Hello! ~=]

Hello everyone!

Upon waiting for approval, I went through many, many, MANY posts. I feel as though I know some of you. You have no idea how amazing you all are. I'm glad I found a support group for Wegener's (and that one actually exsists!!).

My name is Ashley, I'm 22 years old, from Toronto. My best friend got diagnosed with WG about 2 1/2 - 3 weeks ago, and started steroids + other meds a week and a half ago. This is all really scarey and confusing for us all, as we don't know what to expect. I've been spending lots of time online trying to gather up some information to read, and have been filtering out the garbage I find.

I'm going to try and get him to join this site.

Just wanted to say HI to you all, and that you'll be seeing (...well, reading lol) much more of myself here. ~=]

Thanks again! :o

Sorry to hear about your friend, welcome to this group. They have alot of info that you will find very useful:o All the people here are great!

Best wishs:)

Hi and welcome to the Forum. :)

These are very early days for you and your friend, far too early to predict what is in store. I hope they had an early diagnosis (rare!) and have not suffered too much damage.

It sounds as though you have already had a good look through the posts so will have picked up quite a good picture of Wegener's, but please feel free to tell the story and ask any questions you may still have.

Thank you for the warm welcome Gary & Jack!

I'm going to tell you his story from what I know/remember.. maybe he'll correct me if he ever joins! lol ;)
It all started in April '09, from what I can remember. He had a stuffy nose. Figured it would go away after a few days.. Not so much.
It stayed around for awhile. He would get headache too, but figured they were just headaches. We all get them! He'd have appointments with his family doctor, and she put him on some nasal spray and what not. Later, he went for a CT scan, because he though he had a brain tumor... the headaches got that bad. Everything was clear and fine, yet something was still clearly wrong.
About 2 months ago, he woke up with SEVER pain in his knees. He couldn't walk that morning. His cousin took him to the hospital, and they said it's probably arthritis. He got sent home, and had an appointment with an arthritis specialist. His doctor also made an appointment with an allergiest (sorry, i don't know the terms for these doctors...!), they did an allergy test on him, and he was indeed allergic to Ragweed, cat/dogs and dustmites. We figured, "Yay! That's the cause of all these symptoms!" ...ha!
His right eye then started to swell up, and again, he went to his doctor and she sent him to an optomitrist. They told him to take these eye drops three times a day, and come back in a week. His eye got better with the drops.. but it still wasn't making sense. Anywho, meanwhile, he was waiting for his appointment with a doctor (not sure which one though) at a Mount Sini Hospital in Toronto. That's when he was officially diagnosed with Wegener's. When he called to tell me, I didn't think anything much about it. I figured it was something small, they'd have him on antibiotics, and he'd be better. :rolleyes:
We got into a fight over stupidness not too long after, and didn't talk for almost two weeks. This past Friday, I sent him a text, asking him how he was.. because even though I was mad at him, I still wanted to know how he was. He said he was okay, and that the doctors put him on heavy steroids. I'm thinking to myself, "Steriods? What the heck? For what?", then he told me it was for the Wegener's. An hour later, I was with him, listening to everything that had happened... everything that I had missed. I was worried, ofcourse.. I thought I was cursed. [My boyfriend of 4 years passed away December 31st/07 from a heart attack caused by another rare disease; Pulmonary Hypertension] I couldn't understand why it was happening again, to another person I loved.
Anyways, back to my friend...
So, the weekend went by pretty normal. Saturday night he invited me over, and we watched a movie at his place with his cousin and sister. It was a late night, but it was fun. Then, Sunday evening, he sends me a text telling me he wasn't feeling well. I asked him what was wrong? He said the left side of him was hurting, and the back of his head too. He was starting to freak out. He gets worried REALLY easily. It's not good. So, I rushed to pick him up, and we went to the hospital. They did a million tests on him. Blood tests, ultrasounds on his heart, CT scan on his liver... it just kept going. They put him on an IV of saline, and he said it made him feel better. I guess the might have been a little dehydrated? They ended up keeping him (us) overnight, and had him hooked up to heart monitors. Wow.. we weren't able to get ANY sleep that night. Maybe 20 minutes the most. Everytime the heart monitor started to beep, we'd jump and look. It was crazy. His heart was going CRAZY. It would skyrocket to the 140s, then fall down to the 80s in like a minuet! It was scary.
They let him out Monday afternoon, and said everything looked clear. Thank goodness!
Now, I'm starting to think that I'm not cursed. Maybe G-d put me in his life to show him that he WILL get through this. I've been in a smilar situation before and I'm learning from the mistakes I had made in the past (eg. looking for a support group!).. maybe I'm a blessing in disguise?

Anywho, he's going to New York today to see a Naturalist. Going to see what he has to say on this whole situation, and find out how he can get better without the meds. Anyone every try this? I'm really worried because from what I've been reading, you need a love/hate relationship with the steriods. It's not something you can stop.

Regardless, him and his whole family are worried. I wanted to show him all the websites I found online about Wegener's today, but he just told me he's leaving. Spur of the moment thing, I guess. He'll be back Sunday. He has an appointment at Mount Sini Hospital, Monday afternoon.

He's on (please excuse my spelling): Prednisone, Septra, Methotrexate and Fozavance. Can anyone tell me what these are for? :confused:

Oh yes, he also told me he has Limited Wegener's. This mean they caught it early, right? Please correct me if I'm wrong.

So, that's enough of me rambling.

Hope all is well on each of your end.

:o

It sounds like he had an early diagnosis and has so far avoided some of the more serious kidney and lung involvement. :) However, I must beg you to take extreme care with any "alternative" therapy. None has yet been found and the consequences of making a mistake can easily be fatal. This disease is not to be taken lightly!

The drug regime you describe is fairly typical -

Prednisone - anti inflamatory and immune suppressant
Methotrexate - immune suppressant and chemo type drug
Septra - antibiotic
Fosavance - a drug to slow bone density loss caused by Pred.

You can expect the mix to change as time goes by depending on how well he is doing.

hi ashley.it sounds like your friend is having a hard time accepting his situation.WG is a life changing disease as you will have read in other posts on here.as for the meds i'm afraid they are not going away anytime soon.they are what keep us all alive so please don't let him try substituting them for natural remedies.i'm sure when sangye reads your post she will go into more detail for you.hope to hear from you soon.
john.

Trust me, I know how important these meds are. When I asked him what going away was going to accomplish, he said that he'll be cured. I told him it's not going to happen. There's nothing out there to cure this illness, and if there was, don't you think everyone would be doing it? :p
I told him if he stops his meds, he'll end up blind, deaf, in pain, and potentially worse!! I kinda scared him a bit, but I hope he's opened his eyes, and realized that this isn't something that should be taken lightly.

Haha, I'm glued this website now! :D It gives me so much peace of mind, you have no idea. Thank you all, again, so much!!

:o

As I'm sure you know, the danger is that permanent damage can occur before symptoms show. Renal failure nearly killed me in the early days without anything much in the way of additional symptoms.

what is renal failure? sorry.. still trying to figure things out without having medical terminology cloud my brain lol. thanks!

Renal failure = kidney failure

If you are lucky, you can regain enough function to get by. In my case it was beyond recovery and resulted in me going onto dialysis and eventually getting a transplant :)
That was my life saver, because I was going down hill fast!

how long has everyone had Wegener's for?

thank you for all your help Jack! :)

Hi Ashley

I've been diagnosed for 10 months now and only felt ill just a few short weeks beforehand.

I got to stage 3 kidney failure (scale of 1-5, you usually need dialysis at the top end of 3 into 4, 5 usually means you end up like Jack and need a transplant) but my kidneys have managed to almost completely heal. My kidney function at least is totally back to normal.

I was lucky I got a diagnosis within 2 days and immediate steps were taken to preserve my kidneys, so the damaged tissue didn't have a chance to die and turn to scar tissue so it was able to heal.

If your friend has limited Wegener's then it hopefully won't reach his lungs or kidneys - make sure he looks out for things like blood in his urine and a nasty cough (I coughed up blood which is what put me in the emergency room).

I really hope he faces up to WG and decides to fight the disease instead of the meds needed to treat the disease. He needs to fight but is currently fighting the wrong thing.

Quote:

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Originally Posted by AshleySparklez

how long has everyone had Wegener's for?

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Nearly 25 years.

Hi Ashley,
Welcome to the group! Your friend probably doesn't feel very lucky right now, but all things considered, he's incredibly lucky to have begun treatment with "just" those symptoms. Unfortunately for him, it might make him less likely to take it seriously and more likely to think he can substitute natural remedies for the drugs.

If you look up a thread called something like "Natural Remedies" that was started by Georgia, you'll find info on how dangerous it is to do that. He might want to go away (who wouldn't??), but he could wind up really "going away" if he drops the drugs for natural remedies.

The term "limited Wegener's" can be a bit misleading. It makes it sound like the Wegs can't affect other areas. Really, it just means that it isn't affecting other areas. So it's the same disease, whether one area or many areas are involved. Someone with widespread involvement can be treated and only have minimal or no involvement from then on. Or the reverse-- someone with localized involvement can suddenly develop more widespread problems. This is why he can't be complacent.

Another important thing to mention is that the more he messes with the treatment protocol, the likelier he is to have to start all over again. Just gotta get through it.

I was diagnosed 3 yrs ago after a year of excruciating joint pain. The last 3 months pre-diagnosis, my lungs began to bleed silently (ie, I wasn't coughing up blood). I was nearly dead by the time we diagnosed it. I only have lung and skin involvement. The extent of involvement is not a clear indicator of how it will impact one's life. I've had less Wegs involvement than many others here, but lots of bizarre complications, so I haven't been able to work or do much of anything in over 3 yrs.

Hi Ashley
Welcome to the group! I was just diagnosed in the last few months with WG. I am currently on Methotrexate and Prednisone (plus a TON of other meds for a heart condition). I am hoping to get into remission and be able to get off the prednisone which is not a fun med to be on. The weight gain has been horrible, sweating, eyes are messed up--the list goes on and on. BUT-- I have faith in my doctors and they tell me that I am making progress. It is just a long, slow process. Hang in there--you found a great bunch of people here. They have been very helpful to me and its nice to be able to talk to someone who understands all of this. Tell your friend to be tough and we are all there for him!

Hi Ashley

Im Summer. Im also 22. Sorry to here about your friend. I've had WG for about 6 months now. And Yes the Meds are very important.. i take prednisone and methotrexate now .. and alot of others...:(

Welcome to the forum, Ashley! I was diagnosed in December 2003 (Merry Christmas!), though symptoms strongly support a full-bore flare started in late March 2003 (Happy Birthday, Doug!). By the time they had to drag me to the hospital in am ambulance, I had lung and kidney involvement, the so-called severe form of WG. Jack's comment about limited WG, above, is something all weggies need to keep in mind, especially those with "limited" WG.

Hi Ashley, I was diagnosed in november 2006. Limited Wegs does not mean that sickness is limited but that sites/organs it has affected so far are limited. This can change very rapidly if the appropriate steroid/chemo is not followed. If your friend wants to see what a holistic approach can do, that is OK as long as he understands that he cannot under any circumstances stop his medication or counteract it. Many natural curers tell their clients to stop taking regular medications and that is what scares me.

Luce; I completely agree with you, he is fighting the wrong thing. I'm hoping he'll soon be able to see this... he's currently on his way to New Jersey to see a Naturalist doctor person lol is that even what they're called? haha. I'm also making sure he knows what symptoms to look for, just in case Weggies wants to play stupid game with him. I'm glad your kidneys were able to be saved before more possible damage happened.

Jack; 25 years, huh? You're a fighter!! :) Would you say it's better or worse now?

Sangye; I think you're absolutely right. He's not seeing how serious this illness is. I'm hoping to make him more aware of this when I see him on Monday. Would have seen him tonight, but it was a last minuet thing to go to New Jersey (which is an 8 hour drive from where we are). I'm currently reading the thread that Georgia has created. It's really interesting. I'm also with you 100% when you say, "He might want to go away, but he could wind up really "going away" if he drops the drugs for natural remedies.
Also, when you say "near dead" what were your symptoms?

DuaneHart; What heart condition do you have, if you don't mind me asking? I've also realized that everyone on here is like a "family", really glad (and grateful) I've found this support forum! I shall definitely tell my friend to be tough. I'm going to try to get him on this site!! Hopefully he will! :)

sumsum5587; How have you been coping? I can't even begin to imagine what it's like to be diagnosed with WG. Must be hard, but I believe there's a reason for everything. G-d only gives us what we can handle. Stay strong!!

Doug; What were the symptoms you had before going to the hospital?

jola57; I agree with you. Limited does not mean it can't continue attacking other sites. Also, I'm completly against him stoping his meds. That scares me the most. I mean, if stopping the meds helped, wouldn't you think everyone would have done it by now? I told him that at least, until he's in remission, he's got to not screw around with this. Gotta get this under control first before he tries what else is out there, but even then, I'd still be worried.


I tend to worry a lot. Especially since I've already lost the love of my life. It almost feels as though I'm reliving my situation with him, again with my best friend (who I used to date last year lol). It's hard, but I honestly think, he's going to be okay and G-d put me in his life for a reason! :) Once again, thanks for all your posts everyone!!

Good luck to you in keeping your friend's faith in his current treatment and I agree that sometimes we are ment to be in certain places at certain times

Quote:

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Originally Posted by AshleySparklez

Jack; 25 years, huh? You're a fighter!! :) Would you say it's better or worse now?

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The first few years were very bad, but my medication was sorted out and I gained remision. I then had nearly 20 years of being quite well most of the time with the odd relapse or hospital visit for random infections and the like. During the past few years, the long term effects of illness and medication have caught up with me and I have had to retire. I now have quite a few problems that are probably not going to go away. :(

Quote:

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Originally Posted by AshleySparklez

Doug; What were the symptoms you had before going to the hospital?

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weakness/ malaise (big time!)/ night sweats where I'd have to completely change out my bed, down to the mattress, and change my clothes(fevers- I remember sitting in church, and becoming totally drenched though the sanctuary was neither too hot, nor had I done anything to prompt the sweating)/flu-like symptoms/ had to breathe through my mouth for nearly 10 months because of bleeding, crusting in sinuses (!- of course, I didn't think anything was wrong with me, and that cold medicines would "fix it", and though I was going through cough drops and 220-count boxes of tissues so fast I always bought a couple of each weekly))/blood in my urine, which was almost chocolate colored by the time I was hospitalized (it had a strong, unpleasant smell)/ terrible knee and foot pains that felt like arthritis, though I've not been diagnosed with that/ coughing up blood lumps (looked like banana slugs, those big Pacific Northwest slugs the size of your thumb, perhaps)/ a dry, unproductive cough that wouldn't go away/ eyes looked bloodshot, and a time or two the vessels ruptured, giving me the look of someone hit in the eye/ shortness of breath, which ultimately came down to I couldn't breathe, it took me 1-1/2 hours to climb 13 stairs from the basement, where my shower was to the frontroom, where I collapsed on a sofa and told my father (I was living with my parents at the time, sort of a live-in caregiver-!- who do most of the heavy lifting, driving, yardwork, etc. for them) I didn't think I was going to make it to work that day, would he please call the ambulance. Oh, rapid weight gain because I was going into renal failure, was retaining liquids (I was about 190; by the time I was hospitalized I was 293!). Other than that, I felt just fine! I was one of those people who rarely caught cold, never had major illness, so (to try to understand why it took me 10 months to figure out I was sick in a major way) I guess lack of experience with illness made me think I was just suffering a series of lesser illnesses that "would go away"; I treated them with cold medicine and aspirin. You might say I am fortunate to be able to cast an image in a mirror today! :):) You also might say I completely understand how a person might do all the wrong things to come to a point where he either collapses and is hospitalized, or just crawls off in a corner and dies. :eek:

Wow.. those are intense.

I have another question that should probably be in the Medication section of this site, but knowing me, with all I have on my mind, I'd forget about mentioning it to my friend.

I was wondering, does anyone have any chest pains as side effects to Prednisone? I've read through, but I haven't noticed anyone mention that?
The reason my friend and I went to the hospital in the first place on Sunday is because he had chest pains. Now, he just texted me (he's still in New Jersey, no access to a computer at the moment)telling me that he still has it.. and was wondering if that was one of the side effects of the steroids? I checked online quickly while I was at work, but couldn't find anything. :confused:

I thought I'd ask you all first, before assuming it was anxiety?

Thanks again!

One more thing, I almost forgot to ask!!

My friend has his appointment at the hospital on Monday... what are some general Weggies questions you think I should ask? I want to be as informed as possible, but my nerves seem to be getting the best of me lately! :(
Anywho, just in case I blank out (which will most likely happen), I'd like to create a list of questions!

Anything would help!

Thanks! :o

Quote:

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Originally Posted by AshleySparklez

One more thing, I almost forgot to ask!!

My friend has his appointment at the hospital on Monday... what are some general Weggies questions you think I should ask? I want to be as informed as possible, but my nerves seem to be getting the best of me lately! :(
Anywho, just in case I blank out (which will most likely happen), I'd like to create a list of questions!

Anything would help!

Thanks! :o

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Go to http://vasculitisfoundation.org/ and look for the section on FAQ of the newly diagnosed. It is extensive and, I think, will serve well for this first round. I might add, it may help you with your anxiety: as someone helping a weggie, a caregiver possibly in future depending on degree of WG mpact on your friend, you need to mind your own health! Slow down, take those deep breaths, stay calm for your friend, and share what you learn from this forum and the resources we recommend with him.

Well, Ashley, I had a stent put in my heart in May of 2008 because of a blockage in the Left Anterior Decending artery. Since I had that procedure done it seems that I have been going down hill. I was in remission from Crohns Disease for 12-13 years and came out of remission from that in August of 2008. Now, the diagnosis of WG--I can't help but think that it is all related. Hopefully your friend has good doctors. My phrase that I always use is "things will get better--I ain't dead yet!"

Hey Duane, looks like you and I are in the same boat with the heart probs. The only diff is I haven't started going down hill yet.

Ashley, I get chest pains and spasm's in the throat quite often and the doc tells me it is nothing so, I'm going to go see a gastro doc that I know and see if he can find anything then an ENT after that if things don't get better.:rolleyes:

Ashley, I don't think chest pain should be ignored or automatically attributed to drug side effects. It isn't a side effect of pred, anyway. He needs to mention the chest pain to the doc and make sure something is done to properly assess it. There are a number of things it could be--Wegs outright or Wegs-related.

Doug's suggestion for VF website questions is great. Also, look on this site under Medications, Doctors, etc...-- there's a "sticky" called "Tips for Dealing with Doctors" It'll help you stay calm and get all the info you need.

Quote:

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Originally Posted by Gary

I get chest pains and spasm's in the throat quite often and the doc tells me it is nothing

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In my experience, that just means that he does not know what is causing it, but doesn't like to admit it. :mad:

Yep, you are right. He is acually a pulomonary doc that's why I'm going to see the others. He is very good though. He has been seeing 14 other Weggies which I see is alot for the surrounding areas.

hey, im new and i didnt really know what to say to get involved..
ermm.. im 16 and i was diagnosed with WG in April
not sure what else to say..
:)

Hi Stephanie,
It's nice to meet you. Wow, 16. How are you dealing with having Wegs?

You can tell us your Wegs "story" if you like-- how it started, how you got diagnosed, what kind of treatment you're doing, etc.... You can reply here, or go to the Home page and start a new thread. You can also just jump into any conversation and put your two cents in!

There are several other young Weggies who have joined recently. :)

Welcome to the forum Stephanie! You did exactly what you need to do: introduce yourself! Like Sangye says, give us a bit of you history with WG, and finish up with how you are doing now, and ask any questions you might have that are on your mind or bothering you. Also, spend some time going through the old postings. They, no doubt, will answer some of your questions, bring up others, and give you a sense of how the forum works. Don't feel uncomfortable or think you have nothing to add to the forum: each of us has a different experience with the disease, doctors, family responses, etc.

Hello everyone!!
Sorry I've been so MIA this week! Been swammped with a billion and ten things. Hopefully things will slow down by the weekend! Hope you're all doing well! ps. Welcome Stephanie!! :o

Ashley,

Thank goodness that your friend has someone like you who cares. WG..or as we call it here our new BFF...is well...ummmm.."horrible". But on the bright side most, actually many of us survive it and move forward and live a wonderful life with family and friends. This does this not mean we don't have our setbacks..WE DO!!!!

But for the most part...what really keeps us going is the support from family, friends like you, this Wegener's Forum and "Escape the Room" a game which is a {ohhh well maybe a story for another day}. :D

:eek: AAAAAHHHH! Escape the Room! I just thought about it last night! I forgot I was still in The Room. I've grown to like it in here. Very quiet.

Is that u still in there Sangye...you know winter will be upon us, time to hunt for food. You can always go back in later,,hahahahahha :eek:

Yes, I imagine I'll grow tired of snacking on the foam inside the briefcase. I'm sure there's a big pile of food behind the alleged third panel. No, no....look how it's pulling me in again. I will NOT hit the "Continue Game" button. I.WILL.NOT.

Barley's looking very tasty - fancy a rabbit and foam stew Sangye?

We might not be able to get out of the room but I'm sure we can figure out dinner...

Weggies will always figure out dinner! :D:D

Quote:

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Originally Posted by Luce

Barley's looking very tasty - fancy a rabbit and foam stew Sangye?

We might not be able to get out of the room but I'm sure we can figure out dinner...

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Barley is giving you a hungry look, too, Luce!

(Shhhhhhh! The rabbit said not to tell her, remember?)

(So you are planning cous cous with steamed Luce? You and Barley, I mean?)

Actually it would make sense for me to be sacrificed - the meat on me would keep Sangye and Barley nourished for at least a year!

...as Arnie from Terminator would say...GET AUT NOW!!!!!!!

Sangye I dare you to hit continue...just dare you!

And Barley, rabbit paella sounds appealing, actually very tasty and be very careful with your mama Luce, she has the evil hungry eye look.

I see Richard has found a copy of "How to Use Reverse Psychology to Change Your Life!"

And Luce, I think you're safe. I could use some uh, prolonged fasting....

Thanks for the giggles, you guys. :D

paella....yummyyumyumyum.......paella ala Barney.....mmmm! And low fat, too!:)

Richard, thats a permanent look when you're on pred!

In deference to Luce I won't say how good a r.... baked with prunes and oranges tastes. I just don't know about the low fat and r.....

Maybe you could put the recipe in and refer to the protein as "that meat which cannot be named". Sounds good! Dressed out, it always reminds me of what a cat might look like, um, "nude".:D

Ah just take a look at the hairless cat, prett nude if you ask me.