Situation update

[Psyborg]

I just wanted to put this in a single spot so I wasn't posting multiple threads :)

Rtx is done. Now my insurance is saying there was no pre-approval. I hope that works out...64k between the two treatments would pretty much bankrupt me lol. I think its just insurance company games though.

My doctors secretary has me to the point that I won't call unless ihave something unbelievably serious come up. I will be talking about this at my next appt. At least I got a number for the nurse practitioner at my second infusion.

The pulmonologists have me on cpap now. It does help the sleep, but I feel more congested during the day now, not sur if my left lung is just getting more opened up than it has for a while or what. Now I have to find out if insurance will cover that when I don't have apnea.

[pberggren1]

Bob, you have to get the secretary thing resolved. You have to be able to call or contact your doc all the time without worrying about things like that.

And then the insurance to worry about as well? GEE WHIZ!!!!

[Sangye]

Have you mentioned the increased congestion to your pulmy? Maybe your nose is getting dried out or something.

I hope you can resolve the issues with the receptionist and your insurance. What a pain.

[Psyborg]

Oops I meant chest congestion. I feel like Im coughing up more gunk since using cpap.

Overall the rtx must be doing good because between stress about the doctor and massively increased stress at work I'm still rolling along lol. I am in a perpetual state of headache though.

[Sangye]

Oh, well maybe that means the increased oxygen is helping mobilize some of the trapped mucus. I bet your doc will know.

Are you having tension headaches or some other type?

[vdub]

I have had a cpap for about 3 years now. I got it during the dx stage when no one knew what I had. It does help, but I don't love it. I do use it every night and take it with me on vacation (holiday). My cpap has a humidifier on it and I do like that.

One of the very best things that happened to me was a surgery on my nose to open up the sinus channels. I was somewhat apprenhensive when it was first suggested, but every day, I get the benefits from it and it is great!

I hope you get that insurance thing straightened out, Bob. That's got to be a pain. I have been real lucking in that regard -- my insurance is pretty decent.

[Psyborg]

I'm thinking that is the case on the mucus Sangye, at least that sounds probable :)

As far as the headaches, the Nurse Practitioner thought it was probably folic acid depletion, so they switched me from Folic Acid daily to Leucovorin weekly (which I'm assuming must be more potent). They headache is right dead center between my eyes. Different than the sinus headaches that I've experienced before.

The hardest thing about the CPAP is getting used to something being on my face at night. I'm still taking it off at about 4:00 am on occasion :)

I'm hoping the insurance thing won't be a big issue...I'm hoping the hospital just didn't provide all the info they should have.

[Rini]

ok so i have gray snot that was bad like bloody noses all the time , pulling beef jerky out of my nose nasty...diagnsed & on drugs it got lighter VERY slowly but im at the point that i can smell again. I feel like Sulfameth helps but im not shur what it is really supposed 2 be doing...at what point should i be really consurned about my nose? are there red flags ...aside from the granuloma snot stuff that is like puddy on the back of my thought? i mean this is seriously nasty but it has been getting lighter (as in the amount of congestion)

[Psyborg]

I don't have sinus involvment at this time so I'm going to defer on that question, but I think that many of the folks on the forum use a Neti Pot to help with the sinus congestion issues.

[pberggren1]

If you have blood or thickening mucus and more mucus in nose then that is when I start to get concerned.

[Psyborg]

I think the CPAP is making the airway worse. It worked well that first week, but it's been downhill the last two. Coughing a lot more, but also getting chest pain when it's on and having trouble breathing when in the same sleeping positions again.

[Rini]

:( i wish i could have info 2 make u better. sleeping oddly sucks. best wishes

[pberggren1]

This is not good Bob for sure. I sure hope Dr. VF has some ideas.

[Sangye]

Bob, you definitely need to call whichever doctor has you on it. You could be damaging your lungs. Maybe the setting is too high or maybe something else is going on.

[Psyborg]

I saw the Pulmy today...but CC screwed up my documentation they provided him. (Issue with notes not matching what I was told). Anyway he says he'd like to get my card to see what the machine is saying and that I shouldn't worry as the pressure is very low (5cm) and realistically can't cause any real damage. I'm going to go back for another sleep study so the insurance should pick things up next month. Going to ask about a different mask as well as the mouth and nose makes me feel like I'm suffocating at times.

[Sangye]

That's good. What explanation did he have for the chest pain?

[Psyborg]

He actually said that shouldn't be related to bronch's at all. I'm going to ask my Wegs doc when I'm at CC next week.

[jola57]

I do think that the air is starting to move the mucous from your lungs and just like after a bad bronchial attack, your lungs hurt.

[Psyborg]

Yesterday I noticed something I had tied together previously. First I went to Cedar Point on Saturday, discovered that as fun as it is my head can't handle roller coasters like it used to :p.

Anyway end up lying around most of the day yesterday. And one time I jumped up to fast...nearly blacked out. This was followed by ringing in the ears...which I had noted before. But then I noticed a massive metallic taste in my mouth. After it happened it clicked that that happened on occasion when I got dizzy. It was just so random that I never tied things together. Has anyone else ever had anything like this?

[Sangye]

I don't know what to make of the dizziness and metallic taste combo, but I can say that I'm glad I did all my rollercoastering many years before I became a chiropractor. I'd never do them knowing what I know now!

[norcalian]

Yesterday I noticed something I had tied together previously. First I went to Cedar Point on Saturday, discovered that as fun as it is my head can't handle roller coasters like it used to :p.

Anyway end up lying around most of the day yesterday. And one time I jumped up to fast...nearly blacked out. This was followed by ringing in the ears...which I had noted before. But then I noticed a massive metallic taste in my mouth. After it happened it clicked that that happened on occasion when I got dizzy. It was just so random that I never tied things together. Has anyone else ever had anything like this?

When I was last in the hospital for pneumonia, the antibiotics I was on caused what they called orthostatic hypotension...basically really low blood pressure every time I stood up...it kept me in bed for three days straight. Anyway, I didn't get the metallic taste in my mouth, but I did get the dizziness and the ringing in my ears...it could be pretty intense at times. Have you started any new meds?

[Psyborg]

Nope, same meds Ive been on for a while now.

[Trudy]

Yesterday I noticed something I had tied together previously. First I went to Cedar Point on Saturday, discovered that as fun as it is my head can't handle roller coasters like it used to :p.

Anyway end up lying around most of the day yesterday. And one time I jumped up to fast...nearly blacked out. This was followed by ringing in the ears...which I had noted before. But then I noticed a massive metallic taste in my mouth. After it happened it clicked that that happened on occasion when I got dizzy. It was just so random that I never tied things together. Has anyone else ever had anything like this?

Bob, Do you have kidney involvement? When my kidneys are acting up my first symptom is I get a metallic taste and have no appetite.

[Psyborg]

Not up to this point. Kidney function always looks good on my lab work.

I'm starting not to trust my labs though. I always seem to have oddly good lab work even when I've got stuff going on. I managed to get cirrhosis while never having liver enzymes more than just slightly elevated.

[Psyborg]

Update...after three days of no CPAP I was actually doing pretty rough. Lungs seem to have decided they like the CPAP. I had another sleep study to replace the one they lost...geez how do you lose something like that?? Anyway they contacted me back today and said I have severe obstructive sleep apnea. Blows my mind as I don't snore and never had issues before with O2 levels in the blood and wife never noticed me not breathing at night. So it looks like I'm gonna be permanently stuck on CPAP now.

Get to see Dr VF next week so I'll have a list of questions. I'm concerned as the breathing is getting worse still when I expected improvement, but I'm never sure how much is my own mind. Though at this point I seem to consistently underestimate what I'm going through on a regular basis.

[Sangye]

Wow, so glad they found that Bob. It can really wreck your heart to have that go undiagnosed. Not to mention dying from it. Whew.

[Psyborg]

Evidently I was stopping breathing 75 times an hour...that kind of blows my mind...when did I find time to actually breath LOL. I guess I simply can't do anything part way...geez.

I do have some ongoing chest pain. I've not really said much to the family because I don't want to freak anyone out and I honestly seem to have issues with denial. Its frequent enough that I figure I should probably say something to my doc on Tuesday. My list is getting annoyingly long again.

What really bugged me yesterday is that the first time ever I had issues with my breathing while just walking. I shouldn't be getting worse at this point after RTX, MTX, Pred and everything else. Hoping that's just seasonal. Bloodwork is, as always, perfectly fine.

[elephant]

BOB, that can't wait till Tuesday. Need get in there sooner. Chest pain needs to be check out ASAP.

[Psyborg]

It's really not acute pain...I think it's my lungs to be honest.

[Sangye]

BOB! Please don't wait or try to self-diagnose this one.

[pberggren1]

Ya, please Bob go to ER and don't be stubborn like me. Just look at me. I have pneumonia. And that can turn deadly very quickly. But, I never had chest pain.

[Psyborg]

Everything is ok...it was inflammation in the cartilage next to the sternum. The CPAP has me breathing very deep and irritated the area...basically it hadn't been worked in some time.

Had appointment with Pulmy and Rheumy today. I will be starting to see a local Pulmy at OSU here in Columbus. Not because I wasn't getting good help at CC, but my mom works in the Respiratory clinic at OSU so I have a good source to get really good followup and information.

My symptoms are pretty much back under control. I had had more issues with breathing but the PFT says I'm actually doing better (very slightly) than the one three months ago. Basically the chest congestion appears to be allergies.

I am now trying to switch from MTX to Immuran. My history of Liver problems makes it a good idea to give this a try.

Overall I'm feeling less concerned about things now...sometimes a bit of information helps you feel better.

[elephant]

Glad to hear, and hope the Immuran work well for you.

[Psyborg]

Oh and back to 10mg of Pred again...lol. Going to taper 1mg every 3 weeks as 2 weeks was too fast last time, but 4 weeks feels too slow.

[BrianR]

Nice to know that your chest pains are due to a "worked out" cartilige!! As for the pred wean, Marta has been dropping only 1mg per month ever snce she was at 15 mg. Her Dr has a conservative approach to weaning and so far this seems to be working for her. She is now at 9mg and may slow the wean down even further when she makes her next drop to 8. We'll see what the DR says but she may end up doing 8 mg for a couple of days then 9 for a day then back to 8 etc.

Take care Bob and keep improving!

[Sangye]

That's good news, Bob. :smile1:

[ScreaminMeanie]

I'm so glad to hear that, Bob. Hope the imuran works well for you.

I was unsuccessful at tapering pred until I did it by "pulsing," e.g., 5 mg one day, 2.5 the next, then 2.5/2.5, then 2.5/0, then 0/0. Take this with a grain of salt, since my "failed" attempts were prior to rtx, but it might be worth running by your doc.

[Psyborg]

Down to 9 mg now on the Prednisone, and Imuran seems easier on my body than MTX was. Overall I am feeling better, trying to not wait for another shoe to drop again :) Made it through the most stressful part of my project at work, still working through implementation, but feeling pretty good overall. If anything the stress letting up feels weird again.

[Al]

Nice to know that your chest pains are due to a "worked out" cartilige!! As for the pred wean, Marta has been dropping only 1mg per month ever snce she was at 15 mg. Her Dr has a conservative approach to weaning and so far this seems to be working for her. She is now at 9mg and may slow the wean down even further when she makes her next drop to 8. We'll see what the DR says but she may end up doing 8 mg for a couple of days then 9 for a day then back to 8 etc.

How do you split the pills this finely...? Must be with a steadier hand that I have!

Al

[Trudy]

How do you split the pills this finely...? Must be with a steadier hand that I have!

Al
I get 1 mg (little baby pills) and add them to 5s or 10s

[drz]

I get 2.5 and 1 mg pills and add them up as needed to get dosage desired. Nine equals two 2.5 mg and four 1mg. They are also scored so makes them easier to split when needed too.

[Al]

I get 2.5 and 1 mg pills and add them up as needed to get dosage desired. Nine equals two 2.5 mg and four 1mg. They are also scored so makes them easier to split when needed too.

My original halfwit-i-cism was a reference to: No one takes just 1 mg of prednisone; 20, 40, or 60 maybe, but..1? give me a break! But now I have to ask you: How can do do this higher math, stoked up on steroids...?

Al

[Rose]

5 mg pred tabs are the lowest you can get in South Africa. I have tried to go lower splitting to 2.5mgs. Too much. Then tried to quarter them and the tabs disintegrated. Before this last flare I had been stuck on 5mg. Recently spoke to chief pharmacist about getting the 1mg into the country. Never really got a straight answer. Something about Medicine Control Council. Once back down to 5 I must pursue this more.

[Psyborg]

So here is my question for those that reach remission. Do you ever feel the same again?

I mean I'm guessing I'm basically in remission right now. But I'm tired all the time now. I have basically very few other symptoms, but Fatigue (and the occasional headache) can't be shaken.

I think I can deal with the occasional low level of pain in a joint here or there. I've gotten to the point I can tell Wegs pain from Pred Reduction pain. But man being tired frequently sucks. I hate getting asked by people in meetings if they are boring me...lol though usually they are :p

[Al]

So here is my question for those that reach remission. Do you ever feel the same again?....

One question, Bob, is, what is remission? Something the doctor made up? An actual different state? I think the image of a sleeping dog is closer: It may be sleeping, but it is still a dog. And to keep it asleep requires a calm situation.

There are many cues for us to be fatigued: The weather, confusion, boredom, and so on--sure. But other cues are distinctly physiological. For instance, the state of the immune system is constantly monitored by the pituitary, which regulates most everything. In the case of GPA sufferers, there are surely multiple reasons for fatigue, but I think one of the most important ones is that lying around is a way to avoid unduly stressing an immune system that, being blasted from every direction, is having a very tough go of it. How to overcome this? Desperation, perhaps. You see the bills coming due and you realize you need to actually do some work. In this way, I have often been able to slough off the fatigue and accomplish something. In small doses, this works, but when I've tried to go all-out, I've paid for it, dramatically. For me, thew right balance seems to be: sleep in, putter around (like now) for a while, take a nap, then put in a day's work, taking time off for dinner, and then putting in an hour or two reading and such before quitting.

The issue, as you allude to indirectly, is that it is impossible to get any empathy from those, including doctors, who are not (then) feeling the same way. In a way, I think I would rather see the doctor when he is having a bad day and just wants to go home and put his feet up. Everyone gets tired, after all. It's just that some of us stay tired longer.

Al

[Psyborg]

My line of work allows me to get by fatigued. I'm surely less productive when it acts up, but still able to continue.

I think my frustration is some days I feel almost normal, then a few days later something will crop back up. I get the sleeping dog for sure. I think that when you first hear of the magical "remission" you think all better unless you flare...at least I did. But that doesn't seem to be a realistic expectation in retrospect.

[vdub]

Do you ever feel the same again?

I'm in remission. Getting off the chemo made all the difference in the world and I "generally" feel great. But, something is missing. I still have some sinus issues, I clear my throat a lot, I get tired more easily, and my muscles (particularly in my shoulder/arms) often ache. I am on a regimen of tramadol (codeine & tylenol). I feel good and really don't have a lot to complain about, but it won't ever be the same.

Something else that won't ever be the same is the way I think about little aches, pains, colds, etc. I immediately consider "could it be a flare". I am hypersensitive to anything that goes wrong. My PCP told me it would be that way....

[Sangye]

I bounce in and out of remission quite a bit, but I still feel pretty lousy in remission-- very low energy, easily fatigued, pain, major problem with swelling, etc.... I know when the Wegs is active because those symptoms become extreme. I'm very disappointed in how poorly I feel in remission. It's due to a combo of damage from the drugs, Wegs and complications. Sure is hard to tell it all apart anymore.

[Dirty Don]

I'm not into WG as far or as long as many in here, but I am frequently confused, overly aware, and even defensive about whether some of my symptoms are drug damage, surgical damage, disease, or just getting oldER!!

[Psyborg]

Don, I think that's where I am. I'm 39 now, so I'm kind of at that age where some stuff starts catching up with us ya know...so I'm not sure what is what half the time.

Down to 7mg of Pred again today. A bit nervous about that as that was where i was when I flared last time....rashes and such. Though everyone around me says I look considerably better post RTX...I have my fingers crossed.

[Psyborg]

Anyone take flonase regularly? My pulmy wants me to try that because I have some inflamation in my sinuses. My specialist has always said I have no sinus involvement so I think it's from allergies (which would fit the stuffy nose I've had). Anyway I'm having serious issues sleeping with the full CPAP mask on, but didn't feel like i got enough air through my nose with nasal pillows (have to strap my mouth shut to make me breath through nose anyway). Oy vey I'm a mouth breather lol.

[pberggren1]

I avoid stuff like Flonase at all costs.

I prefer to go natural if I am having crusting and bleeding, etc.

[delorisdoe]

I had aproximately 8 years of remission and by remission I mean no pain, no fatigue, no lungs or sinus issues except when I would have mini flares. When not in a mini flare though I felt great.

[pberggren1]

Leigh, what exactly is your avatar?

[Psyborg]

Think my yearly chest cold is about to hit...lousy timing. Not much sick time left. Hopefully this tickle in the chest isn't what I think it is lol.

[Rini]

I am 19, the doctors...they ALWAYS start with "Your not old?" but by the end of the conversation decide i really am...do to the symptoms I always get put on a floor where I am by far the baby. So hear is what i decided, do to the number of adults i know who watch cartoons and the people under 30 with arthritis, hot flashes ex. peoples personality, body and number of years they have been on the planet never really match. Today is the "present" you know? I have taken to telling them 87 if they ask...

[Sangye]

Why does Leigh have a picture of a vacuum cleaner as her avatar? LOL

Bob, doctors love to put patients on flonase. However, it contains corticosteroid and will have the same effects as pred (eg bone loss). It also causes rebound inflammation, meaning the more you use it, the more it increases inflammation as it wears off. So your body becomes dependent on it.

[Psyborg]

Why does Leigh have a picture of a vacuum cleaner as her avatar? LOL

Bob, doctors love to put patients on flonase. However, it contains corticosteroid and will have the same effects as pred (eg bone loss). It also causes rebound inflammation, meaning the more you use it, the more it increases inflammation as it wears off. So your body becomes dependent on it.

Well I think my body decided it isn't up for Flonase anyway. I thought I'd been feeling sick, but felt fine every morning. It occurred to me last night that it comes on after taking flonase, coughing is a rare side effect when I looked today. I'll be avoiding the flonase to confirm, but I'm pretty confident that it caused the problem.

[Psyborg]

Saw my new Pulmy (who is local finally). He's the top Pulmonolgist at Ohio State, so I'm in good hands there. He ordered a CT with inspiration and expiration as well as a pulmonary exertion test.

Also had a echo done yesterday as well, that was a new experience. Kind of weird to watch the heart valves on that screen. Hoping for once I have a test come back completely normal there :)

[pberggren1]

Saw my new Pulmy (who is local finally). He's the top Pulmonolgist at Ohio State, so I'm in good hands there. He ordered a CT with inspiration and expiration as well as a pulmonary exertion test.

Also had a echo done yesterday as well, that was a new experience. Kind of weird to watch the heart valves on that screen. Hoping for once I have a test come back completely normal there :)

The echo I had done last year I was not able to see the screen because it was not facing me. I will be booked for another one this year but they said the waiting list is over 5 months.

[Dirty Don]

Kind of weird to watch the heart valves on that screen.:)

Got to see the inside of my sinus cavities this morning, in color, camera just kept spinning around, I kept the gag reflex under control as best as possible, doc kept narrating away, jeez!!!! But, it IS interesting, just annoying inside my head, that close to what I have left for a brain!! LOL

[delorisdoe]

I hate ent's and their little toys and aperatuses.

[Michael Dean]

Bob, I've been on the cpap for a couple of years now. Before I my wegs problem. I had sleep apnea, It took me quite a while to get used to it.
But now I'm fine with it I sleep really well with it. My insurance pays for a new mask, filter and hose every three months.

Good Luck

[Chris G]

The echo I had done last year I was not able to see the screen because it was not facing me. I will be booked for another one this year but they said the waiting list is over 5 months.

Five months for an echo?!?!?!? Is there only one machine in Canada?

[pberggren1]

Five months for an echo?!?!?!? Is there only one machine in Canada?

Welcome to hick town Canada........lol. Very backwards here in some respects. I am sure if it was an emergency I would get it done tomorrow. I had one done last year in June while I was in the hospital. I asked my doc one day to have one and the next day I was having it.

[pberggren1]

I have been scoped so many times in my nasopharynx that it does not bother me at all. I have seen it on the screen a few times as well. Same goes with otoscope, cytoscope, and the one that goes into the back passage.

[Al]

Got to see the inside of my sinus cavities this morning, in color, camera just kept spinning around, I kept the gag reflex under control as best as possible, doc kept narrating away, jeez!!!! But, it IS interesting, just annoying inside my head, that close to what I have left for a brain!! LOL

Sorta reminds me, Don, of getting a colonoscopy. I was awake, watching the video, and Rob (who performed the procedure, and is also my PCP, which is why I address him by his first name), just kept up a steady patter--"ooh-a polyp!" sort of talk. It was weirdly fascinating....

Al

[Psyborg]

Echo was all clear...so first time for a test in a while that was completely normal :)

[Dirty Don]

It was weirdly fascinating....Al

You know I wanna run with this, but I'll be nice by just saying that WG is weirdly fascinating!!! And the little techie side trips are kinda neat!! LOL...then again, I'm easily entertained!

[Dirty Don]

Echo was all clear...so first time for a test in a while that was completely normal :)

Most excellent Bob!! Great news for you, keep it up!

[jola57]

Hey Phil, here all these Americans eh, complain abut their insur'ance but get to see top notch docs, gomtomMayo, get scoped, CT'ed, imaged right away and we poor co'sins Canucks have free insurance suposedly best in the world and have to wait 5 months for echo or 6 months for kidney ultrasound as in my case. LOL :blink::blink::blink:

[Al]

Hey Phil, here all these Americans eh, complain abut their insur'ance but get to see top notch docs, gomtomMayo, get scoped, CT'ed, imaged right away and we poor co'sins Canucks have free insurance suposedly best in the world and have to wait 5 months for echo or 6 months for kidney ultrasound as in my case. LOL :blink::blink::blink:

Yeah, yeah. We all have something to complain about. And, fact is, we all do. It's not, however, is our contention that the grass is greener. Rather, "Hey! Your brown grass is cheaper 'n our brown grass!"

Al

[jola57]

Ha ha you said it Al

[Rini]

Yeah, yeah. We all have something to complain about. And, fact is, we all do. It's not, however, is our contention that the grass is greener. Rather, "Hey! Your brown grass is cheaper 'n our brown grass!"

Al

grass cost greener :D but ur right in the end we pay the green for the brown

[delorisdoe]

Why does Leigh have a picture of a vacuum cleaner as her avatar? LOL

Bob, doctors love to put patients on flonase. However, it contains corticosteroid and will have the same effects as pred (eg bone loss). It also causes rebound inflammation, meaning the more you use it, the more it increases inflammation as it wears off. So your body becomes dependent on it.

because it was new, unexpected and i love it.

[delorisdoe]

Sorta reminds me, Don, of getting a colonoscopy. I was awake, watching the video, and Rob (who performed the procedure, and is also my PCP, which is why I address him by his first name), just kept up a steady patter--"ooh-a polyp!" sort of talk. It was weirdly fascinating....

Al
I will take a colonscopy any day over anything that ent did to me.

[delorisdoe]

Hey Phil, here all these Americans eh, complain abut their insur'ance but get to see top notch docs, gomtomMayo, get scoped, CT'ed, imaged right away and we poor co'sins Canucks have free insurance suposedly best in the world and have to wait 5 months for echo or 6 months for kidney ultrasound as in my case. LOL :blink::blink::blink:

I have never waited more than a week for anything

[Dirty Don]

I will take a colonscopy any day over anything that ent did to me.

OMG, I hate that camera whirling around in my head next to my brain!!! I'd rather have the colonoscopy too, such choices...sheesh!

[Psyborg]

In two weeks I'm going on a 3 day cruise, so naturally I'm starting to feel sick :) I hope this isn't a stomach bug coming on. Everything makes my stomach hurt after I eat. For those that don't know my story...I had a gastric bypass before diagnosis, so for the most part I don't have much along the lines of a stomach so getting stomach pain/nausea doesn't really happen unless I accidentally overeat. Got pain in my neck and upper back today too...which strikes me as a bit flu-like. Just hope that isn't going on...with all the meds I don't seem to reliably be able to tell anything but chest colds anymore.

So it's a three day cruise...of course I keep pondering a 3 hour cruise. And it leave on Friday the 13th going towards the Bermuda Triangle...if you don't hear from me after just look for the Professor and Mary Ann.... :p

[Dirty Don]

Not an answer, but have you considered anxiety?!?!?! Hmmmm, if so, then a simple Xanax or such will do the trick...I do it for flights, long ones especially...

Don

[delorisdoe]

So here is my question for those that reach remission. Do you ever feel the same again?



I was in remission for several years with only mini flares here and there. I found that it took at least a full year before I felt good enough that some days I forgot I even had wegeners. I felt better once I was off the drugs but not myself until later.

I am also 39 and I use that as one of my best excuses for why I dont feel good.

[Psyborg]

Saw the new doc yesterday and it went ok. He was right with me on leaving the Wegeners treatment plans to the experts. What I found interesting is that in my city of about 34000 there are two other Weggies running around. Makes me wish they knew more about what causes this, I'd love to compare notes, but of course the doctor isn't allowed to pass on that sort of info.

[vdub]

I have at least one other in my area. I have talked to him and his situation is totally different than mine....

[Nancy-S]

Bob, can you ask the dr to pass your contact info to the other two? They might love to talk to you. My friends friend was just dx. She contacted me for info.

[Psyborg]

I may do that next time I'm in to see him. Though I'm hoping I stay reasonably healthy for a while this time around :)

[Lightwarrior]

I may do that next time I'm in to see him. Though I'm hoping I stay reasonably healthy for a while this time around :)

I hope you stay reasonably healthy for a long time Bob.

[Sangye]

Glad your appointment with the new doc went well, Bob.

[Al]

Saw the new doc yesterday and it went ok. He was right with me on leaving the Wegeners treatment plans to the experts. What I found interesting is that in my city of about 34000 there are two other Weggies running around. Makes me wish they knew more about what causes this, I'd love to compare notes, but of course the doctor isn't allowed to pass on that sort of info.

A reason past ethical responsibility? Some doctors may be nervous about patients comparing notes!

I've heard of similar clusters if WG sufferers, though I don't know if they are just a statistical blip or if they mean more. In any case, Bob, we're all rooting for you (and the rest of us!) to function "normally" for a long time!

Al

[Natalie]

healthfor a long time Bob I wish for you . ! And I hope you do get in-contact with the other weggies , I think its good to meet up