that wasn't so hard, was it? I'm glad you did this, Mr. Kent, and I'll bet you are too. Whatever the findings, now you can do your birthday....

Al

mishb
06-15-2012, 10:40 PM
Batman and Superman on the same forum.....we will at least be safe.
And they say that no known identity has WG!!!! :flapper:

pberggren1
06-16-2012, 05:49 AM
Funny thing is the password for my computer is Superman......lol.

Dirty Don
06-16-2012, 07:15 AM
Got the small Entertainer's Secret today, had just come off the hot golf course, parched, dry throat, voice nearly gone, a threat of coughing...got home, took 4 sprays, feels great now! Wow! Am impressed so far...I recommend at least trying it. The small pack is only 2 ounces for $6.95 & free shipping, got it in 3 days. Will order larger size next! Woohoo!

Lightwarrior
06-16-2012, 07:39 AM
Got the small Entertainer's Secret today, had just come off the hot golf course, parched, dry throat, voice nearly gone, a threat of coughing...got home, took 4 sprays, feels great now! Wow! Am impressed so far...I recommend at least trying it. The small pack is only 2 ounces for $6.95 & free shipping, got it in 3 days. Will order larger size next! Woohoo!

Woohoo indeed, what does it taste like?

pberggren1
06-16-2012, 09:10 AM
Got the small Entertainer's Secret today, had just come off the hot golf course, parched, dry throat, voice nearly gone, a threat of coughing...got home, took 4 sprays, feels great now! Wow! Am impressed so far...I recommend at least trying it. The small pack is only 2 ounces for $6.95 & free shipping, got it in 3 days. Will order larger size next! Woohoo!

I will wait for your 2 week report Don. Then I will decide on whether or not to order.

Al
06-16-2012, 12:51 PM
Got the small Entertainer's Secret today, had just come off the hot golf course, parched, dry throat, voice nearly gone, a threat of coughing...got home, took 4 sprays, feels great now! Wow! Am impressed so far...I recommend at least trying it. The small pack is only 2 ounces for $6.95 & free shipping, got it in 3 days. Will order larger size next! Woohoo!Cool! Follow the tee shot with the throat shot...and that's no bogey!

Al

Dirty Don
06-16-2012, 02:59 PM
Woohoo indeed, what does it taste like?

Not bad, pretty bland actually...maybe a very slight hint of fruity???? Certainly something you can swallow! LOL

Dirty Don
06-16-2012, 03:00 PM
I will wait for your 2 week report Don. Then I will decide on whether or not to order.

Will do, had another 3 shotter tonite, no coughing still, so far so good!

Dirty Don
06-16-2012, 03:04 PM
Cool! Follow the tee shot with the throat shot...and that's no bogey!Al

Hmmm, had plenty of those today, probably enhanced the parched throat shouting deleted expletives till the voice went, down the fairway!! LMAO

Chadwyck
06-19-2012, 01:43 AM
I just got home from today's hospital appointment. It looks like the coughing up blood last Monday, did in fact come from the back of my nasal and drained down my throat while I was brushing my teeth. The blood did "not" come up on its own. The blood work also indicated that I'm still fully in remission. I forgot to ask about the pANCA and cANCA results... I was so excited to hear the news I forgot everything else!

The bad part is because I was on crutches for a whole year up to my hip replacement, it looks like the joint pains is from favouring one side like everybody thought. Now that I'm off the crutches since January of this year, the problems are still there but getting worse on both knees and ankles. So now I just have to get that looked after and treat it as an individual problem. We don't know for sure that is arthritis causing the joints to lock, but we do know what isn't causing it... Wegener's! At least I got some good news today.

Sangye
06-19-2012, 02:27 AM
I don't want to rain on your good news but I'm still skeptical, Chadwyck. None of that accounts for the increasing night sweats-- a classic sign of trouble. I've seen this (and experienced it myself) so many times-- Wegs symptoms explained away as this or that. Increasing joint pain in both knees and ankles is suspect, particularly with the night sweats and sudden bouts of coughing up blood. I'm not convinced about the explanation of the crutches and favoring sides, even with a chiropractic understanding of body mechanics.

I've had numerous flares where my labs still looked great, as if I were in remission. I'm hoping your doctors are right. Please keep a daily log of your symptoms regardless. Be as objective as you can. Denial is a powerful force-- been there, holy smokes done that.

Chadwyck
06-19-2012, 02:32 AM
I was thinking that myself, Sangye. My body won't know to behave just because I'm told I'm in remission. It will still do to me what it ususally does. I always have to remind myself 3 things.

1) I work 1:00PM - 9:00PM

2) The doctor's hours of operation are 8:00AM - 4:30PM

3) Wegener's doesn't follow a schedule, it works when ever it feels like it. I'm the only one that suffers whether I believe what the doctor tells me or not.

I'm more afraid of #3 than anything else. Therefore, I keep an entire log of what happened, how I felt & what I did about it.

Sangye
06-19-2012, 02:38 AM
I'm glad you're keeping a log. That's the best thing you can do. I suggest rating and/or commenting on the same issues each day so that you can get a good idea of how they're doing over time. For example, every day make a note about pain levels and generally where the pain is. Also, I like to keep record of what major activities I'm able to do and how I respond-- eg. Vacuumed house. Took 2 hours and totally flattened me. Additional info about new symptoms, resolving symptoms etc.. is great of course.

Al
06-20-2012, 12:13 AM
Those night sweats scare me too. Listen to Sangye, Chadwyck. Your log is a great start, by the way.

Al