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Sheila Schembri
11-05-2009, 12:56 AM
My husband was diagnosed in 2007 after a long battle. He started with a cough that would not go away, ended up in the Urgent Care Clinic on New Years Eve day 2006 as his ribs were excrutiating. He had cracked 3-4 ribs from coughing so much and something showed up on his x-rays of his lungs. After many tests, procedures and finally a left lobectomy they came up with the diagnosis. We were relieved that the diagnosis was not lung cancer (which everyone was leaning towards) but it has been a long road. He does not have kidney involvement and from reading some of your stories it sounds like he is doing okay but we still worry. Hardest part has been his personality has changed. Has gone from being a very happy go lucky positive person to being somewhat paranoid and a real worrier. Hard with two teenagers in the house but we are all just so happy he is still here.:)

Doug
11-05-2009, 02:50 AM
Sheila-

Each weggie finds his or her own path to acceptance. I think your husband would find Jack's responses particularly helpful because he's had WG for over a quarter century, with many ups and down, variations on treatments, bad news to terrible news to worse than terrible news, yet his attitude is one each of us can respect and admire: he doesn't have good days all the time, certainly, but he is generally pretty darn upbeat. Maybe one should say he is positive and realistic.

It sounds like your husband may be over concerned about things like hand washing, perhaps, or the future (which is uncertain even for people in perfect health!), or medical costs, or job security, any number of things, any one of which could weigh Pollyanna to the ground. If you can get him to read the forum, perhaps he can gain a little perspective, or, at least, formulate questions for us or his doctors. Being one's own patient advocate is one way to break through the frustration and worry of being a weggie. Learning all you can about the disease, it's treatment, its prognosis can all contribute to a better sense of being in control. As a guy, that being in control is one thing that concerned me (not being in control, rather!), and that may be at the root of his seeming personality change into a worrier. You know your husband best.

Try to help him accept WG not as some impossible burden, but something he can live with. I don't know what sorts of medications he's on, how his illness has impacted his job or career, but those factors can cause major concern. Insurance is another. There's no end of things to worry about!

We will do what we can, as weggies and family members of weggies. (I'm a weggie who had kidney involvement, am in remission, and am doing pretty well: it is possible to return to a reasonably "normal" life.)

Not knowing what you have seen or found so far, I will recommend that you also check out this source of patient-centered information:

Front Page | Vasculitis Foundation (http://vasculitisfoundation.org/)

Their frequently asked questions section is particularly helpful to newly-diagnosed weggies, but it has value, too, for people dealing with it for the long term.

Finally, reading through some of the new member introductions, you will find that your husband's (and, doubtlessly your!) concerns are amazingly similar to those of people who came before you on this site. You are not alone!

Sheila Schembri
11-05-2009, 03:53 AM
You have nailed him in a nutshell. Had him on the site last night reading a few stories and frankly they scared him to death. Read one story about someone who had brain involvement -- didn't even know that was possible. He told me to keep on the site and read him only the good stories. I am fine with that! It is just so nice to know there are others out there who understand what he is going through. He really does feel alone in this.

Sangye
11-05-2009, 04:26 AM
Hi Sheila, welcome to the group!

I mentioned this on another post recently : My Wegs doc told me that if you've had Wegs for some time without kidney involvement, it's highly unlikely that you'll ever develop it. My Wegs symptoms began in 2005. He said he'd be absolutely shocked if I ever developed kidney problems. This is fairly new info. They used to think kidney involvement was inevitable. So maybe hubby can take "Must worry about kidneys" off his to-do list! :D

I've had some horrific complications (eg increased brain pressure). So your hubby might read about that and worry. But even my JH doc has never seen another Weggie with it, and he treats Weggies all day every day.

Barbara1966
11-05-2009, 04:42 AM
Sheila,
If the cough ever go away? I was diagnosed with WG in August this year and still cough my brain out, my whole upper body hurt so much I'm afraid to sneeze and all the cough medication don't helping at all. Please advice.

Sangye
11-05-2009, 04:56 AM
Barbara, cough medicine won't help if it's Wegs-related. If you're still coughing badly after several months of treatment, it sounds like the treatment needs to be adjusted. What does your doc say?

Jack
11-05-2009, 05:44 AM
I developed a cough about seven years ago which was eventually diagnosed (lung biopsy) as Bronchiectasis. It is not a very treatable disease and although I use a couple of inhalers I cough constantly.

There is no established link between this disease and Wegener's (although I suspect there might be), but if you have an unexplained cough, you should get it checked out.

Doug
11-05-2009, 07:09 AM
You have nailed him in a nutshell. Had him on the site last night reading a few stories and frankly they scared him to death. Read one story about someone who had brain involvement -- didn't even know that was possible. He told me to keep on the site and read him only the good stories. I am fine with that! It is just so nice to know there are others out there who understand what he is going through. He really does feel alone in this.

Fortunately, most of the weggie experiences are reasonably suitable to tell someone who is dealing with terror. I think that's a fair statement: at one extreme, people die from it, but, these days, treatment is straightforward enough most times that a new weggie has a about a 92% chance of surviving in some form or other!

Barbara1966
11-05-2009, 09:23 AM
I just have an open lung biopsy done last week and all the results just WG. The doctors are saying that the cough should go away in time, currently I'm on 40 mg prednisone per day, 1250 mg cytoxon a month and I have an inhaler "Proventil" that is helping with the breathing plus some other antibiotics.

Doug
11-05-2009, 12:07 PM
Barbara-

I'm encouraged to see more and more of you newer (or quieter!) members starting to speak up with your own experiences in support of new members trying to deal with the new realities of WG!:)

Sheila Schembri
11-07-2009, 05:31 AM
Sorry he does still cough although not as bad as in the beginning. If he gets a cold -- and he does quite a bit it is worse.

Sheila Schembri
11-07-2009, 05:34 AM
Sorry forgot he does use a puffer which does seem to help.

Doug
11-07-2009, 12:21 PM
Barbara- Did we miss you in all the crossfire? If you have wracking coughs, as it sounds you do, there's a good chance your medication needs adjustment. Help me somebody, but I recall the cough- we all know the cough!- went away within a month of the start of treatment, maybe sooner. I had an upper respiratory infection about the second month that lasted till the end of the third month. I don't think that was the WG cough you still have, Barbara.

Anyway. Ask your doctor, please. I hate to think you are suffering unnecessarily, sweetie, and hurting ribs is unnecessarily in my book. Also, as a weggie, you are immuno-suppresed, which makes you more susceptible to infections. If your cough is related to an infection, your doctor should be able to help you there, too. But, if they don't do a culture , they may be treating a WG symptom with antivirals or antibiotics, which will not work.

Please let us know what you find out. The cough is one of the most trying of the common and long-lasting WG symptoms, and one that is misdiagnosed, wrongly medicated, and longest lasting as a consequence.

Excuse me for calling you "sweetie", too, but my empathy button was activated when I read your report. The cough is so, so wearing, and, in my case, it ruined sleep, left me miserable and tired. My riubs hurt. Like you, I treated it with cough medication. (Nyquil- you know, just the ticket for treating a potentially fatal disease!)

Mike
12-24-2009, 11:47 AM
My daughter Tracey developed Wegeners in 2004. She was 24.

They treated her for pnumonia for two months until she was so weak she could not stand or walk. She could not even stand the pressure of the bed sheets on her legs. When they found out it was Wegeners she was seriously ill and sent to London University Hospital where they saved her life.

This past year she came out of remission and was again treated for pnumonia until she was sent to Hamilton and the kidney clinic at St. Jos's and McMaster. (it was a Wegeners flair up)She is now doing fine. She is again doing Chemo.

Good luck, we live in Guelph.

Tracey's Dad (Mike)

renidrag
01-03-2010, 02:10 AM
Sheila: These people answering our questions are "venerable veterans" of WG. I have followed them quietly since last August to make sure I was doing the right things and seeing the right people. I can't thank them enough.
Barbara: I started out on 80 mgs of Prednisone and 200mgs Cytoxin a day with the cough. Simbicort inhaler with Albutirol rescue and an antibiotic. Are you seeing a specialist? Sounds like a case for Sangye.
Dale

Sangye
01-03-2010, 02:23 AM
LOL-- Getting Weggies to Wegs specialists is my favorite nag.

I've learned one thing for sure: every one of us needs a Wegs specialist overseeing our care. Wegs research is moving rapidly the past couple years. Regular rheumy's can't keep up and just don't see enough Weggies to have a good feel for the disease and its bizarre presentations. Wegs specialists are less likely to overtreat or undertreat. In observing fellow Weggies, I notice those treated by Wegs specialists tend to have less anxiety about their care. They feel heard, understood and believed. Any one of these factors can contribute to longevity and less damage.

pberggren1
01-03-2010, 02:26 AM
Well put Sangye.

Those words will better prepare me for my upcoming visit with my Rheumy.

Barbara1966
01-03-2010, 11:07 AM
From begining of December my rheumy refer me to Yale - New Haven hospita to see rheumy Dr. Liana Fraenkel and pulmonary Dr. Richard Matthay.
At Yale, they increased predinsone to 60 mg a day and we switched to daily dose of cytoxon 150 mg, and I'm doing much better now then in November.
My cough and breathing improve on advier 500/50 I think or the meds, anyway today is day # 15 that I feel good.

elephant
01-03-2010, 12:29 PM
Barbara glad your feeling better. I have the advair diskus 250/50 and have not used it yet. I'm not short of breath everyday and don't want the added side affects. My pulmonologist wants me to try it for two weeks and see if I would like it. How do you like it?

Sangye
01-03-2010, 12:35 PM
Barbara, are those Wegs specialists?

When I switched from my local docs to Mayo (Arizona), the docs were WAY better but still were not Wegs specialists. The Mayo rheumy always wanted me back on major high dose pred, but I knew it wasn't necessary. When I finally got to JHU, my Wegs rheumy said it would have been a terrible mistake to do it. If my current flare had happened while I was at Mayo, I don't think I would have done well.

Barbara1966
01-03-2010, 10:43 PM
I hate it, but helping me to breathe easily and also decreased the coughing, but with every puff feels like I have sand in my mouth and throat, my throat has a tickle like you need to clear that every couple of minutes even after I rinse and brush my teeth. Also my tongue is very tender and numb. I'm using this for last three weeks and the numbness getting better.

Barbara1966
01-03-2010, 11:28 PM
Sangye,
They claiming that there are, the prednisone was increased because when we draped to 35 mg a day, I got so bed, I was not able to breath, and hardly walk. This is why my local rhemy send me to Yale. At Yale they switched me to daily cytoxon and increased pred and it is helped. My next visit is on Monday and the prednisone should be decreased.

My case is little complicated because of the TB ( I was vaccinated in Poland for the TB as a child and every test is positive) but finally at Yale they came to one conclusion that I do not have TB. The new pulmonary take his time to listen to me and really review all the slides and x-rays, everything.

Finally they concentrate on Wegs.

Sangye
01-04-2010, 02:16 AM
It must be very complicated to have a false positive for TB! TB and Wegs can look very similar on x-ray, as you've learned!

I hope the new treatment continues to work well. Your cough may go away with Wegs treatment. I had a dry cough for a few years, but it seems to have disappeared. It wasn't a big deal, just annoying.

Doug
01-04-2010, 01:25 PM
Barbara- In our own ways, we celebrate with you for feeling better, especially for the 15th day! I know the first day I felt good, not just better, was a profound and joyous moment. I have no doubt you will treeasure that special moment you felt that revelation, too!

mikecaven
01-06-2010, 06:46 AM
Here is a word of encouragement for your husband and you. I first got Wegeners in 1981 at age 34. It stayed in remission until spring 2007. That was 26 years of remission for me. It came out of remission in '07 and hit my kidneys harder this time...causing anemia. So I went back on 150 mgs of Cytoxan and 60 mgs of Predisone (same as 1981). 3 months ago I came off and now take 6 Methotrexate tablets one night a week along with daily Folic Acid tablet. I am back to my same old self again....feeling normal. Labs are normal (the only issue is my Creatinine level is a little high).

Hopefully this will encourage your husband and you. Mine may come out of remission again...but I will immediately know it when it does. The routine is to have labs every month with monitoring from a Rheumatologist and Nephrologist every 3-5 months. Life's good again. I am now 62, work out daily, play golf weekly, work hard, and feel great. I know how overwhelming it can be...but there is light at the end of the tunnel.

Sangye
01-06-2010, 07:56 AM
Mike, I continue to be stunned and thrilled by your case. I hope all Weggies can have an outcome like that!

elephant
01-06-2010, 08:10 AM
Mike, I am thrilled and amazed that you were diagnosed correctly in 1981. Were you in Texas or a big teaching hospital? In 1981 I was falling apart and the doctors at Children's Memorial Hospital in Chicago did not have a clue it was Wegeners. They new I had a autoimmune disease, but didn't know what. I was finally diagnosed in 2008! I am glad you are doing great Mike!

pberggren1
01-06-2010, 10:07 AM
When I think back when I was diagnosed it is truly amazing. I knew I had some sort of Auto-immune disease and I communicated this to the ER doc who is now my Nephrologist and he came back 15 minutes later with a diagnosis of WG. Sangye, I hope you find more releif soon. And Mike, I am amazed as well and wish you all the best and another 26 years minimum of remission.

Doug
01-07-2010, 06:40 AM
I'm from a small community that's 4-1/2 hours or so away from the nearest teaching hospital with a rheumatology department with doctors who have any regular contact with WG patients, yet a Physician's Assistant correctly determined I had an auto-immune disease. Because I had pulmonary issues greater than the kidney issues at that point (though the kidney issues were pretty grim), the PA turned me over to a pulmonologist who comes twice a month to a specialty clinic (it happened I was admitted to the local hospital on a Monday, and the pulmonologist was scheduled for the coming Friday). The PA had ordered several blood and urine tests during the week, including a "stack", I think they called it, which was saving your entire urine output for 24 hours to establish kidney function, perhaps other things. When the pulmonologist arrivewd on Friday, he had had already seen my medical reports up to Thursday, and was able to give a preliminary diagnosis of WG. That Friday, I was sent to the regional hospital with which the pulmonologist is associated, and he had ordered a lung and sinus biopsy as soon as I arrived there. I was in that hospital long enough for them to determine drug therapy (based of what the head of the department of rheumatology advised my pulmoinologist to do in my case) wasn't working: I was losing ground, so they sent me to the university hospital, where rheumatologists guided all the other specialties through a course of treatment that saved my life.

Whew! Having written all that, my point is that getting the right treatment in time seems to be mostly a matter of luck of the draw. I lucked out in that a PA knew when to turn me over to a specialist, who knew when to turn me over to WG specialists. My treatment and recovery to a state of remission was relatively uneventful. The only problem I had was hospital billing departments that coulodn't get it straight that not only did I have insurance, I had the highest level (private room, no expenses after $1250 maximum, and so on) my company had available. They collect all that information at the emergency room door before they even let in, yet, in my case, it seemed they never could communicate that information to the billing department. One time they hit me just as I came back from my third session of dialysis, then plasmapheresis. For those who've been through this, you know you are in a medical state where all you want is to get into bed and sleep! In this case, the nurse was walking with me from a wheelchair to my bed when the lady from the billing department comes asking for my insurance card to settle the matter of whether or nor I had insurance (!~). I was in a hospital gown, of course, and I told her it was in my jacket pocket, in the patient's closet. So I turned to go there to get it, and the next thing, I'm seeing nothing in color. It looked like I was in a blizzard- all white and fuzzy. An hour later, I came to, and was told I had been given a blood transfusion and something else. They'd put me on a blanket, and a blanket over me. The billing department lady had disappeared by then. I hope they gave her hell, but I don't know.

Sheila Schembri
01-07-2010, 06:57 AM
Thanks so much for your encouraging words Mike. We had a wonderful Christmas and are feeling very optimistic. Just before Christmas were given the good news that they feel he has been in remission for a year now and hope to decrease his Cyclophosphomide next year at this time. Other than a major nosebleed last night (first one in months and I am sure attributed to stress not at all related to his WG) things are wonderful!

Jack
01-07-2010, 08:05 AM
Sheila - are you saying that he has been on cyclophosphamide for a year and they intend to keep him on it even longer? It is a highly toxic drug with long term implications for serious side effects that do not go away when you stop taking it. The effects are cumulative and he may need to use the drug again if he has a flare in the future. Take it for too long and it will not be available to safely use again. I have pretty much used up my own allocation and will be hunting for an alternative if I need to stop a flare.

The usual regime is to switch to something like azathioprine after about six months.

Sangye
01-07-2010, 08:30 AM
Sheila, I second what Jack said. Ctx is never used to maintain remission-- only for the first few months of highly active disease, to get it in remission. Then they switch to something milder like azathioprine, methotrexate or Cellcept.

I've never heard of someone being kept on ctx once they're in remission, much less for an additional year. Given the incredible toxicity of that drug, I would seriously question the recommendation from those docs and get a second opinion from a Wegs specialist. Do you know how to find one?

Sheila Schembri
01-08-2010, 02:40 AM
Sorry brain fart. He was on Cyclo for over almost two years (we do worry about that). He has been switched to Imuran which they tell us is safe with no long term effects.

Jack
01-08-2010, 03:07 AM
Imuran (azathioprine) is indeed much safer, but after a while, he should be moving on again to something like Cellcept.
I can hardly believe that he was kept on Cyclo for two years, but there is not much you can do about it now.

Doug
01-08-2010, 03:19 AM
Is he under the care of a WG specialist or a regular doctor? The Ctx usage is plain wrong! Sheila, please use this link to locate a WG specialist. Others on this site have called doctors listed and have had good results in locating specialists within their area.

Front Page | Vasculitis Foundation (http://vasculitisfoundation.org/)

Sangye
01-09-2010, 04:01 AM
Please tell me he isn't still under the "care" of the doctor(s) who kept him on ctx for over 2 yrs.