new

[skipper]

hi I was just diagnosed with Wegeners although I have had the symptoms for a very long time, I guess I am just looking for information. right now I am just tired and wonder if energy ever returns, Glad I found this site, Skip

[pberggren1]

Welcome Skip.

Tiredness is par for the course for most of us.

Please tell us more.

[Chris G]

Welcome Skip.

Fatigue is my greatest complaint these days. Even though I feel like the disease is being controlled, for the most part, the fatigue never goes away. I've not achieved remission yet. I wonder whether energy levels return once remission is achieved? Maybe someone who has had a remission can answer that for us both.

Hang in there Skip

[annekat]

If you have to have Wegener's, I'm glad you found the site, Skip. I assume you are getting proper treatment, and it will take a few months for the tiredness and other symptoms to improve. As Phil says, most of us continue to deal with the tiredness, and some days are worse than others. But in my case and others, I have a lot more energy than I did in the beginning stages of treatment, so there is hope for you to experience the same.

In any case, you came to the right place. I've found this to be a most supportive, informative, and fun group of people. You can feel free to ask any question and share anything. And don't forget the Search function, where you can read lots of posts from the past on lots of different subjects.

Best wishes for recovery and eventual remission.

Anne

[Psyborg]

I'm in remission and I can say I do have much better energy levels than when I was I'll. I don't know if it will ever be like before, but it's better than it has been.

[pberggren1]

I'm in remission as well but this remission I have much less energy than any other remission.

[annekat]

Phil, are you still on any of the drugs now that you are in remission? And how much? Just curious.

Anne

[Dirty Don]

Welcome Skip, you have come to the right place...lots of stories and info, some very informed, some just things to think about as you continue this journey. I am 6+ months into treatment on mtx & pred. Feeling better than I have in a long time on many days, others, not so good...but am avoiding relapse & headed toward an unofficially suggested remission...hope hope hope. Please ask and share stories, we're all pretty well stocked up on all the 'uglies' of this disease and have similar experiences...just ask! Take care & good luck! Don

[JanW]

Welcome, Skip. I got into remission pretty quickly with the drugs (dx January 2010) and my energy levels are probably close to where they were before, although when I get tired I tend to not bounce back as quickly as I might have in the past.

I hope you will share more of your story with us.

[pberggren1]

Phil, are you still on any of the drugs now that you are in remission? And how much? Just curious.

Anne

I'm still on 150mg of aza and will be probably for at least another year. I'm at 15mg of pred as well and will be down to 10 on Wednesday. I'm on Septra as well but will be off that on Wednesday. Those are the main ones I'm on.

[annekat]

I'm still on 150mg of aza and will be probably for at least another year. I'm at 15mg of pred as well and will be down to 10 on Wednesday. I'm on Septra as well but will be off that on Wednesday. Those are the main ones I'm on. Thanks, Phil. I was asking because from reading some of your past posts, it sounds like I may have some similar sinus issues to yours.

Anne

[mishb]

Hi Skip,

I'm so sorry you got hit with a diagnosis of Wegeners but I'm glad you found this wonderful site.
Some very knowledgeable people can be found here, so don't be afraid to ask away.

Take care and I hope you can get on top of things quickly

[drz]

The short answer is generally NO for many of us, but it does get better with treatment. The "new normal" results in scaling back expectations for a days activities. You appreciate what you can do much more.

[pberggren1]

Thanks, Phil. I was asking because from reading some of your past posts, it sounds like I may have some similar sinus issues to yours.

Anne

What sort of problems are you experiencing with your nose and sinuses?

[annekat]

What sort of problems are you experiencing with your nose and sinuses? It's not too bad lately, just the normal crusting, running, and post nasal drip which gets into the trachea and bronchii, and all of that has improved quite a bit. But I apparently have "sinus destruction", or eroding of the bones and tissues of the sinuses, and my ENT thinks the damage is permanent and we are just slowing or stopping the process with treatment. I could be wrong, but I seem to remember coming across some posts from you indicating you may have similar things going on. I also thought I remembered you, or others, having to have built-up stuff sucked out of your sinuses from time to time, which my ENT now says I should do every couple of months or so. I don't know how common all this is, or if most people just have the sinus issues without it advancing to that stage.

Anne

[skipper]

my main cocern right now is productive cough. it exhausts me I have read a lot of negative stuff this week so glad I found something positive here. i ws getting very down and hopeless

[pberggren1]

It's not too bad lately, just the normal crusting, running, and post nasal drip which gets into the trachea and bronchii, and all of that has improved quite a bit. But I apparently have "sinus destruction", or eroding of the bones and tissues of the sinuses, and my ENT thinks the damage is permanent and we are just slowing or stopping the process with treatment. I could be wrong, but I seem to remember coming across some posts from you indicating you may have similar things going on. I also thought I remembered you, or others, having to have built-up stuff sucked out of your sinuses from time to time, which my ENT now says I should do every couple of months or so. I don't know how common all this is, or if most people just have the sinus issues without it advancing to that stage.

Anne

I never have had stuff sucked out of my nose or sinuses. I find the waterpik does the job for me. But each case is different for sure. Just do your homework. Any unneccessary procedures like this is best to avoid is at all possible. How does your ENT know that you have eroding of the bones?

[skipper]

i hope so as well but my doctor kept saying it was virus finally my son took me to hospital but many organs involved by then, I knew there was something serious but I had always been so healthy so this was a shock i'm sure it was to you as well skip

[annekat]

I never have had stuff sucked out of my nose or sinuses. I find the waterpik does the job for me. But each case is different for sure. Just do your homework. Any unneccessary procedures like this is best to avoid is at all possible. How does your ENT know that you have eroding of the bones? I'm not sure whether he knows that or is making an educated guess. Seems like he'd need some sort of imaging test to really see it. I'm also not sure I'll have to have that sucking done that often, since there seems to be less discharge than before. He's not a WG specialist and not the one treating me for WG, but I think he's a good ENT and understands the mechanics of the sinuses. Someone on here has posted about "sinus destruction", and someone has posted about cleaning out the sinuses in that way.... maybe neither was you. My pred memory plays tricks on me, for sure. I may start a thread about this, rather than hijacking Skipper's thread.

Anne

[annekat]

my main cocern right now is productive cough. it exhausts me I have read a lot of negative stuff this week so glad I found something positive here. i ws getting very down and hopeless I have been through it with the productive or non-productive cough. I had lung involvement but once that cleared up the coughing continued due to sinus drainage into the lower airways. Yes, it is exhausting. If it is productive, that is good. If it isn't, Mucinex or generics work great to loosen things up and get that out of there.... take often and with plenty of water. There is lots of negative stuff about WG and if you were recently diagnosed, it's understandable that you feel down. But for many of us, a lot of it gets much better even if it doesn't go away. Don't pay attention to what you read online about life expectancies, etc. It is different for everyone, there have been lots of advances made, and many people have gone into remission and are leading fairly normal lives. I would bet that a lot of what is online is outdated.

Anne

[RudiK]

Hello Skip, welcome to this forum. It is by far the best source of information about WG, you may have to take time to search through the volume of messages, but you will find an answer. As for having energy. I went into remission last Sept./Oct. and went onto a reduced meds schedule, my energy has come back when compared to the level when I was first diagnosed. I get up at 5:30 AM, my regular time since I went into HS (I'm now 68 years old) and by 1:00 PM, no later than 2:00 PM, I have to take time out for a nap for about an hour or two, and by 10:00 PM I'm done for the day.
I'm taking 150 mg Aza (50mg 3x a day), 7.5 mg Preds, 40 mg Benicar, 12.5 mg HCT, 10 mg Amlodipine, 40 mg Pantoprzole, 200 mg Gabapentin, and a couple of other meds unrelated to WG.

Take care. Rudi K

[Al]

Welcome, Skip, and ask away. Many of your questions have likely been addressed on other threads, but it is hard to sort through them all.

Fatigue: most of us have good days and bad days. For my part, mornings are really stupid; then again, I never was much in the IQ department before mid-afternoon. The rest of it I could chalk up to age, but I suspect the ailment plays a big role--partly through the anemia, which is, in my case, comes with the disease, because of kidney impairment. Still, I am lucky, in that I have been able to work. (Of course, a major part of that work I can do at home.)

The cough is a concern, to be sure. Whether productive or otherwise, it will tire you out and annoy you no end. My own cough was really bad in the lead-up to both major flares. But it is now manageable. I don't have a fix for you--sorry--but perhaps the treatment will help, eventually....

Al

[flana]

Hi Skip! Sad you are one us! Glad you found this forum! This is a great source for information that you will benefit a lot while to fight the disease. One thing that has immensely helped is to exercise. I started two years ago after I had gained about 60 or so pounds, was to get on the elliptical... 5 mins in the beginning with a break in between. Yes lots of fatigue, helplessness, depression and all the crazy things that you can think of... Today I shed all that extra weight (the freakin belly remains however - sign of prosperity???) and I do 45mins every day with 2 hours on sat and 1 hr on sun. I hope I can continue with this cadence for ever. Clinically I feel fine. I do have terrible body aches in the nights and blood work shows loss or Iron/Ferratin, taking supplements to counter...

Hope you feel better soon...

[skipper]

that is hopeful Anne yesterday was a down day for me and then there was a fire here and that complicated my breathing, your advice is helpful skip

[Happy Camper]

I have been in remission for a year and a half. Most days I feel pretty good and have energy. At night time I start to feel fatigued. But I also have 3 small children I chase around all day so not sure if its from Wegeners or the kids. I was hoping once I went into remission I would feel completely "normal" again, but I don't think I do. My biggest complaint these days is pains in my hands. The doctors are telling me it might be RA??? Could I really have both? Lets hope not lol!!!

[flana]

Hi happy camper... Yes it could be the wg or meds or ra better to get diagnosed. I have terrible aches in the limbs every night and I have not been able to figure out why. Theories are it could be a reaction to imuran, it could be the low ferratin count or it could simply be RLS.

Whatever it is do address it with your rheumi or your internist.

[mishb]

I have been in remission for a year and a half. Most days I feel pretty good and have energy. At night time I start to feel fatigued. But I also have 3 small children I chase around all day so not sure if its from Wegeners or the kids. I was hoping once I went into remission I would feel completely "normal" again, but I don't think I do. My biggest complaint these days is pains in my hands. The doctors are telling me it might be RA??? Could I really have both? Lets hope not lol!!!

Hi Happy Camper,

Unfortunately it can be both. I have WG, RA and another called Mixed Connective Tissue Disease - they are all basically an overlap of each other in regards to joint pain and vasculitis.

Speak to your rheumy, they may be able to give you something for it.

[skipper]

thanks Rudi Until I found this site I was feeling isolated. My doctor was dismissive, Said he never heard of it and didn't seem to care, He upset me so much but specialist said they see it all the time and it is treatable. I had symptoms for so long but my doctor said it was a bad virus, I knew it was more and had really given up. At least I have found some hope here. Thanks Skip

[Happy Camper]

They ran a bunch of blood work and my CCP AB came back positive at 47 (its a test for RA) my RH factor was negative. I guess in early RA the RH factor is negative alot of the time? I see Dr. Langford, she said that bc the CCP AB test is new they don't know if Wegeners could make it positive. She said Wegeners could also cause hand pain, but I thought if I was in remission I shouldn't have symptoms?
I'm on only 75mg of Imuran Daily-thats it. Maybe its the Imuran causing the hand pain. In October I will be in remission 2yrs. and I have the opition of going off all meds. I'm very nervous about it, not sure what I'll do yet.

@ Skip glad you found some other Weggies here and some information!

[delorisdoe]

[QUOTE= I guess in early RA the RH factor is She said Wegeners could also cause hand pain, but I thought if I was in remission I shouldn't have symptoms?
![/QUOTE]


LOL back when I used to have wegeners I would tell myself that same thing often.

[pberggren1]

LOL back when I used to have wegeners I would tell myself that same thing often.

And when exactly did you get rid of it?

[delorisdoe]

And when exactly did you get rid of it?


Two Thursday's ago

[drz]

Two Thursday's ago

Are you kidding or do you mean you are now considered to be in remission and therefore the GPA is not active right now??:unsure: :confused1:

[delorisdoe]

Are you kidding or do you mean you are now considered to be in remission and therefore the GPA is not active right now??:unsure: :confused1:

Ya I am kidding I guess. Whenever I go to the specialist and I'm feeling good I tell him we are done and I no longer have wegeners. I have not had a flare of any sort for a few months now.

[pberggren1]

You have such a neat sense of humour Leigh. Keep it up!

[delorisdoe]

Are you kidding or do you mean you are now considered to be in remission and therefore the GPA is not active right now??:unsure: :confused1:

truth be told I am the only other person on this board besides you that has GPA. I no longer want wegeners. GPA sounds less interesting and I like that

[pberggren1]

Ya, maybe I'll trade in the Wegs for GPA as well. Might even get some cash back.......lol.

[Al]

I think drz prefers GPA as well. I'm agnostic about the name, but I think "Guppies" has less poetic appeal than "Weggies".

Al

[skipper]

sorry I don't know what GPA is. I have so little knowledge but picking it up here, skip

[Dryhill]

sorry I don't know what GPA is. I have so little knowledge but picking it up here, skip

Skip, GPA is the new fancy all singing all dancing name for Wegners. Like Al I am not in favour of the name change as I do not want to be a Guppy which I thought was a type of fish. Oh by the way just think of your tiredness as a way of getting real value out of your favourite chair.

Phil let me know if you get any money back, if you do I will switch disease as well. :wink1:

Jim

[KathyB]

Hi Skip -- welcome to "our" forum (you are one of us!). It's always filled with lots of good info, including stories and experiences of members. You will learn a lot. As everyone has stated, being tired is one of our symptoms. But realize we all have different experiences (from diagnosis to treatments to symptoms). this is one interesting disease! Good luck and keep sharing!

KB

[Al]

sorry I don't know what GPA is. I have so little knowledge but picking it up here, skip Skip, "GPA" stands for "Granulomatosis Polyangiitis (Wegener's)". The honorific is supposed to be dropped after people get used to GPA. Herr Wegener was apparently a big-time Nazi, which partly explains the impetus behind the new name. The other reason is to make sure the diagnosticians appreciate the family associations with other diseases in the same family: MPA (Microscopic Polyangiitis) and CSS (Churg-Strauss Syndrome). The latter is supposed to become Eosinophilc Granulomatosis, though in the literature it is often called Allergic Granulomatosis. To my mind, however, Guppies, Muppies, and Chuggies don't have a nice ring. To me, we are all Weggies; regardless of the names, Shakespeare, they all stink.

Al

[pberggren1]

When I went to trade it in I had to pay money so I just walked away.

[drz]

When they wanted to change the name of Wegener's granulomatosis why didn't
they do something more useful and helpful like get rid of the worthless term "limited" which says nothing about severity, only what organs haven't been attacked yet. They could have come up with something more descriptive and helpful to us, couldn't they.

I hated Wegener's disease so badly that I was happy to trade it in for GPA since that sounds more like an academic problem that I might handle more effectively. It was also much easier to type and spell which I like. But my doctors notes in my charts still say Wegener's granulomatosis so now I have two bad diseases.

Phil, if you traded in the name in first 60 days there was no charge, at least at my clinic. Mayo made me sign a new consent form to be in their longitudinal study for GPA, did you?

[annekat]

I find it awkward to tell people I have Wegener's Granulomatosis. Their eyes pretty much glaze over. GPA is easier to say but wouldn't mean any more to them. To me, GPA means grade point average. I'm leaning toward just telling them I have vasculitis. Then they can google it if they want to know what it is.

Anne

[Trudy]

I find it awkward to tell people I have Wegener's Granulomatosis. Their eyes pretty much glaze over. GPA is easier to say but wouldn't mean any more to them. To me, GPA means grade point average. I'm leaning toward just telling them I have vasculitis. Then they can google it if they want to know what it is.

Anne

I'm with you, Anne. Everyone seems to easily understand vasculitis, or it sounds familiar to them. I taught for 23 years, so to me GPA will always be grade point average. For the sake of comradery I think Weggies is the best option. I also have Lupus and I hate their nickname of Lupies....sounds like you are doped up....then again with Pred....maybe it fits.

[annekat]

Another thing: I have been telling people I have an autoimmune disease, but I'm thinking autoimmune disorder might be better as it sounds less like something contagious. Although they should know it is a serious and incurable disease. Most are OK with it.... I do occasionally say "it's not contagious". I can only think of one woman who seemed nervous and didn't stick around long.... I think she thought I had AIDS, which of course, even if I had, she wouldn't have caught by talking to me.

Anne

[Al]

Another thing: I have been telling people I have an autoimmune disease, but I'm thinking autoimmune disorder might be better as it sounds less like something contagious. Although they should know it is a serious and incurable disease. Most are OK with it.... I do occasionally say "it's not contagious". I can only think of one woman who seemed nervous and didn't stick around long.... I think she thought I had AIDS, which of course, even if I had, she wouldn't have caught by talking to me.

Anne

Good point, Anne. I've had people ask me, "...say, you aren't contagious or anything, are you...?" These things take a lot of explaining, which grows tiresome.

Al

[Al]

I'm with you, Anne. Everyone seems to easily understand vasculitis, or it sounds familiar to them. I taught for 23 years, so to me GPA will always be grade point average. For the sake of comradery I think Weggies is the best option. I also have Lupus and I hate their nickname of Lupies....sounds like you are doped up....then again with Pred....maybe it fits.I think, with that pronunciation, most of us pred-heads would be with you, Trudy!

Al

[delorisdoe]

I just dont tell people. I dont care one bit what its name is...that for me is the easy part of this. gpa wegeners whatever.

[annekat]

I just dont tell people. I dont care one bit what its name is...that for me is the easy part of this. gpa wegeners whatever. Yeah, what business is it of theirs, anyway? When I have bouts of coughing and nose blowing in public, I do tell people it's not a cold and leave it at that.

Anne

[skipper]

I hate the coughing in public. But like you there is nothing I can do but say it's not contagious. The productive cough just started two weeks ago and I wonder if it ever gets better. So many questions.. My head spins with it all and if it wasn't that I knew you were all here dealing with it too I don't know what I would do How thankful I am to have you and hope I don't bring you down with some of my questions. I know everyone has different challenges. some days it just plain scares me. I was such a healthy active woman and I feel lost her. Skip

[annekat]

I hate the coughing in public. But like you there is nothing I can do but say it's not contagious. The productive cough just started two weeks ago and I wonder if it ever gets better. So many questions.. My head spins with it all and if it wasn't that I knew you were all here dealing with it too I don't know what I would do How thankful I am to have you and hope I don't bring you down with some of my questions. I know everyone has different challenges. some days it just plain scares me. I was such a healthy active woman and I feel lost her. Skip Good to know you are a woman, Skip! Yes, I think it will get better. Mine did. It can change according to variations in the disease and also seasonal or environmental irritants such as allergens and dusts. Wegener's is a complicated disease with many variations and changes, so there will always be lots of questions. No, you don't bring us down with them! I know it is scary. I'm less scared than before. I know I'd be a lot more scared without this forum, even though I've read of some pretty severe cases on here. But being in the dark is scarier than knowing some things and having people to relate to on all of this. I know I am much healthier and able to be much more active than I was a year ago when I was really in bad shape. So I think that will happen for you, too.

Anne

[skipper]

oh Anne you have no idea how encouraged I am by your words. Yesterday I was all gloom and felt so solaated. I am in a convalescent home fr 2 weeks and worry about boing home. I had been so ill there and tne memory lingers. I just needed a ray of hope. I live in a small Ontario city so not sure of resources yet. it will be a journey with all of you s guides.skip

[KathyB]

Hang in there, Skipper! It's a bumpy road with lots of twists and turns, but remember what's at the end of the yellow brick road!! We are here to walk with you!!

KB

[Lightwarrior]

oh Anne you have no idea how encouraged I am by your words. Yesterday I was all gloom and felt so solaated. I am in a convalescent home fr 2 weeks and worry about boing home. I had been so ill there and tne memory lingers. I just needed a ray of hope. I live in a small Ontario city so not sure of resources yet. it will be a journey with all of you s guides.skip

This group will provide you with valuable companionship. In the middle of the night when most people are sleeping, we pred heads (at least this pred head) ponder the meaning and the lesson needed to be learned from this all. Ultimately, I know that I can jump on line into the forum and find that I am not alone. Even if I just read posts, I realize that there is such an intelligent, caring and diverse collection of people in this forum who are all struggling on some level with the same questions, emotions and challenges. You are save here to rant, to express fear and share your joy's. I am sorry you feel alone, you are not and I am glad that you found us.

[skipper]

hi good to hear this. good meaning friends say how awful this is for you and that brings me down. i too just read posts over and over and find hope. i will get braver and ask more questions in time. skipper

[drz]

Another thing: I have been telling people I have an autoimmune disease, but I'm thinking autoimmune disorder might be better as it sounds less like something contagious. Although they should know it is a serious and incurable disease. Most are OK with it.... I do occasionally say "it's not contagious". I can only think of one woman who seemed nervous and didn't stick around long.... I think she thought I had AIDS, which of course, even if I had, she wouldn't have caught by talking to me.

Anne

I had one lady freak out when I got too close to her "DON'T TOUCH ME" she must have thought it was very contagious.

[drz]

I had one lady freak out when I got too close to her "DON'T TOUCH ME" she must have thought it was very contagious.

I like using this answer I have a rare incurable autoimmune disorder that affects my small blood vessels. Some times i add this comment if they seem real interested "It took my hearing in one ear, balance, most of my kidney function and half my lungs and makes me real tired". Then they know it is serious, not contagious.

Next question is how did you get it? Answer no one knows for sure but it seems related to toxins like pollution and we must have a lot here in our area we have a coal burning power plant, had a garbage burner, our drinking water is from the river and is water contaminated with pesticides and agricultural runoff) since we have a larger number of cases than what one would expect for a rare disease. Just the number of GPA cases I know for sure in our town gives us a ratio of one case per 2000 population plus lots of other autoimmune disorders like MS. On our block 80% of homes have someone with cancer too so maybe not a healthy place to live????

[drz]

oh Anne you have no idea how encouraged I am by your words. Yesterday I was all gloom and felt so solaated. I am in a convalescent home fr 2 weeks and worry about boing home. I had been so ill there and tne memory lingers. I just needed a ray of hope. I live in a small Ontario city so not sure of resources yet. it will be a journey with all of you s guides.skip

I spent two months in hospitals and three months in rehab convalescent home before trying to return home but like one co worker who got Wegs before me said" If you can survive the treatment, things do get better" And they have.

Just heard about another Wegener's case from my pentamadine therapist this week. Her nephew was a a strong healthy construction worker in his 30's. Got Wegs and needed to be intubated for three weeks and almost died, but three months later is going back to work part time so younger healthier people can bounce back pretty quickly sometimes. Hope you do well in your recovery and rehab program too.

[vdub]

Hey, Skip, welcome to the forum.... What people go through varies quite a bit, but as many have already stated, you will gradually feel better, but not as good as you did before getting sick if you can remember that far back. It was two years before I was dx'ed and two years since being dx'ed -- frankly don't remember what it felt like to not be sick. Ups and downs for me and a lot of being tired.

Right now I'm tapering of codeine. I've been on it for 22 months and decided it was time to see how much I really hurt. I'm in my 2nd week of a 3 week taper and I definitely have withdrawl symptoms. I'm hoping I'll be a clean marine in another couple weeks....

Best of luck to you. You will have good days and bad days... Lets hope most are good.....

[Sangye]

Hi Skip, nice to meet you. It's a huge transition to be diagnosed with something like Wegs, especially if you were healthy before. Our group is wonderful, as you've already discovered. Glad you're here. :smile1:

[skipper]

I am learning a lot about this disease and ahead of my primary doctor who doesn't seem interested. I had such dire symptoms for so long and he just said it was an overwhelming virus in spite of the fact I could Inot eat and was losing a pound a day. My kidney results were scary as were wbc, still he wrote prescriptions and patted me on the head as though I was losing my mind, My eyes were so swollen and I was so weak that my son took me to hospital. the first doctor that saw me said I was classic Wegeners and had all tests done in days. I was really sick by then. I am in a convalescent home for another two weeks and then need to figure out what specialists I need and how I can get back some strength. my husband died three years ago and I was still adjusting to that loss, I had been his caregiver for several years so thought I was just tired, I will be dependent on the information here. as I have said before my dull hearing is bothering me a lot. Weird because I worked with the deaf for years and can read lips a bit better than most, I just hope it clears some more, A day at a time right. Skip

[Sangye]

Skip, where are you located?

[skipper]

in a small town north of Toronto Ontario, Canada

[annekat]

Skip, your experience with doctors sounds so typical. I was just in the hospital overnight for tests, and it was there that someone, my overseeing internist, finally suggested Wegener's, after 2 or 3 years of seeing an ENT and pulmonologist for sinus, ear, and asthma-like problems. Since my diagnosis, most of my knowledge of the disease has come from this forum. So I'm glad you are continuing to hang out here on an active basis! Keep on posting.

Anne

[skipper]

I guess that is common but it is concerning how much damage is done before diagnosis. My ears are so congested and don't seem to be clearing, i feel i am living in a hollow tunnel. i called today to see what help was available at home. so frustrating dealing with the system, i just had my son bring my car here so i can at least get out a bit before i return home, the worst part last month was no appetite and the loss of weight. i guess things are improving but it is hard to see that light at times. i come to this site so often just to know i am not alone. skip

[annekat]

I guess that is common but it is concerning how much damage is done before diagnosis. My ears are so congested and don't seem to be clearing, i feel i am living in a hollow tunnel. i called today to see what help was available at home. so frustrating dealing with the system, i just had my son bring my car here so i can at least get out a bit before i return home, the worst part last month was no appetite and the loss of weight. i guess things are improving but it is hard to see that light at times. i come to this site so often just to know i am not alone. skip My ENT was very apologetic about my delayed diagnosis. If it had been caught earlier it might not have gone into my lungs, I might not have gotten a saddle nose, and my hearing might have been saved. But it is common because WG is such a rare disease, and so many people have recurring sinus infections with related ear problems. Also many have allergies which contribute to all this, and my allergy test showed many allergies. So he naturally put me in that category instead of suspecting WG. I hope there will be a trend for all ENTs, lung docs, and docs in general to be trained to be more aware of WG and other vasculitis and test for it more as a matter of routine. Do remember that things will get better and you may not end up with the same lasting problems I and others have. Some do get their hearing back.

Anne

[drz]

in a small town north of Toronto Ontario, Canada

Do you go to Mount Sinai Hospital in Toronto for care? A doctor there Katherine A. Siminovitch, M.D. is involved in a a research study on Wegs and might be a good resource for you.

[delorisdoe]

HI skipper...I am live in a small town south of toronto-I think its south.

[skipper]

have you contacted mt. sinai re the research. i will talk to my doctor about it as it is hard to co ordinate treatment in a small town. i try not to think about it too much but sometimes it is just so overwhelming, i am in convalescent home now but worry about going home on my own, i was so weak before i could not function, i am looking for support but it is expensive and hard to access, oh well perhaps my energy will return soon, i don;t know what is south of toronto except lake ontario. skip

[delorisdoe]

well toronto is north from me so I just assume i am south of toronto...I am close to hamilton. I will not me contacting mt sinai for anything

[skipper]

you are lol once lived in hamilton as a child. I have a direction problem

[delorisdoe]

I have one as well. Anytime I leave hamilton I call it north...london, parry sound, they are all north to me. I dont know the other 3 directions at all

[pberggren1]

Noth to Alaska.

[skipper]

very funny do you think it is all part of wegeners lol. they told me my car was parked in east lot and it will take me all afternoon to figure it out, guess i will just press my key finder and hope it finds me, skip

[annekat]

very funny do you think it is all part of wegeners lol. they told me my car was parked in east lot and it will take me all afternoon to figure it out, guess i will just press my key finder and hope it finds me, skip I lose my car, too. For me I can't tell if it is Wegener's or advancing age. Probably a combination of both.

Anne

[Dryhill]

My ENT was very apologetic about my delayed diagnosis.

It amazes me how many ENT doctors do not seem to know anything about our fun disease. Surely it is about time that they are taught to think of Wegner's.

Jim

[annekat]

It amazes me how many ENT doctors do not seem to know anything about our fun disease. Surely it is about time that they are taught to think of Wegner's.

Jim
I agree. I am hopeful that they soon will be.

Anne

[Dryhill]

I find it awkward to tell people I have Wegener's Granulomatosis. Their eyes pretty much glaze over. GPA is easier to say but wouldn't mean any more to them. To me, GPA means grade point average. I'm leaning toward just telling them I have vasculitis. Then they can google it if they want to know what it is.

Anne

To help control the amount of germs floating about in my taxi I purchased an air filter that sits on the dashboard and plugs into the cigerette lighter. This of course prompts nearly everyone to ask what it is, my stock answer is that it is an air filter because I am asthmatic and allerergic to various things (which is true). If I think the customer is half way intelligent I explain that my immune system is doing its best to kill me and that it has damaged my lungs and sinus and was just about to have a go at my kidneys, that normally makes them realise that I am quite ill (sometimes it even prompts a larger than normal tip).

We have a number of gay couples living in the area and all of them always ask how I am and how treatment is going. They seem to be more concerned about their cabbie than most of my customers, perhaps it is the big AIDS scare that gays have had to put up with.

Jim

[annekat]

Driving a cab, it would certainly be an issue. Good to know such small, vehicle-friendly air filters exist.

All the gay people I can recall knowing have been very kind, caring, and compassionate people. Not to say that many others aren't, too.

Anne

[Natalie]

It amazes me how many ENT doctors do not seem to know anything about our fun disease. Surely it is about time that they are taught to think of Wegner's.

Jim
this really suprises me as well , Especially when all your doctors seem to hang on ENT's word for the next step , they have no clue IMO . still a very big part of our care but Geez come on guys . The other weggies roller coaster :rolleyes1:

[Natalie]

Hi Skip , Just saying hello , I pop in every now and then To catch up on info and others progress , All the best . plenty of others here to help , I was very scraed When I first when Home from Hospital when I was diagnosed. I feel for you and hope you can find some inner strength to get you threw xx Nat

[annekat]

They see people with sinus infections and ear problems all the time. They should know about any disease such as Wegs that mimics and manifests in these symptoms. They should automatically test for WG in anyone with these recurring problems.

[Natalie]

I totally Agree with you !

[skipper]

thanks Natalie, i needed a lift today. i was so tired i could barely function and i always had so much energy, i can hear okay but i feel i am talking in a tunnel and the cough has returned, overall a day of adjustment. it helps to know that there are others out there meeting the challenge. you have had to deal with this a long time so you must have found the inner strength. thanks for thinking about me. Skip

[drz]

They see people with sinus infections and ear problems all the time. They should know about any disease such as Wegs that mimics and manifests in these symptoms. They should automatically test for WG in anyone with these recurring problems.

The brochure that the Vasculitis Foundation puts out on Wegener's which is what Mayo clinic hands out for patient education info, also states that for most people the initial symptom is like a cold that hangs on and persists despite usual therapeutic measures. So it seems they should definitely put GPA on their radar for these cases, doesn't it? My ENT did recommend a biopsy for my nasal area but before I could get it done it flared up out of control and it was confirmed with a kidney biopsy.

[mishb]

It amazes me how many ENT doctors do not seem to know anything about our fun disease. Surely it is about time that they are taught to think of Wegner's.

Jim


Well thankfully my ENT was on the ball.
My GP kept me hanging around trying different nasal sprays and antibiotics for nearly 2 years.
We finally convinced her to write a referral to an ENT and he was the one that gave the diagnosis straight away. Did say, though, that I needed some blood tests and a biopsy to confirm his suspicions.
He informed me later that he knew all about it only because his son, also an ENT, wrote a thesis on it whilst he was in med school. Just proves to me that the newer ones are learning about it.
....thank goodness for that

[Palmyra]

I guess that is common but it is concerning how much damage is done before diagnosis. My ears are so congested and don't seem to be clearing, i feel i am living in a hollow tunnel. i called today to see what help was available at home. so frustrating dealing with the system, i just had my son bring my car here so i can at least get out a bit before i return home, the worst part last month was no appetite and the loss of weight. i guess things are improving but it is hard to see that light at times. i come to this site so often just to know i am not alone. skip

Hi Skip....I am jumping in to say hello. You will find many friends on this site. As you learn more about us, you will learn more about the disease as well. I have a personal philosophy that knowledge, especially involving a chronic medical condition, gives one power. That said, it is helpful to ask for help in the form of an advocate from a loved one, if you have someone available. They can address care and speak on your behalf if you are not up to it yourself. If that someone is not available, you have all of us here! All the frustrations and complications you are dealing with are familiar. Depression can be an occasional fiend one must guard against. If it is lurking, bring it up to your docs and get some help.

Uncaring medical providers should be quickly dismissed. If you have a good vasculitis center that you can get to, even for a one time evaluation and treatment suggestions, it may eliminate much of the stress of feeling insecure. I highly recommend that! They will be very familiar with the disease, and help you with local resources once you get home. I also recommend starting a personal journal. Write down your symptoms, your meds and what each medical provider tells you. Ask for copies of test results, and keep those as well. As you become familiar with the terminology, you will be better able to gage your own condition.

Too much advice for now, but know that many here care!

Keep us posted! :thumbup:

[Marcus]

I can tell you I just got done with a two week snowmobile trip 6 weeks after chemo and fatigue was inevitable, 2000 mg of mycophenolate mofetil (cellcept), and 5mg of prednisone a day and I can feel the lungs getting stronger every week.

[Al]

I can tell you I just got done with a two week snowmobile trip 6 weeks after chemo and fatigue was inevitable, 2000 mg of mycophenolate mofetil (cellcept), and 5mg of prednisone a day and I can feel the lungs getting stronger every week.
A question, Marcus: If you are down to 5 mg prednisone four months after diagnosis, what was your initial dose?

Al

[Marcus]

I was intubated when I was first put in the hospital, but my wife said the gave me a thousand mg the first day, she isn't sure if it was prednisone but it was a steroid. Than it was 100 mg a day until I got the tubes out. Then it was 80 mg while I was on cytoxan.

[drz]

I was intubated when I was first put in the hospital, but my wife said the gave me a thousand mg the first day, she isn't sure if it was prednisone but it was a steroid. Than it was 100 mg a day until I got the tubes out. Then it was 80 mg while I was on cytoxan.

Wow that is a fast taper. Usually they 1000 mg of solumedrol which equates to about 1650 mg of pred for initial dosage when you are intubated. How are your lungs and kidneys now? Great recovery--congratuations. You must be young strong and very physically fit and now ready to enjoy life again.

[Marcus]

At Drz, my lungs were back to normal after 30 days of my intubation, and my kidneys are what took the longest and they are now back to normal as of feb. 19th. I am 39 years old but have always had a very physically active life and I had never been sick up until Weggies hit me and I set goals that my doctors said would never happen. I have reached all my goals but one, the last one is that I will be off my preventive medications by my one year anniversary! Nov. 1st 2012!

[drz]

At Drz, my lungs were back to normal after 30 days of my intubation, and my kidneys are what took the longest and they are now back to normal as of feb. 19th. I am 39 years old but have always had a very physically active life and I had never been sick up until Weggies hit me and I set goals that my doctors said would never happen. I have reached all my goals but one, the last one is that I will be off my preventive medications by my one year anniversary! Nov. 1st 2012!

You sound like a walking miracle that they should study extensively and try to clone. Have any of the doctors mentioned writing up your case history as a study for medical journals? Could you ask your treating doctor about this. Such great results certainly need to be studied and hopefully replicated for others in the future. Are you in the GPA longitudinal study at present?

[Marcus]

I don't know that any of them are writing about my case yet, but I will the next time I see them. I am not currently involved in any study at this time. I have been taking a lot of vacations and living life.

[Al]

I don't know that any of them are writing about my case yet, but I will the next time I see them. I am not currently involved in any study at this time. I have been taking a lot of vacations and living life.
Vacations and living life are great things to do, Marcus. But there are many unusual things about your case, and I think a case study would be beneficial for a lot of clinicians. To begin with, there is the ultra-rapid diagnosis, which, while great for saving major organs, is exceedingly rare. Kaiser is, to its detractors, just factory medicine. But what it does have going for it is salaried doctors--just like at the Mayo Clinic. So doctors can go at a problem as a true team. This, I think, is desirable when there are a lot of widely spread dots to connect: Parallel views on a common set of dots method produces better results than serial views. Then there is the aggressive treatment plan, and your ability to handle it. It is an amazing story that should have have a wider hearing.

Al

[germaine]

Hi Skipper, I sent you a long reply to your enquiry about doctors and contacts in the Toronto area. I hope you got it. Germaine

[skipper]

No Germaine, I didn't get that response. Perhaps I am not looking in the right place.

[onatreetop]

Hi skipper! just reading up on you and your story. As many have said already you are not alone in this rare view of life that we come to share. My first 3 monthes all the docs had me scared sick. lol.....But the path and roller coaster of the giant speed bumb in life we know is weggies gets much better when we are armoured with eachothers understanding of eachother and the beast of weggie. We are all very different yet the same. i was in that horrible dark tunnel of doom then found this special place here. Gathered info and knowledge and became much more sure and in control of the understanding without being scared out of my skin every doc visit. Everyone here, no matter how near or far have saved my sanity and life. Everyday is different and the way i see things is very different. It does change your life and others around you. But everyday I wakeup and standup without falling on my face or behind and i am ready and willing to take on whatever challange or truck that hits me....only because i know tomarrow is another day. Because I am 44 yrs old with 3 teenagers and a 9 year old i wasnt able to enjoy my time with them when i was in the dark. now i look at everyday as a gift and challange. i decided early on after the shock that instead of crying and letting the pain and changes i had to except bring me down i started laughing instead. yes some people think i am crazy but i have never been whatever normal is? that least i dont think so nor my offspring

I also want to thank you for your support when things get to much and i trip and begin to stumble astray. We are all here for eachother. thank you Andrew! in so many ways! :hug3:


Treetop

[mishb]

That was beautifully said tree and so, so true.
We are all thankful, maybe not for the diagnosis we have been given, but for the acceptance we have and also for the friends we have made.

We may all trip up every now and then but what is life without challenges.

........here's to everyone of us for WE are awesome :thumbsup:

[alexciasmom]

welcome and injoy...

[onatreetop]

who couldnt love that angel! I fighy everyday for my quality of life so that I can embrass all of my children. They are my reason for living, breathing and everything. I cant imagine life without them. The husband I am ready to return or trade in. Afraid we have grown apart so much its almost like trying to talk to someone that doesnt hear anything from me and the kids. Was hoping the new O2 would make an impact but not with the husband. The kids are so much more understanding. My 9 year old keeps reminding me that I should be wearing the O2 whenever i forget. They are my reason to do better. They have even started working with me off and on. So now they know when Iam tired and need rest they understand.

[skipper]

I truly appreciate your story. I think I am getting better at facing my fears and not letting myself get ahead of myself. I did too much projecting in the past and as you say we don't know what lies ahead for any of us. You are so young to be facing this. I know I have had it a long time but then ignorance is bliss and I was just having each event treated in isolation. I would like to see more education of doctors to pick up the symptoms but then I am always on a mission. I was a newspaper writer and I am itching to get Wegners out in the public but not quite sure how to do it yet. At least it gives me positive focus. I am so glad I found this site. It has helped me more than any doctor so far. Koodos to each of you and especially those who started the site. You have brought hope to many like me. Skipper

[drz]

Talk with our two PR experts, Cindy and Marta. Both have done amazing things to promote awareness of rare diseases like ours.


I truly appreciate your story. I think I am getting better at facing my fears and not letting myself get ahead of myself. I did too much projecting in the past and as you say we don't know what lies ahead for any of us. You are so young to be facing this. I know I have had it a long time but then ignorance is bliss and I was just having each event treated in isolation. I would like to see more education of doctors to pick up the symptoms but then I am always on a mission. I was a newspaper writer and I am itching to get Wegners out in the public but not quite sure how to do it yet. At least it gives me positive focus. I am so glad I found this site. It has helped me more than any doctor so far. Koodos to each of you and especially those who started the site. You have brought hope to many like me. Skipper

[Victoriaitsnosecret]

Thanks, Phil. I was asking because from reading some of your past posts, it sounds like I may have some similar sinus issues to yours.

Anne

I had a CT of my face. The doctor said I had erosion, crusting and damage to th cartilidge. He did a scope too but sai it was really blocked and couldn't see much. He told me to rinse with the Neli-Med. I can finally breath through my nose again. Anyway my Rhumetoid doc said the medicine should halt progression of further damage. I hope so. My nose is slightly dented and now a little crooked.
Fun times indeed. :thumbdn:

Good luck.

[annekat]

I hope you get by with just the slight dent that you have, Victoria...... not that looks are the most important thing, but it sure adds insult to injury..... If you ever have it fixed, it might be easier than for some of us.