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Brooke
12-17-2009, 03:56 AM
Hi, I am new to this site. My name is Brooke and I am 28 years old. I was just diagnosed with limited wegener's disease as it has only affected my sinuses and upper air way.
When I was 18 I got a blood clot in my right calf, my dad is a physician and had me get a bunch of blood tests done. Turned out I have a protein s deficiency. Well, I had no problems after that. I was on blood thinner for a while and then was able to discontinue that.
It all started about 7 years ago, when I was in college. It started with a tickle in my throat and I couldn't stop coughing and I also would lose my voice all the time, until it was completely gone. I saw many doctors, ENT, Allergists, pulmonologist, Voice Specialist, had ct scans, xrays, blood tests, bronchoscopy, biopsies of my nose and more. My ENT said I had Chronic Sinus problems, he actually did not believe me at first that I had not had surgery in my nose because it was so scarred up. In the back of his mind he thought Wegener's Disease but my ANCAS and biopsies always came back negative. Anyways for the past 7 years I have been on and off oral steroids, and antibiotics. Last year I had 2 sinus surgeries, after the first surgery, I developed saddle nose deformity right away. (didnt know if that was from surgery or wegener's disease) anyways I had that fixed this year. Doctor borrowed cartilage from behind my right ear to put in my nose. He did a good job. I should mention, I got pregnant when I was 24 and had a great pregnancy and have a healthy 3 year old boy now.
Finally I went to Mayo Clinic in September of this year. I saw pulmonologist and ENT there. I also had a bronchoscopy there. They also took a culture while doing that procedure. They said I have a narrow airway and inflammation which is consistant with Wegener's Disease. Even though my biopsies have come back negative for wegener's, there was so much inflammation from my nasal biopsy that it was enough evidence to conclude that I do have limited wegener's disease.
I am now on 25 mg methotrexate, prednisone, bactrim, and pholic acid and an anxiety medicine. I started this about 1 month ago.
My symptoms are, chronic cough, especially at night, and I cough up flem looking stuff. I have to do a sinus rinse everyday, a few times a day. I get big chunks out of my nose.
Wow, this got long. I have more to say but I will write back later. thanks for listening. anyone else have these symptoms?

Jack
12-17-2009, 04:20 AM
Hi Brooke, sorry you had to find our site! ;)

You will find a lot of people on here with sinus issues, it is how my own case started. I also had a lot of surgery including removal of my sinus linings! All a waste of time of course, because it was Wegener's causing the damage.
You are lucky to have been diagnosed so early and before the disease can spread. With any luck, the sinus problems should go when they get the disease fully under control. The current thinking seems to be to treate more gently than in my early days 25 years ago. I was treated with very high doses of drugs which stopped all the symptoms in their tracks, but it is not considered to be very safe these days.

Brooke
12-17-2009, 04:29 AM
Thank you for responding so quickly. I do hope the methotrexate works. They say I will need to be on that for 2 years. I have been on the steroids for about 3 months now and I think I have one more month of that, then I will just be on the methotrexate.
Do you also cough "stuff" up?
I was also diagnosed with asthma, just last year. I do not feel I have asthma, I feel it is something else. (wegener's). I do get short of breath and sometimes it is hard to breathe.

Brooke
12-17-2009, 04:36 AM
Also, do you cough a lot? Does the medicine help with coughing? I do have subglottic stenosis.

elephant
12-17-2009, 06:14 AM
Hi Brooke, welcome. I myself had four maxillary(sinus ) surgerie and a bunch of other surgeries. Once your wegeners goes into remission alot of those symptoms should go away. I had a slight cough, but mine was more stuffiness,sinus headaches/shortness of breath. I had a lung function test and it showed that I had some lung damage from the WG. The lung doctor said it mimics asthma like symptoms. I have two inhalers but I only use one if I get short of breath. Sometimes the meds take a while to work and sometimes it's not the right medicine for you and they switch and give you another one or increase the one your on if your symptoms get worse. Make sure you let your Wegeners doc specialist know what your going thru. We are here to help and listen. :D

Brooke
12-17-2009, 06:17 AM
Thank you. I live in Sioux Falls, South Dakota USA. I have seen a pulmonologist at Mayo Clinic in Minnesota, I don't know that she is a Wegener's Specialist or not but I know she does have more than just one patient with Wegener's Disease.
I use an albuterol nebulizer and am on another inhaler, symbicort.

elephant
12-17-2009, 06:23 AM
I have the albuterol and symbicort, I have yet to use the symbicort. It took me awhile to use the albuterol, I was in denial. The pulmonolgist said just try it. I just saw my pulmonologist today and I'm suppose to start using the symbicort. I will try next week. :rolleyes: You will see with this disease it's a full time job. You start to develop a sense of humor.:)

Jack
12-17-2009, 07:23 AM
I use the same two inhalers, but they have little effect on my own lung condition. I have bronchiectasis which is not very common with Wegener's though not unknown and cough up a great deal of mucus. Lots of other members are troubled by coughing too, but due to different lung conditions.

I've mentioned it so many times before that I won't go into detail, but when I was suffering with my sinus problems, I had horrendous amounts of discharge, bleeding and crusting. The saline rince helped a good deal then. However, since being treated for Wegener's, all that has gone and left me with little more than a runny nose.

It took around 5 years to bring my Wegeners into full remission using lots of highly toxic drugs which I have had to continue with. Most of my problems now are due to side effects, hence the more gentle regimes now being used. However, in my case, diagnosis was so late that I would not have made it without this treatment.

katwoman
12-17-2009, 08:27 AM
Welcome to the group Brooke!:)

I am sorry to hear you are having so much trouble and I hope the medication improves your situation quickly. As Jack mentioned many of us also suffer from serious sinus issues, like yourself I too suffer from severe crusty (due to a current flare its worse then usual and I also have saddle nose, which to date I am unable to get repaired). It is currently affecting my sinus area but also having joint pain and tiredness as well, I am also on methotrexate and Pred.

Not only do i use a sinus rinse (also always have a bottle of Fess handy in my handbag) I was also advised by ENT to use KY Jelly :o(yes I giggled at the doc) but believe me its amazing stuff if used regularly up the nose it loosens all that crusty and keeps the area moist.

It is a good thing your doctors diagnosed it so so early, my initial sinus and eye problems were over a year or two and it wasn't until I was admitted to hospital not in a good way with kidney/lung involvement, purple spots, fever and swollen joints was I diagnosed with WG.

I have found that everyone on this site is very helpful and offer great suggestions/advice for dealing with WG and so any questions ask away!
katwoman

snooz23
12-17-2009, 10:57 AM
Hi Brooke,

I had to welcome you to the site and respond right away because I am from Mitchell, SD. That is where I grew up, I currently live in Columbus, OH. I was just so surprised to see SD here I had to write and say hello.

I am also recently diag.--Sept. 15--and am on 25 meth., tapering at 17.5 pred. (after 6+months), bactrim (3X week) and folic acid. My wegs presented with hearing loss, I have not had a whole lot of sinus involvement per se, except the mastoid. I do have some lung involvement and will be seeing a pulmon. at the Cleveland Clinic at the end of the month. I have chest pain and shortness of breath, I was hoping these would go away w/ treatment, but like Jack said on these more mild treatments I think remission is a loooooooong process that will take a while to see the effects. I do the nose rinses daily more so as a precautionary purpose.

I hope all goes well with your treatment. By the way I have two children, 2 and 4 years old.:)

Sangye
12-17-2009, 12:30 PM
Hi Brooke,
Welcome to the group! I'm glad to hear you're in safe hands at Mayo Rochester. They're one of the few Vasculitis centers in the world. I'm assuming you have a rheumatologist there who oversees your care? That is a must with Wegs.

I'm glad to hear your treatment is going well. I'm surprised to hear they're "only" using methotrexate, since it's usually not strong enough to get active Wegs under control. They usually use it as a "maintenance" drug once the disease is less active. If a Mayo rheumy says it's good enough for you, then I wouldn't have my doubts.

firecracker
12-17-2009, 02:08 PM
You sound just like me way too much. Years of doctors guessing meanwhile chunks of stuff coming from your nose and damage done that was unexplainable. I took mtx for 8 months starting two septembers ago. I stopped this past May. I got too sick from it. It may or may not have helped. Two months off of it and i was in so much face pain i couldnt stand it. My bloodwork is horrible again. I start imuran saturday. I got toxic from mtx so i cant wait to see what this new med does. I will have to take it daily and get bloodwork weekly to monitor the damage i guess. For a month i have been on 30 mg pred to control the inflammation and pain til i got back to my rheum who forgot who i was and that he had actually seen me before and figured i could wait to see him in 4 weeks even though i have been bleeding out of my right sinus and face is swelled up like a freak. I feel for you‏. if you read my past posts, you will see i have some really weird stuff that seems to be somewhat different then the rest here. the only thing i have that says "wg" to the docs is the damage done and the pr3 count.

Sangye
12-17-2009, 02:38 PM
Firecracker, it's good to hear from you. I've never taken imuran, but I've always heard that it's very well-tolerated. I can't think of anyone who's had any side effects from it. It can be hard on your liver, so they do blood work to make sure your liver is okay. Many people stay on imuran for years and do fine.

I'm sorry to hear you've been in so much pain, but glad you're finally on meds that can help.

firecracker
12-17-2009, 05:54 PM
I def agree on the mtx not being strong enough to knock out the active weg. I just hope something is. Like what i am about to take. Mayo is who put me on mtx but it was the florida mayo.

elephant
12-17-2009, 11:16 PM
Firecracker hope you start to feel better. Having facial pain is a nightmare. Love your positive attitude!:)

Brooke
12-18-2009, 01:06 AM
Thank you so much to everybody who has responded, it is great to know there are others that know what I am going through.
I do not have a rheumatologist. They say I only have Limited Wegener's Disease. My sinuses are very affected and I have subglottic stenosis and little spot on my lung. I cough a lot and am wheezy and hard to breathe sometimes. Does anybody else just have limited wegener's? I am a bit worried now about the methotrexate not going to work? I am on 25 mg and will have to be on that for 2 years. I just started it one month ago.

deb
12-18-2009, 01:24 AM
Welcome, Brooke! I too have limited Weg. with mostly sinus involvement. I was diagnosed June 2008 and have been on a weekly injection of Methotrexate since then. I also am on pred. which varies from 15-60 based on my flares and how I am doing. I have not have any trouble or apparent side effects from the Methotrexate (other than 2 flares during that time that necessitated more raising pred to get back under control). I have seen several posts from other who have experienced some issues with it though (nausea, sleep issues, etc). I am wondering if those who have posted issues with it were taking the oral form. We did raise the amount of Methotrexate I take once. I think it is helping without doing too much other damage. I was told that we need to go to Ritux if I flare again since my doctor is seeing it help with his patients with recurrent flares.

Brooke
12-18-2009, 01:39 AM
Thanks Deb. How come you are on injections vs oral? What is Ritux?
My blood work (anca) and urine test have always come back good. The pulmonologist at Mayo Clinic is the one who diagnosed me with Limited Wegener's Disease due to the looks of my nose biopsy.
Does anybody know if I will be able to have more children after my treatment is done? How about if my eggs are good now, (being on methotrexate) if we were to have a surrogate?
Do you think having a blood clot in my leg has anything to do with this?
Sorry, my questions are all random!

Jack
12-18-2009, 02:24 AM
If you have a thrombosis in your leg is is almost certainly connected with having Wegener's. The risk is over 20 times higher in Wegener's patients and I think I am suffering from it myself at the moment. :(

The term "Limited Wegener's" seems to be used a good deal at the moment and I'm not sure that it is at all helpfull. I have yet to hear of a single patient on the Forum or elsewhere who has collected the full range of symptoms ( I probably come nearest ;) ), but new symptoms are a very common occurance for many of us. You don't need the full set for it to ruin your day!

Sangye
12-18-2009, 03:17 AM
(Jack, do you have another clot?)

Brooke,
Limited Wegener's is the same disease as Wegener's. It only means that the disease hasn't affected multiple body systems, like the kidneys. It isn't a statement about the severity of your case. You could have severe lung involvement that could be deadly, but it's still considered "Limited" because it's "only" in the lungs.

Also, there is nothing that limits Wegs from becoming more systemic. It's not like cancer that is either local or metastatic.

I have limited Wegs-- many people on here do. Still, the disease and complications from it have almost killed me numerous times. Others with more systemic involvement are able to do things I'm still not!

The take-home message is that Wegs is Wegs, and must be taken just as seriously no matter how and where it affects you.

Do you need help finding a Wegs specialist, Brooke?

Brooke
12-18-2009, 03:31 AM
Thanks- I have been to Mayo Clinic in Minnesota, I saw a pulmonologist there, I don't know if she is a wg specialist or not. That is about 4 hours from where I live. The doc at Mayo is letting my pulmonologist in my home town monitor me since he knows my history and is closer. Is there a Weg specialist near South Dakota?
Do they only put you on the cytoxan if your kidneys are involed? I am just on methotrexate and oral steroids and pholic acid and bactrim and zoloft for anxiety I get from the steroids. I thought they only put you on cytoxan if wegs has afffected you severly, like life threatening at that time?
Does anyone's ears constatly have a high pitch buzzing? Kind of like when you leave a tv on but the volume is down, you can hear that noise? That is what I have all the time. Could that be from my sinus rinses? Or is that a Wegener's Symptom? For those of you with eye or hearing involvement, does that get better?
I also have 2 symmetrical round bumps under the tops of my eyelids. I saw an eyelid specialist (yes they have an eyelid specialist, haha), he said it was scarring from wearing my contacts so much and I also used to get sties in my eyes as a teenager.

Jack
12-18-2009, 03:49 AM
The noises in your ears are due to tinnitus, it is very common with all Wegs patients but also mentioned as a side effect of some drugs.

elephant
12-18-2009, 03:53 AM
Brooke when I was 16 I had a blood clot. My left lower calf was swollen and hard to walk on. Being in denial and not knowing I walked on it for months, it could of killed me. I went to see my rheumatologist ( at that time they didn't have a clue I had wegeners) I mentioned my swollen leg and immediatly was placed in the hospital with IV heparin drip for a week. Then coumadin for 6 months. Wegeners disease effects you head to toe. At first the rheumatologist thought I had limited, but then looking back 30 years it is all over. Wegeners can change from limited to all over head to toe. Why even label it Limited, you never know. Like I said before it is a wicked and sneaky like a two year old eating a cookie.:)

deb
12-18-2009, 05:41 AM
Hi Brooke.

I agree with everyone else about limited being a term of very little meaning for us. Wegs affects you systemically. I do not have a good answer as to why I got injections instead of oral. I assume it was because of how sick I was at the time. The idea was that I would be able to perhaps move to the oral later. I was deathly afraid of shot. Other than the dentist and when having my children under anesthetic, I had not had a shot (IV and taking blood is not the same for some reason) in 40+ years. It would not have been my choice. After seeing so many on oral Methotrexate having issues, I do not want to go there and have gotten pretty okay with the shots. Maybe my husband is just better at giving them to me now.

The Ritux is short for the longer name. It is a drug recently approved for us. I think it will replace my predizone. Sangye is the expert here and started on it recently. I will let her tell you more or you can check the threads as there are several talking about it. I am hopeful so I can get off these steroids I have been on for 18 months. I am so tired of looking like a pumpkin. The prednizone seems to have reacted differently after my last flare. I really ballooned everywhere a lot more than usual.

Keep asking questions and reading past posts. It took me a while to find the list of threads but I am still combing them for information. I keep my 9 month old granddaughter (our first) and do not get to devote much time to reading these days, but oh the fun I am having!

Jack
12-18-2009, 06:02 AM
I'm afraid that Rituximab is a B cell killer rather than an anti inflamatory so is not a replacement for prednisolone. It will be a great day when they find a substitute for that one with no side effects!

Sangye
12-18-2009, 10:05 AM
Jack, that's true, but my Wegs doc referred to rtx as a "prednisone-sparing" drug. Meaning it's so effective they can use lower doses of pred than with cytoxan.

Sangye
12-18-2009, 10:12 AM
Deb, LOL I'm no expert on ritux, but I do have a decent understanding of it thanks to my Wegs doc.

I went to the pool today to do some exercise. I was feeling stronger and decided to try a few swimming strokes. I was able to do it! If I'd had goggles, I could have done more! They're packed somewhere (I used to be a swimmer), but I can dig them out. This was a huge step forward. Score one for Rituxan!

elephant
12-18-2009, 01:13 PM
Good Sangye! Sounds like your moving in the right direction. So good to hear this!:D

firecracker
12-18-2009, 02:38 PM
I have what they say is limited wegeners. I also am concerned that the mtx wont work for you. I was feeling better before I took it. I felt worse when I did. I was sick to my stomach longer and longer as I took it and when I stopped it, i felt better but as they all say.. feeling better is really not the sign. its the time after you feel better then start feeling pain and more pain then the bleeding starts from the nose again and i got so bad. you should see how swelled up my face is. mtx works for some. and i hope it does for you. here i go about to start imuran. i hope it works. something has to. i can see the destruction. more of it that has happened recently. although i may have some skin issues or not, not sure. i know everything takes forever to heal. the prednisone hike up does help the pain but it doesnt stop what is causing it. i hope for you, the mtx does. make sure they are doing lung scans frequently to make sure your lungs are ok. def use the saline rinses. also, my ent put me on a nebulizer and that really helped a lot. i have three meds for it. betamethasone, tobramycin, and intraconazole. being on these immune suppressants, you need to make sure you are not getting bacteria and fungus/mold that is all over the place in the inflammed tissue or whatever is left in your nose. so mainly i use the beta one but i do use the rest of them here and there.

Jack
12-18-2009, 06:14 PM
Jack, that's true, but my Wegs doc referred to rtx as a "prednisone-sparing" drug. Meaning it's so effective they can use lower doses of pred than with cytoxan.
That sounds like a worthwhile effect that I did not know. :)

Treat yourself to a new pair of goggles!

Brooke
12-19-2009, 12:57 AM
I sure hope the methotrexate works. I have not had any joint pain or skin problems ever. So I don't know if that makes a difference as far as how the medication will work?
I use a vics steamer at night which seems to help keep things "loosened" up in my nose and chest, so I don't have to cough so hard in the morning.
Does anybody else have a chronic cough? Mine is mostly at night and in the morning.

Sangye
12-19-2009, 01:35 AM
I had a chronic dry cough for most of the past 3-1/2 yrs. It's gone now, even though my lungs are still not so great. It'll probably go away as your treatment takes effect.

Brooke
12-19-2009, 02:29 AM
Thanks, I hope the cough goes away. I also have flem stuff in my chest/upper airway that I hope goes away. Sometimes I cough so hard I feel like my eyeballs are going to pop out.
The sinus rinses do help, I get a bunch of crusting/chunks out everyday.
I will be getting another ct scan, lung test, and see my pulmonologist at the end of January.

pberggren1
12-22-2009, 10:56 PM
This is for Brooke and snooz23:

I am curious if either of you know anyone by the last name of Van Boening.

It's just that I am an avid pool player and one of the best in the world is Shane Van Boening from Sioux Falls.

Over and Out,
Phil of the north

Brooke
12-23-2009, 01:52 AM
I have not heard of him. I am not a pool player though! haha.

snooz23
12-23-2009, 06:37 AM
I have not heard of him either...however I have not lived in the SD area for 20+ years. I go home for visits each year but that is about all.

Suzanne

DuaneHart
12-23-2009, 08:15 AM
Thank you. I live in Sioux Falls, South Dakota USA. I have seen a pulmonologist at Mayo Clinic in Minnesota, I don't know that she is a Wegener's Specialist or not but I know she does have more than just one patient with Wegener's Disease.
I use an albuterol nebulizer and am on another inhaler, symbicort.
I live in Rochester and sounds like your symtoms and mine are very much alike. I also take Symbicort and Albuterol and Fluticasone nasal spray. Prednisone is down to 20mg daily and I take Mtx once a week. I hate the mtx and the pred. I'm always tired for about 4 days after I take it. I've had blood pressure med changed so they said that should help. At last count I have 24 different meds that I take daily. Pred has caused a HUGE weight gain and am hoping that I can start getting that off. My drs at Mayo have all been very good--cardiologist, pulmonologist, rhuematologist and my internal med doctor all work together and conult with each other since I have so many medical issues. Hang in there--it WILL get better, at least thats what I keep telling myself!

Brooke
12-23-2009, 08:27 AM
You hang in there too! Sounds like a lot of medication. I too have gained about 20 pounds from that darn prednisone.
What pulmonologist do you see at Mayo clinic? I have seen Dr. Karina Keogh.
Is there a weg specialist there?

elephant
12-23-2009, 08:28 AM
It will get better. It's the journey we have to take and sometimes we get a flat tire and have to ask for help or admit we need to call the doctor. With all the medicines you take there are going to be side effects which is a challenge in itself. Once your/our WG gets into a "remission" or we start to feel better the medicine will be reduced. I tell myself one day at a time, baby steps, then toddler steps, I will skip the teenage steps. :)

Suzanne Patzer
12-28-2010, 04:23 AM
Hi Brooke,

You post came up when I did a search for wegener's and columbus, ohio. Do you live in Columbus? I live here and so does my second cousin, who was just diagnosed with Wegener's. She is in a lot of pain and I believe her doctor told her she only had a year to live. I am very concerned about this. I wondered if you could tell me who your doctor is, and maybe she can get a second opinion.

Thanks,
Suzanne

Sangye
12-28-2010, 04:29 AM
A year to live?? WHAT?? I'm sure I won't be the only member who is trying not to jump through the computer screen upon reading that. Suzanne, you cousin should never step foot in that doctor's office again. Seriously, never. That doctor is unbelievably misinformed. Even a 5-minute google search would show that isn't the case. Wegener's is NOT a death sentence. It can be properly treated and managed. I've had truly horrible doctors, but even they knew better than your cousin's doctor.

Since she's in Ohio, please make sure she gets treated at the Cleveland Clinic. They specialize in Wegs.

JanW
12-28-2010, 04:43 AM
I'm boggling here at the computer, and agree with Sangye. I guess Sangye would already be long dead, and, since I'm coming up on my one year anniversary, I'd be near the grave myself.

Please tell your cousin about the Cleveland Clinic...she needs to get there pronto. There are people here who have lived with this disease for 30 years. It really hasn't been a 'death sentence' in decades.

Brooke
12-28-2010, 06:25 AM
EEEEEEKKKK!!! Have her go to a different doctor!
No, I do not live in Columbus, Ohio. I live in South Dakota and go to the Mayo Clinic in Rochester, MN.

Thakator
12-28-2010, 06:46 AM
Hi Brooke - - My welcome to you as well. You've had numerous responses regarding your upper airway situation as per your original request. Speaking as one whose primary (but not exclusive) involvement of Wegs is in the lungs I would add simply that you ought to keep an eye on that lung spot of yours. Wegs likes the lungs and, from very personal experience, things in there can grow surprisingly quickly. Bad things. So, please keep an eye on it - - just another joyful part of your weggie ride. Ron

freakyschizogirl
12-28-2010, 07:01 AM
Welcome Brooke. I have limited wegs too in my sinuses. And the ever sexy saddle nose. You're not alone...and that is the most comforting thing i found when joining this site.

Jack
12-28-2010, 07:05 AM
That is the most ridiculous thing I have read on the forum (there is usually hardly anything you could call ridiculous anyway ;) ), to the extent that I am wondering if it is true and not some sort of wind up.

Brooke
12-28-2010, 07:24 AM
This thread is a over a year old. I think I'm confused:confused1:

drz
12-28-2010, 10:38 AM
Hi Brooke,

You post came up when I did a search for wegener's and columbus, ohio. Do you live in Columbus? I live here and so does my second cousin, who was just diagnosed with Wegener's. She is in a lot of pain and I believe her doctor told her she only had a year to live. I am very concerned about this. I wondered if you could tell me who your doctor is, and maybe she can get a second opinion.

Thanks,
Suzanne

Does she have some other fatal type disease that prompted the doctor to say that? In any case she needs a second opinion if she has such a severe health problem. Wegener's disease would not be terminal in a year unless she goes untreated.

Sangye
12-28-2010, 02:35 PM
Brooke, you can see the date of the posts right above the member's name.

pberggren1
12-28-2010, 04:18 PM
Welcome again Brooke.

Sangye
12-29-2010, 01:18 AM
LOL It's so nice to meet you again, Brooke. Always a delight. :biggrin1:

Psyborg
12-29-2010, 01:28 AM
Hi Brooke,

You post came up when I did a search for wegener's and columbus, ohio. Do you live in Columbus? I live here and so does my second cousin, who was just diagnosed with Wegener's. She is in a lot of pain and I believe her doctor told her she only had a year to live. I am very concerned about this. I wondered if you could tell me who your doctor is, and maybe she can get a second opinion.

Thanks,
Suzanne

Suzanne,

I live in Delaware, Oh, and I'll echo what others are saying. Have your cousin go to the Cleveland Clinic. I see Dr Villa-Forte and she's fantastic. They have a bunch of specialists and should be able to see her fairly soon. I have no idea why someone would say she has only a year to live, that's horrid. that said she may feel like it's the case if she's in the middle of a Flair and doesn't understand what is happening.

The group at the CC she needs is:
Orthopaedic and Rheumatologic Institute
Rheumatic and Immunologic Diseases
800-223-2273

Thanks,
Bob

Brooke
12-29-2010, 01:31 AM
Thanks for the welcome again!! So great to be here :biggrin1:

Suzanne Patzer
12-29-2010, 06:24 AM
Sorry for the confusion. I got a call last week from my mother telling me my cousin was "dying" and had been diagnosed with Wegener's. My cousin was apparently told she may have a year to live and was making her will and trying to figure out the custody of her daughter. I have not had a chance to talk to my cousin myself yet. I was searching on the internet to find out about wegener's. I did a Google search on "Wegener's and Columbus, Ohio," and for some reason Brooke's entry came up, so I thought she was from Columbus. From what I read in this forum and on other sites, I suspected that my cousin was being told something extreme. My cousin is a breast cancer survivor, but I don't think that has a direct relationship to what is going on with her now. Her symptoms sound like Wegener's. I thank everyone for their input and hope to inform my aunt and cousin what has been recommended.

elephant
12-29-2010, 11:32 PM
Hi Suzanne, let us know how your cousin is doing. I go to Cleveland Clinic in OHio to see a WG specialist. We are here for you and your family.

dunkie2202
12-30-2010, 12:34 PM
Sorry for the confusion. I got a call last week from my mother telling me my cousin was "dying" and had been diagnosed with Wegener's. My cousin was apparently told she may have a year to live and was making her will and trying to figure out the custody of her daughter. I have not had a chance to talk to my cousin myself yet. I was searching on the internet to find out about wegener's. I did a Google search on "Wegener's and Columbus, Ohio," and for some reason Brooke's entry came up, so I thought she was from Columbus. From what I read in this forum and on other sites, I suspected that my cousin was being told something extreme. My cousin is a breast cancer survivor, but I don't think that has a direct relationship to what is going on with her now. Her symptoms sound like Wegener's. I thank everyone for their input and hope to inform my aunt and cousin what has been recommended.
I feel very deeply for your cousin Suzanne. As if the poor girl hadn't been through enough with breast cancer, she had to be attacked with WG. Please tell her to find another Dr, someone who knows what they are doing. We wish her the best of luck. Suzanne you will find a lot of information here and the people are very kind and caring. take care

dunkie2202
12-30-2010, 12:40 PM
LOL It's so nice to meet you again, Brooke. Always a delight. :biggrin1:
bahahahahahahahaha :thumbsup: