To everyone **PLEASE READ**

To new people,

First, welcome to the Wegeners-Granulomatosis.com support forums!

We’re happy to have you here!

Please introduce yourself! Let us know where you're from, how long since you've been diagnosed, how you're doing right now and anything else you'd like to say by way of introduction.

If you have any questions, Moderators (mods) and Administrators (admins) will be glad to help. All the mods and admins suffer from WG too so we can relate :-) Mods and admins can be identified by their usernames being a different colour from everyone else. Also, if you're wondering how to interact with this forum, you can find an FAQ here.

There is one central rule we have here that we all must abide by. It's simple. Treat each other the same way you would like to be treated. In other words, be nice to each other!

If you're confused about which category to post in, don't worry! No one ever bled to death from posting in the wrong area :-) If it needs moving to a more relevant area then one of the moderators or admins will do it. Above all...don't stress. Again, if you have any questions, just ask one of the mods/admins.

We really love our members, really! However what we don’t love, is spam.

Spammers will not be tolerated. Period. Spammers will be banned.

That's it! Please enjoy your stay and I hope this message finds you well!

Andrew- I just discovered that Stickey isn't a member, but that bulletin board I suggested the site needs! I'm not certain, but I think I tried to befriend "Sticky" earlier!

Sticky says thanks, despite not having the ability to post :D

Also everyone please note that you can now click on the demon rabbit at the top of the page and get all the new posts rather than scouring through each section. I'll make it tidier soon but thought it would be a good feature, particularly seeing as I miss posts all the time!

Edit: There we are, demon bunny now cleaned up and looking pretty. Luce, you have created a monster. Well done! :D

It's nice to know I've made my mark!

This is the first post I read this morning, and I'm just splitting my sides laughing. What a great way to start the day! Luce! You're famous! Like Pasteur and Marie Curie, your discovery will be recorded in the annals of medical history. Andrew-- I think you should relocate to Maryland. This state needs a sense of humor.

I was wondering if anyone knows if there is a guideline for how long you can expect to take prednisone. I believe that taking it makes keeping my emotions under control rather difficult. That is not great in my line of work (lawyer). Not a great idea to be so angry. Seems like either I'm angry, sad or pretty depressed.

This could be because I got diagnosed on 4/2/09.

I want to know if I will hear OK again and not walk like a drunken sailor. I want to know if I will ever get to be me again. I want to be able to walk my dog and walk into a room and hear what is happening in all of it. I just want to be regular again.

Please excuse the whinning. It was a rough day for me.

Also I don't understand about threads and who receives what I write. Could someone explain.


Shannon

oh shannon i really feel for you.WG is a life changing disease.as for pred there is no way of knowing how long you will need to take it.everyone is different, i have been on it for over two years some have been on it for longer some less.i know what you mean about it emotionally i've swung from being a pitbull to crying like a baby at the end of marley and me.i take it from your comment about walking your dog again that you you are suffering from fatigue.if so i know exactly what you mean,we have two dogs and it really hurts that i am unable to walk them due to the fact that after fifty yards i'm ready to collapse.two years ago we were camping in scotland and walking the hills now i can barely make it to the nearest shop.i'm sorry but you're going to have to find a new regular.with WG the regular you knew is no more.you will need to try an adapt and know your limits.don't try to be like you were before because it will not work and you will just get more frustated.there are many people on here who are a lot wiser than me so please come back with any questions or if you just want to have a rant at the world that's ok.we've all done it so feel free.you're not alone.
john.

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Originally Posted by STW

I was wondering if anyone knows if there is a guideline for how long you can expect to take prednisone. I believe that taking it makes keeping my emotions under control rather difficult. That is not great in my line of work (lawyer). Not a great idea to be so angry. Seems like either I'm angry, sad or pretty depressed.

This could be because I got diagnosed on 4/2/09.

I want to know if I will hear OK again and not walk like a drunken sailor. I want to know if I will ever get to be me again. I want to be able to walk my dog and walk into a room and hear what is happening in all of it. I just want to be regular again.

Please excuse the whinning. It was a rough day for me.

Also I don't understand about threads and who receives what I write. Could someone explain.


STW

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All members can read and comment in this forum. Some have created alias for purposes of the forum, others have used their names. Also, anyone who finds this forum can read it, but, unless they register, they can't add comments.

ALSO, and this may have a great deal of meaning to you professionally, anyone who Googles your name can pull up your comments, read the forum. Even if you use an alias, people clever enough to snoop may be able to figure out who you are, etc.

I don't know that you don't want to backtrack, re-register under an alias, and see if Andrew, the Webmaster, can't delete your name.

As for your initial entry, you can edit it. Specifically, you can remove anything you feel might be detrimental to you professionally, by selecting it and hitting the delete key.

"Threads" and a series of comments linked by a common thought (thread!), simple enough. I'm still working through that myself. I'd suggest going to the Home Page, selecting each topic, and reading through them.

I don't want to be self-promoting, but I just learned how to YouTube, and three of the videos have to do with the impact of Prednisone on you (certainly me). Two are based on a little notebook I call my "krazy book". If you watch the videos (links are in the section identified as "I got a new webcam today", I think it is, third topic from the bottom- just double-left-click on them) I posted on You Tube, some of your answers can be found.

Also, I recommend you Google Vasculitis Foundation. It's another place you can find lots of information, from the patient's point of interest, that many of us touched on when we were at your stage. In the meantime, this this the place for you to unwind, if that is what you need. We've all been through what you are experiencing. Some of us are still in the Prednisone stage (not me, thank God!), so you will have plenty of sympathetic readers whotruly, know what you are going through.

Odd things are happening on this site tonight: the quote was in the reply box, and the reply box was open when I came to this site. Somehow, my response was duplicated- ignore this reply!!

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Originally Posted by Doug

Odd things are happening on this site tonight: the quote was in the reply box, and the reply box was open when I came to this site. Somehow, my response was duplicated- ignore this reply!!

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It's the Dougflicker virus :D

Hi Shannon...
Have a read through some of the topics here. They should make things clearer.
Wegener's Granulomatosis Disease Support Forum - FAQ: Board FAQ

As well as what Doug said, each time someone replies to a thread, you'll probably get an email. This is a notification email only to let you know there has been a reply or a new thread. Come back here and view/reply by clicking the link in the email or coming straight to the site via your browser.

You can also email me if you have questions or are having issues with the site :)

welcome Shannon,

The best advice I got from someone on this site was to be accepting of my "new normal". Once I realized that was the way it was going to be, I have felt much more on the positive side. Being positive helps in how you feel overall. Please use us as a sounding board and then hopefully you will feel better. We have all been where you are ( me not that long ago) so we all know exactly what you are feeling.
The other thing I noticed is I seem to get stuff done, but at a much slower pace. This isn't all that bad I decided, but at first it was devastating to me as I prided myself in how efficient I was. Now I move through my life at a slower, more relaxed pace and really that is just fine. (I try to find the positive in what I can)
Just remember we are with you all the way
Lisa

I can't say it any better than Jack, Doug and Lisa. Welcome Shannon. If you don't want your clients or others knowing you are you here(ie. your full name)since it may appear googled and disclosy your ilness, then just remove your last name.
I am too am more easyly upset then before but I have a happy outlook on life and accept the things I can't change. For me it works and the disease doesn't wear me down. I just adjust and keep rolling. If I can accept the change in my looks (see my album for before and after) I can do anything.

Admire your attitude. I believe my anger will get better now that I have acknowledged it and have no excuse not to deal with it. Deep breathing!

So far, so good for today

The new "regular" is a difficult adjustment! I can't walk my dog because I can't keep my balance. I am getting instruction in some balance exercies but I have to use a cane and that is embarrassing to me.

Regarding my name, I would remove my last name if I knew how. Mind giving me a little tutoring?

Thanks for the reply.

Shannon

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Originally Posted by Shannon T

Regarding my name, I would remove my last name if I knew how. Mind giving me a little tutoring?

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Hi hi...
All done! You're now Shannon T

You may need to log in again but not sure. Let me know if that's not ok and I can change it to something else.

Only admin can change usernames :D

Shannon-

Glad you are having a shift in your thinking! Here's another one: Using a cane when you need one is just fine. People treat you differently. Mostly, it is positive: doors held open, little courtesies given. As a lawyer, maybe it'd help you win some cases! I joke, but not entirely.

That little extra stability beats falling on your caboose. I still need one from time to time, five-plus years after diagnosis.

If the standard aluminum medical supply store cane is too industrial for your tastes, see if you can find a hand-carved one that has a little character to it! Antique stores often have such things. Or- I know a lady whose friend hand-carved a beautiful cane based on a theme of the lady's name. I marvel each time I see it!

Another way of thinking about it is "I will use this cane for stability until I am well enough to stop using it." It took me six months to reach that point. Do you have the peripheral neurapathy that many of us do? My feet were so numb they felt like blood-soaked sponges. The feeling was unpleasant. If I stood on them for any length of time, I would start sweating and get light headed to the point I had to sit down or pass out! I hope that isn't your case.

Personal safety is more important than vanity. Tell yourself that until you believe it. Dealing with healing from the initial flare of WG is a big enough burden for your body without adding scrapes (potential infection sites), bruises, or broken bones from a fall. For some time, you will heal more slowly because of your compromised immune system.

Glad to hear that I'm not the only one to struggle with self image problems and mobility aids.
I started using a stick to help walking about a year ago, but it should have been much sooner because I find that it helps a lot. Mine is a black, spring shaft, hiking type. I would not like to use one of the more medical looking ones. (can't believe how vain I'm sounding!)
After much encouragement from my wife and children, I have also hired an electric mobility scooter a couple of times when on holiday. I hated the idea! But I have to admit that it was nice to be able to get about with the rest of the family instead of sitting in the car with a book. I still find that I'm a bit resistant to this one and need to give myself another talking to.

I can't walk my dog because I don't have balance. My dog is a Rodesian Ridgeback so he is big and any little pull will knock me down.

Right now my hearing has improved but the balance and using a cane is getting to me. New regular. Just seems like so very many changes in such a short time. I feel as though I were in the game of life and still a player and now I feel very old. Guess the cane is a very difficult adjustment. Had to ask a client to carry my breifcase to my car today. I am tall and have been healthy and in the past would never ask for or need help.

Guess everyday is pretty rough when you are first getting adjuster. Time cures all.

Thank you for your comments.

Andrew, Thank you for the change.

Doug,

Point well taken. Sexy black cane it will be then. Right now I only have a purple one with white dots that my partner's grandmother used. Resisting getting a nice one is just stupid, anyway cane is too short.

It helps to think that I might now need it forever.

Jack,

I am also displeased that I cannot wear my heels. I knew I was vane, but didn't realize how much until this started.

Well I'll worry about vanity another day, today I am still dealing with the cane!!!!!

The vanity issue! I bet very few of us can say it didn't hit us at some point, whether the Prednisone moonface (for those of us so afflicted, now, or in the past), the cane, the hair loss, whatever it was that got to us. I had to take several falls before I realized I was an idiot who needed to use a cane before he really hurt himself! The falls weren't the hard part: getting up with any grace or dignity was. Talk about dealing with vanity issues then! It reminded me of when a cat accidentally gets wet, then shakes it off with a "No, I really meant to get wet!" sort of swagger, all the time thinking "I hope the dog didn't see that!" You most likely won't need a cane forever. But, if you do, make it part of your remarkable adjustment to a debilitating, life threatening disease, not a reason people should pity you. It's all in how you present yourself to the public. Humor helped me get through the worst of it. Once I could find the humor in the worst of circumstances, things started falling into perspective. "...and that, ladies and gentlemen of the jury, is why you should find my client, Mr. X, innocent!" WHACK! (the sound of your cane striking the rail on the jury box, for emphasis and to wake up that juror in the back row who threatens to be the only one holding out for guilty) Haw!

p.s. A proper fitting cane helps you make the adjustment because you are less conscious of it. I used one that was too long for me for a while. It was a beautifully carved one that I liked to look at, if not use. It was uncomfortable, made my arm joints sore to use. Then I bought one of the notorious medical supply store aluminum canes, which, significantly, can be adjusted up or down to better fit your height. It works very well for those times I need it.

Oh Shannon, how I hear you about the high heels. I had to say goodby to them over 2 years ago and now wear old fuddy duddy shoes:eek: nothing else fits because of my "gimpy" feet. I have been to all the shoes stores around, everytime I travel to the states I look for nice wide and deep shoes. They just don't make them, if they do its your regular Dr. Sholls type. Even Clarks are not wide enough. How hard is it for manufacturers to give us nice shoes, surely if you can make one you can make the other. I look forward to the day that I can find Manolos that fit me (he he he)if you find a brand that fits tell me please.
I used a cane for 6 months, now I keep it in the car just in case. I also take it when I travel and play it all its worth:D

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Originally Posted by jola57

Oh Shannon, how I hear you about the high heels. I had to say goodby to them over 2 years ago and now wear old fuddy duddy shoes:eek: nothing else fits because of my "gimpy" feet. I have been to all the shoes stores around, everytime I travel to the states I look for nice wide and deep shoes. They just don't make them, if they do its your regular Dr. Sholls type. Even Clarks are not wide enough. How hard is it for manufacturers to give us nice shoes, surely if you can make one you can make the other. I look forward to the day that I can find Manolos that fit me (he he he)if you find a brand that fits tell me please.
I used a cane for 6 months, now I keep it in the car just in case. I also take it when I travel and play it all its worth:D

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(Good for you, Jolanta, though I shouldn't encourage that behavior! Ha! The reality is, if you are traveling by plane, you do a lot of rushing. Even if you don't need a cane for normal walking, in a rush you may be taking risks: follow Jolanta's "bad example"! A fall when you are on a vacation or business trip just isn't the thing you want to risk.:()

Quote:

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Originally Posted by jola57

Oh Shannon, how I hear you about the high heels. I had to say goodby to them over 2 years ago and now wear old fuddy duddy shoes:eek: nothing else fits because of my "gimpy" feet. I have been to all the shoes stores around, everytime I travel to the states I look for nice wide and deep shoes. They just don't make them, if they do its your regular Dr. Sholls type. Even Clarks are not wide enough. How hard is it for manufacturers to give us nice shoes, surely if you can make one you can make the other. I look forward to the day that I can find Manolos that fit me (he he he)if you find a brand that fits tell me please.
I used a cane for 6 months, now I keep it in the car just in case. I also take it when I travel and play it all its worth:D

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(Good for you, Jolanta! Even if you can walk well without a cane, rushing around in an airport, you may find yourself talking a fall unless you have the cane.:( Not the sort of thing you need on a business or vacation trip.)

Mate of mine uses a cane whenever he goes on holidays. Has absolutely no need for it but uses it to get to the front of queues and get good seats on planes. It's collapsible. I'm going to booby trap it next time so that when he leans on it, it'll fall apart :rolleyes:;):p Almost worked last time :D

You might not think so right now, but you will have better days.
I like to come to this site just to see what everyone has to talk about.
Even if I don't participate, I feel better just reading positive thoughts and knowing I'm not alone with this disease.

Doug, that is precisely why I take the cane along. Rushing around the airports makes my hips hurt and feet to go even more numb than normal, and i don't relish broken bones at this stage. So the cane is both a physical need and a prop (pun intended)
but should Manolo produce shoes I can wear oh boy would I wear them.

Andrew, my cane is collapsible, the one with push holes. I'll make sure you never get near it though now that I know:D

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Originally Posted by jola57

Andrew, my cane is collapsible, the one with push holes. I'll make sure you never get near it though now that I know:D

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Who?? Me?? Perish the thought :rolleyes::p;)

YouTube - Mark Lesko's Story - Wegener's Granulomatosis

Here's a link to a video that was aired on a TV news program. (It's not by me, so is more edited.) It is from the point of view of a father whose son died from WG. We are survivors (so far) of WG. I know I tended to think of myself as one of the 9 who survived at the time I was closer to being that 1 in 10 who didn't. That's probably natural. Take a look.

i think any non weggie who doubts the seriousness of the disease we suffer from,because we look " ok " should watch this video.nice one doug.
john.

YouTube - Help "Full Version"

Here's another one, again from the point of view of a family member, a 12 year old son. Sound quality is a bit poor, with a bird song and lawnmower (I think) in the background.

(In the background, I heard an American Robin, which is a North American thrush related to what Europeans call a blackbird, which looks smaller and with a shorter tail to me. Americans use the term blackbird for a handful of birds, most commonly the common grackle. The term grackle is applied to starlings, I think, in the Old World.) The American robin isn't related to the European robin.)

http://upload.wikimedia.org/wikipedi...s_merulaRB.jpg Europe ~ blackbird http://www.avianweb.com/images/birds...s/european.jpg European robin

http://www.allaboutbirds.org/guide/P...bin_glamor.jpg North America ~ American robin http://www.allaboutbirds.org/guide/P...kle_glamor.jpg NA common grackle aka "blackbird"

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Originally Posted by crackers

i think any non weggie who doubts the seriousness of the disease we suffer from,because we look " ok " should watch this video.nice one doug.
john.

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I'm glad you are able to view this, John. I oftentimes listen to radio stations from Europe or Asia because there tends to be less chatter and fewer advertisements than all but public radio in the USA. Yet, the one country that I can't listen to is England, well the whole UK, because of some copyright issues or something. It involves lots of lawyers and idiots at any rate: UK is unique among civilized parts and uncivilized parts of earth in this way! Rant, rant, rant! Sorry! At least the flow is unaffected the other direction.:mad::(:confused::cool:

doug i'm surprised you can't pick up the bbc world service. i thought they transmitted everywhere.
john.

BBC World Service is available on Public Radio and Television. I haven't listened to my short wave radio for years, but BBC World Service, of course, is available on that, too. It seems that service is 24/7, though they switch to various languages throughout the day as I recall. I used to listen to Radio Nederland a lot since I have friends in Amsterdam I've written to since 1989, and known since 1976. That service is streamed now, with much better sound quality. They provide reports to our public stations as well. For that matter, so does Deutsche Welle. So why am I whining?! I wanted to listen to a streamed station that I might hear on my radio if I lived in UK. The strangest one I ran into was a station in Poland that played Tex-Mexican music (accordian, trumpets, various stringed instruments) that I happen to like. It's related to the polka, so I suppose that clears it for 24/7 broadcast in Poland! For those of you who are unfamiliar with Tejano music, I've added a link to some on YouTube:


http://www.youtube.com/watch?v=ra42ksJg3UI

Thanks Doug for the reality check.....sad story

Can you listen to the BBC over the internet? BBC - Radio Homepage |

Radio 4 is my constant companion.

Doug, thanks for this special story. It makes you appreciate where we are at more.

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Originally Posted by Jack

Can you listen to the BBC over the internet? BBC - Radio Homepage |

Radio 4 is my constant companion.

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Jack- To my amazement, I'm listening to BBC World Service as I type! Thanks! I'm going to try to pick up some of the other ones again. Perhaps the radio black-out I ran into a few weeks back was a situation now resolved.

p.s. I was intrigued by the Radio 4 description: "Intelligent speech"! I switched to that instead. Note that UK television is available to citizens of UK only, though this same link will bring that in. Regardless, the radio link now is on my Favorite tab. Radio 3 will get a try later.

I understand what you are saying about being normal again. As far as preds I have been on them since the middle of Jan/09 and can't seem to get below 10 preds (50mg) per day. The minute I go down my symtoms go up. My hearing is also affected by WG's.

I also get a sore throat and persistant cough. Another thing that has been happening is my throat sometimes feels like it goes into a quick spasm where I get a sharp pain that just catches you off guard. Does this make sense to anyone or sound familar????

So sorry that you have joined our group. Pred. did not affect my emotions, but it did bring back one deaf ear. Recovery is not quick, it is a slow process. You will find a new normal, not your former one. Celebrate each little victory and treat yourself kindly. Get a bone density test immediately. Pred. sucks the bone marrow out of you. It can also thicken your eyeball lense. That can be fixed with surgery. Both happened with me. But it kept me alive and hearing. Keep asking questions. No one person has all the answers. Take care, Hybrid

Hello Everyone my name is Mario and I my mother has been diagnosed with WG I have been taking care of here for the last few months and have some concern she is 68 diabetic, with high blood pressure and on dialises. I am at the hospital now with her we will be going home tommorow. She had a very wiered episode where her swolen blood cells where not getting to her brain she was unabel to talk and was completly wacked out. I am not sure what the Doc is going to give her as far as medication just yet but i am looking foward to talking to everyone and learning more about WG thanks o We are from the central valley in California the Freesno Area.

Hi Mario...
Which hospital is your mother in? Not sure about the swollen blood cells, sounds stange. Never heard of that before. I hope the docs get her on a solid drug regime soon. The usual 'starter' drugs are Cyclophosphamide (Cytoxan) which is a fairly hard-hitting chemotherapy drug. It helps 'keep a lid' on the overactive immune system that is part and parcel of Wegener's. The second drug is usually Prednisone. This is a steroid that assists with reduction of inflammation that is also part and parcel of Wegener's. Other drugs for blood pressure etc will probably be prescribed as well. These can vary from person to person. Hope that helps a bit.

Hi Mario,
I'm sorry your mom now has Wegs on top of her other conditions. What areas are affected by the Wegs and when was it diagnosed?

I'm concerned that you're still uncertain about what drugs your mom is going to be on. Once it's diagnosed, that's usually the first discussion. Wegs treatment isn't simple or straightforward.

Most of us will ask if you have a Wegs specialist involved. Not just a rheumatologist or a nephrologist, and not just someone who's treated Wegs before. A Wegs specialist means they've treated A LOT of Weggies-- maybe that's all they do all day. Given her age and such difficult complications, I suggest you find one immediately and get her there or get her docs to consult with them regularly.

Please don't wait until she's discharged. You've got to hit the ground running on this one. We recently lost an elderly woman in this group-- newly diagnosed, but had been in excellent health pre-diagnosis. She was not treated by Wegs specialists and her doctors' poor choices were evident.

Do you know about the consultant docs through the VF? We can help you get your mom to excellent care. Just ask if you need help with it, or anything else. :)

Mario- Welcome to the forum. I'm sorrry to hear about your mother. Both Andrew and Sangye beat me to the punch on advice. Believe me, they both know what they are talking about, and I can only emphsize what Sangye said about lining up a Wegener's granulomatosis specialist immediately. Continue to keep us informed and to ask any new questions you might have.

Please, please be the toughest advocate you can be for your mother. Go to the internet and try to get answers to questions or questions, for that matter, to bring up with your mother's doctors. I don't know how you feel about doctors: unapproachable gods on earth, people you are comfortable talking with about your mother's health issues? I hope it's the latter.

WG oftentimes affects the kidneys, which are already at issue because of the diabetes. On top of that, the small and medium sized blood vessels are seriously affected by WG, again a huge concern since your mother already has a disease that affects blood vessels and circulation. It's a double whammy, I'm afraid, one that I can't recall anyone mentioning yet on this forum. Then there's the triple whammy, high blood pressure, which Prednisone will make worse. This triple threat to her life means you have to keep pressure on the doctors for complete information on how she's doing (don't leave nurses out- they can be good sources of information), what they intend to do for her in terms of treatments or drugs, and to answer questions that come up.

While this is not a forum to give medical advice, it is one with Weggies (Wegener's granulomatosis-afflicted people with both active and inactive WG) who, as you perceived, can tell you how we were treated or can suggest questions to ask doctors about given treatments (Prednisone can weaken bones; your mother, at 68, may already be at risk for osteoporosis, so a logical question of her doctors is "Are you monitoring her bone density, and how has it changed from the last time to now?" or "What are you doing to assure my mother doesn't have excessive bone demineralization?")

We've put a lot on your already burdened back, but we are here to help you deal with that burden.

I hope your doing better Im down to 10mg from 75mg and im doing better for the most part. unfortunatly I am also flaring back up. I feel for you as I have a hard time playing with my 14mo old daughter. God bless and Happy New Year

hi to everyone,my name is michelle and its my uncle who has being dianosed, he was just dianosed yesterday but has being living with the symtoms since august. we stay in renfrewshire in scotland, my uncle is very upbeat at the moment, just glad in a way to have a name to what was wrong with him,hes just starting his treatment so my family and i will take each day as it comes. the problem no one seems to answer is will he get his hearing back as a result of wg he has went deaf almost,i would love to hear from prople that have experiences of getting there hearing back or maybe they have'nt, i would be very grateful thanks.

Hi poochy29, welcome to the group. Thank you for joining and looking for info on behalf of your uncle. I don't think anyone can say ahead of time if your uncle will get any of his hearing back or even all of it. The results range from no hearing restored all the way to full restoration.

Hi Michelle,

I was diagnosed with WG in 2007 and just before that I had some hearing loss. However, just as I was diagnosed and started up on my treatment, I completely lost my hearing in my left ear and ever since I've been hanging on to my right ear. Your uncle needs to see an ENT specialist or at least an audiologist who will do a hearing test and tell him whether or not it's permanent hearing loss. My left cochlea was damaged so much that the hairs are completely gone - hence I can no longer hear - they call this sensorineural hearing loss and it's permanent. Your cochlea is actually a nerve just like your spine which is actually formed in the fetus within the first three months so once destroyed it can't be "fixed" (there is stem cell techology but just not available yet!). If the ears just have an infection (caused by WG) and the middle ear is involved - meaning the ear drum and those bones just behind it, they call that conductive hearing loss which can be fixed - eventually! All of this can be determined by just a hearing test and an ENT specialist can give you better information.

I now wear a hearing aid on my right ear, but it's not the same. I was told from the beginning that my hearing loss was permanent and yet (even to date) I keep up the hope that it will come back because it's been very difficult to accept this disability in life - it really is debilitating - simply to not hear! The only hope is that if your uncle losses all his hearing, he won't ever be deaf - he can always get a cochlear implant - but that's a whole other message.

Let me know how he's doing, make sure you get the best possible ENT or ear doctor who can work with the WG specialist as this was key to determining when the WG was under control. I still struggle with more hearing loss every time I get a flare up so it's a never ending struggle for me. If you or he needs any support or more info, be sure to contact me.

Good luck
Gurinder

Hi sangye,thanks for welcoming me and posting a reply,i think as long as my uncle knows he maybe get it back it will keep his spirits up so thank you for your information.

hello!
My name is Roberta, age 58. I was diagnosed with c-anca vasculitis Dec 14,2010. I think I had it longer 2 years probably. My primary md thought the microscopic blood iin urine and protein was not a big deal. He thought lymes, but was negative. I did have the purpurpa rash on legs off and on and the joint pain got worse in the fall of 2010. My rheumaotologist said it is wegeners but it has affected my kidneys 25-35% function now. I started with cytoxan 150mg daily and prednisone 80mg daily on dec 18 and bactrim daily. I also am on atenolol and lisinopril fof b/p. Take prilosec, ambien also. I have the moon face already from the prednisone, haven't really gained a lot of weight yet, it is fluctuating. I already wear a hearing aide left due to previous surgery in l973. My md Nephrologist states that hopefully I will have 50% kidney function after 6-9 months on cytoxan and prednisone. Does any one get the shakes from prednisone or a shivering like sensation from either of this drugs???? My blood sugars are also something starting to climb. I need to watch my diet more----oh boy!

Smile,
Roberta

yup i get the tremors sumtimes in my hands from pred..but not bad..im finally getting to reduce my pred..i got to lower to 50mg yeserday..and after 2 weeks ill beable to go down to 40 mg..heck yay..at 80mg your apitite is going to be monsterous..not only will water retention get you the apitite too..or thats how it was for me

Hi Roberta and welcome. Yes, i too have the pred shakes, even on 4mg, but I used to get them often at 60mg. Your treatment is the "regular" regimen for wegs. I don't have kidney involvment and will leave that part to others who do. It is early yet, but you should be seeing results soon, as in lessening pain and kidneys getting better. I hope it is soon.

Andrew, yes I have been on 80mg daily with the prednisone and cytoxan 150mg daily since Dec. 18. My appetite is not monstrous, not alot of weight gain so far, just the moon face and increased irritability by far. The thing that has me concerned if I can afford this illness after my cobra health insurance runs out on April 2. I can not work now. I feel all I do is complain!
My mom is a challenge and is 82 and lives a lone, and my sister is going through chemo for lung cancer and I am very close to her. She is only 53, never smoked a day and had surgery in Dec 2010, removed her left lower lung for this. So my problems are not as bad! My stools are not always black, it just seems so after I take the cytoxan. I did mention it to the neprhologist and I am on Prilosec, just increased to twice a day. I was wondering if the Ambien 10m (for sleep) is adding to the shakes and dizziness???

Roberta

Ambien can make you sleepy in the morning, with all the other medicines that you take it is hard to make that call...which pill is causing which side effect. Did the dizziness and shakes start after the Ambiem?

I think it's pretty scary that you've been on 80mg pred for 1.5 months. That's way too long at such a high dose. I'm afraid you might have upper GI bleeding as a result. It often shows up as only dark (old blood) stools on and off. You need to get into a doctor tomorrow to test for occult blood. A PCP can order the test. Upper GI bleeding can be deadly because you're losing blood silently. I'm not sure that prilosec is enough to protect the stomach from such a prolonged use of 80mg pred.

As far as insurance, since you can't work you should apply for disability immediately. Someone started a thread recently and I posted what I've learned.

I have already applied for ss disability they said it takes about 5 months to get approved, if I get approved.
I was hoping I could get it before the insurance runs out in April, WILL SEE!!

Yes I will check with my md about occculting the stools! The nephrologist said I would be on these meds for about 6-9 months. So I'm thinking I will be either very healthy or dead! I go back Feb 23 and have more blood work before I go that day! Such an optimist---I am! I feel like I am whining alot! Thanks for everyone's feed back.

Smile,
Roberta

SS Disability takes at least that long to get approved, but doesn't cover your first 5 months of disability. So if your application says Jan 1 as your date of disability, you won't get benefits until June. That's assuming nothing goes wrong with being approved. A very high percentage of people are routinely denied even though they qualify. I hope yours goes through without a hitch. Mine did, so it's possible. :smile1:

Spammers? What?

Hi gurinder, thank you so much for all your information i will pass it on to my uncle, his hearing at the moment comes and goes and like you he struggles more with the hearing loss, he had an ent doctor in the begining as they thought he had whats known as glue ear, so i think he should give him a phone and set up an appointment with him to see if he can help him, once again thanks for all your information and good luck in the future take care, michelle.

Param: I moved your post to its own thread, you'll get more attention there :)

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