Why I am grateful to have Wegener's

[Minneapolismark]

OK, I am not crazy, so I am not actually happy about Wegener's. On the other hand I have gained much by having it.

-- my lack of energy has forced me to empty my day of all but the most important things in life.
-- I married my beloved now rather than later.
-- I realized that I will not be defined by a disease or a demographic factor.
-- I have decided that I am not a victim
-- I have had to overcome my aversion to solitude
-- I have started taking much better care of myself
-- I have faced the possibility of my own mortality. You can't really live until you are prepared to die IMHO
-- I cherish the good in each day.
-- I have, in my solitude, fatigue and pain faced and come to peace with many old emotional wounds and hurts
-- I have found the courage to choose to live as fully as possible every day that I have
-- I have decided to hope and not despair
-- I have found that it is OK to have bad days, be afraid, get angry, be sad, despair, lose perspective

[Sangye]

I feel the same way. I've also learned that I can be grateful for Wegs in general but still be upset about the day-to-day suffering it causes me. I've had people tell me that if I were truly grateful I'd be smiling about it all the time. They usually get an earful from me. LOL

[Jack]

I just think it is crap. I'm sure I would not be a better or worse person if I did not have the disease, but I would be able to do stuff and not be in pain all the time. I'm sure I could work out some positives, but I don't feel the need. I don't go around depressed, I just accept my lot and get on with what little I can.

[elephant]

I am happy to be alive today and thankful that I can eat, breathe, talk, hear and walk. I do have a little envy and jealousy of others who can do more and live their life less limited.

[Minneapolismark]

I just think it is crap. I'm sure I would not be a better or worse person if I did not have the disease, but I would be able to do stuff and not be in pain all the time. I'm sure I could work out some positives, but I don't feel the need. I don't go around depressed, I just accept my lot and get on with what little I can.

Thanks for the candid response Jack! I really do appreciate it. For me this has been a spiritual experience in many ways. In many other ways it has been pure crap too.

I also think it is crap that I am fat and 52 years old, and have so far NOT found a spiritually redeeming value in either. :wink1:

But yes, the whole thing is generaly crappy crap crap crap. Still... I have learned much from the experience. I've never had anything slow me down before. Honestly I have always been able to knuckle under and motor through anything and everything... until now. I wouldn't wish it on myself, but for me it has been worthwhile.

[Minneapolismark]

Hmmm.... not proud of this, but another advantage is that I can get seating in most restaurants immediately. I just tell them I have an incurable autoimmune disease. I started doing this to lighten things up for my three boys, because I didn't want them to see me defeated. I am transparent with them, and everyone. But I refuse to live in fear or defeat. I will never surrender to being "poor little old me."

Another benefit - I do less housework. :thumbsup:

[Minneapolismark]

On the plus side I have a legal right to take narcotics.

On the negative side I need them.

[Sangye]

Mark, Wegs isn't "probably terminal." I tell people it can be life-threatening, which is true. I sure don't want to interfere with you getting fast seating in restaurants (especially since you're on pred!)--I'm just pointing this out to newbies who might not know. :wink1:

[JanW]

In fact, WG is not only not terminal, it's doesn't even necessarily shorten the length of your life. There simply hasn't been enough research in this area.

It can be life threatening and life ending if not treated with the 'respect' it deserves by healthcare professionals, and we have seen that right on this thread.

Wegs means business.

[Minneapolismark]

Right. good point. my doc had originally described it as such. The official phrase seems to be incurable with a high degree of morbidity.

[Minneapolismark]

Still 75% mortality at ten years...

[JanW]

It is incurable but I would bet that the rate of death from true WG (ex co-morbidities), is probably in the less than 15 percent range, and that there are comparable numbers in the 'single flare and never again' category. Both are fairly unusual to encounter.

What I've never been able to suss out is the number of people actually disabled by the disease. That might be a scarier, larger number.

It's actually a little worrisome to me that your doc referred to it that way (although, I know, you said he's a sweetheart of a guy). That's just not the modern thinking at all. Expert docs think that with good, effective and (probably) quick treatment, this is a manageable, chronic illness. They routinely refer to patients who have gone on to have children, live normal lives, etc., etc. -- all while being seen a few times a year or occasionally having a surgery. Even when my doc was showing pictures of people who had suffered the ill effects of pred and ctx (in the context of showing people for whom he had corrected a saddle nose) they were 15 year old pics and those people were very much alive and doing well.

[Minneapolismark]

But the Journal of Rheumatology still puts mortality at 25% at five years and 75% at ten years. (please see my posts under "Wegener's Statistics.")

Whether mortality is from the disease or from co-morbidity seems moot to me. This is important to acknowledge for several reasons:
1. although we don't want to scare anybody, this is NOT a disease you can take lightly.
2. just because you can possibly struggle back to work does NOT mean you should do so. Resting isnt just a convenience it is a necessity.
3. getting the right physician is critical. Yes I know I need to heed my own advice on this, and am doing so.
4. don't ignore symptoms or other illnesses that pop up
5. own your own disease and its treatment
6. be realistic about planning your day, your week, your month and your future

7. the seriousness of the disease may convince the IRS, your creditors, your insurance company and other organizations to assist you more than you would imagine. This has been true for me. The IRS was super helpful when they realized how serious my situation was.

I don't plan to die from this, at least not anytime soon. At the same time I can't take my eye off my recovery either.

[Minneapolismark]

At the same time fear is useless. The fact is that if you are on this list then you are probably taking your disease seriously. In the healthcare industry (my former career) we categorized patients by level of engagement. This meant the degree to which they interacted, learned, participated and drove their treatment and recovery. Level 5 (the highest level of engagement) patients do very well. Level 1 (lowest engagement) patients do very poorly.

So if you are on this list I am willing to bet you are NOT one of the people who will die from this or its co-morbidity diseases!!!!!!!!

On the other hand patients are way more likely to become fully engaged if they understand whatever facts are available and face the seriousness of their disease. Patients in denial are way less likely to engage at level 5 and much more likely to die.

Now please understand that I am not saying anyone here is low engagement. Quite the contrary.

But much of my strategic planning work was aimed at changing healthcare to more fully engage the patient in the care process. And now I have a perfect test of my own convictions.

BE A LEVEL 5

[JanW]

What year are those stats from? I still think 25% in five years is high, particularly if someone is diagnosed in midlife or younger.

[Sangye]

There is no way the 75% mortality at 10 years is true. The VF docs don't treat Wegs as a death sentence, as regular rheumys often do. (When I got to JHU Dr Seo had to drive it into my head that it wasn't a death sentence, as I had been told.)

I will say that every single death in this group this year was of a patient who did not have a Wegs specialist and was not receiving adequate care.

Whether someone dies from Wegs or a co-morbidity is HUGE as it indicates very different efforts need to be made in managing the disease. For example, because so many Weggies die from infection and cancer and not Wegs, the Wegs specialists are learning to get patients off immunosuppressants as soon as possible. This is an enormous change in protocol. Most of Dr Seo's treatment decisions for me are made based on the fact that he considers me (47) young, and doesn't want me on these drugs for the next 40 years.

The only death sentence with Wegs is not being treated when necessary.

[Minneapolismark]

Could well be. 2006 was the date of the article. I have been unable to find more recent stats.

Doctors who are not "in the know" about Wegener's will tend to GREATLY under-estimate the seriousness of the disease, the criticality of the treatment protocol and the need to pay attention to random symptoms and details. In short, the uninitiated doctor will not tend to take the Weggie seriously, and this could very easily prove fatal. I do know that mortality is closely associated with the competence of the care provider more than anything else. Number two would probably be the engagement of the patient in the treatment process. FACTS are our best weapon against ignorance. Stats from a prestigious journal are a great tool in sharpening the attention of our care providers. If someone has different stats from a doctor then by all means share them. For right now these are the best documented stats I can find.

Again I am willing to bet that the degree of engagement on the part of the patient strongly influences outcomes. engagement is usually driven by a fair assessment of the seriousness of the situation. Not exaggerated but informed

One of the respondents to the survey on this site listed their only Weggies medication as an anti-biotic. If I was that person I'd want to know that it is imperative that I immediately get to a competent doctor and find out if that is an adequate protocol.

[JanW]

As to someone being only on an antibiotic, that person could be on bactrim as some kind of maintenance dose for sinus issues and in fact be off all immunosuppression. S/he could certainly be being adequately treated because s/he is in remission. Or, if I had answered the questionnaire while I was waiting for surgery, I would have answered "none" to the medication question, because my rheumotologist didn't want to start immunosuppression prior to surgery (I had had issues with liver enzyme issues on a test dose of mtx). Yet I was still being adequately treated.

I hope that I can answer a similar questionnaire within a year with the answer: none. Because while I will always be a weggie, I will also always hope for a medication free remission. As Dr. Seo would say, I do deserve a shot at that.

[JanW]

To your other point, I think that docs not in the know would tend to in fact UNDERTREAT the disease while simultaneously OVERESTIMATING the destruction that the disease must enact upon the patient. So you get docs who really do believe that the disease is a death sentence giving people tons of pred and keeping them on ctx for a year and yet not really understanding that the right protocol will likely get the person into remission. I met people at the Symposium who had been fired by their doctors for complaining about things like debilitating joint pain because, essentially that was to be expected with this horrible disease. People that were called whiners because they were going deaf and that's just what "wegener's does." In fact, Dr. Merkel of Boston said that even by experts, he believes loss of hearing has not been taken as seriously as it should be because in the scheme of things that could happen, it's not the worst. Funny, the one thing that I found that everyone took seriously was the saddle nose (you wouldn't believe how often patients will have an unknowing ENT offer to 'fix that.'). My theory is because looking at that nose really bothers THEM. Other than loss of self-image/esteem, it's rarely the worse of a weggies problems (particularly lots of us also have windpipe issues).

[Minneapolismark]

I do think we are in violent agreement! 25% at five years and 75% at ten is from a variety of sources, most notably the Journal of Rheumatology. This stat is four years old and includes everyone everywhere, including those treated by ineffective doctors.

Though no stats are presently known, we have good reason to believe that effective specialist care, an appropriate life style, and staying actively engaged in the therapeutic process means we are probably going to live a long time.

But still the stats are what they are.

I would be OVERJOYED to have someone offer better and more recent statistics, but until then these are the best concrete facts i have on mortality.

[JanW]

I will grant you that if these stats also reflect patients for whom WG was discovered at autopsy and there had been no attempt at treatment, you could reach that 25 percent in five years number.

I don't buy that 75 percent of people will be dead in 10 years where the primary cause of death is WG, however.

I'm only coming up on one year diagnosed, and have met a lot of weggies though, so I will allow that my view could be skewed.

[elephant]

I could see the 25 % percent range in five years because of wrongly being misdiagnosed ( JanW re: autopsy) or WG patient not getting the right care because of ( financial, not understanding severity of the disease, too far to get to a specialist) and thinking that their primary care doc / Rhuemy non specialist can't really handle this WG.
I am with the rest I don't agree with the 75% of us dead in ten years. I had this disease for a very long time( over 30 yrs) and I was even misdiagnosed/ non-compliant with medication/ medical mismanagement/kidney failure....I am still alive and kicking! I have been on medicine for 30 years, never been medicine free and I am 45 years old. That is pretty darn good, I think!

[vdub]

Really a super interesting thread. Personally, I'm PO'ed as heck that I have this disease. I feel bad or, at least not normal, most of the time and I know that feeling is as good as it's going to get pretty much forever.

As already mentioned, one good thing about wg is that it does make you think about things in a new way and face your own mortality. As for me, i'm figuring on 6 to 8 years from now. I believe that way partly because of what has already been said, but I also have to add on top of the wg my panhypopit issue (which was caused by the wg). One study from the UK (not having anything at all to do with wg) said that being panhypopit causes a 1.3 to 2.2 fold mortality rate above an otherwise healthy person. It doesn't take to much cipher'n to figure out that my days are limited. That having been said, no doctor has every even hinted that my days are numbered. But I can do the math....

[Minneapolismark]

I'm with ya vdub.

I can't move my left arm above mid-chest because of the incredible pain in my shoulder. I get these back pains that feel like a large nail has been driven into my right shoulder blade. I have been having terrible sharp pains in both calves. I have that "broken glass" feeling in my knees. I am always winded and often paranoid. I post something and then fear that I will have hurt someone or caused them to be angry and fret about it.

I forget major things. I lose focus. My hearing goes in and out. My vision gets blurry... for the first time in my life I am physically weak.

And this is me responding well to treatment. This is me with SED rate down around ten from over 100 and I am this sick.

Before treatment I was a real mess. I was actually paralyzed intermittently. I was bleeding from major orifices. I coughed up blood for a while but then it stopped. One night in particular I felt a terrible cold deep in my body and knew that I was very near death.

I don't like being weak. It kills me that my beautiful wife drops me off and picks me up at church, restaurants. She has to do the majority of the housecleaning and shopping. She has an executive job.

I don't like not being able to sit upright for more than an hour or two most days.

I don't like the times when I could not get my jaw closed because my jaw hinge has been pushed out of position. (this has not happened in a long time)

I was very angry that I could not run, jump, play. I hate being hauled in a wheel chair at the airport.

My plan to climb Kilimanjaro is probably off for a while, maybe forever.

I hate the disease.

Never the less there have been benefits. would I voluntarily get the disease to learn these lessons? No, of course not. On the other hand I simply won't let this experience go to waste. So I have passed through the Kubler-Ross stages and am now at acceptance.

I don't like that my hands are numb some times. I don't like that I can't sleep much, or I can't wake up depending on the day.

But I am not simply going to roll over.

And even with all this crap, life is still big and bold and amazing. There is still so very much that I can do, and instead of imploding I intend to grab every second I can get my hands on. I intend to make each day suck as little as possible. And there have been benefits to this experience.

I found that I am strong enough to not only cope but live large.

[Minneapolismark]

I could see the 25 % percent range in five years because of wrongly being misdiagnosed ( JanW re: autopsy) or WG patient not getting the right care because of ( financial, not understanding severity of the disease, too far to get to a specialist) and thinking that their primary care doc / Rhuemy non specialist can't really handle this WG.
I am with the rest I don't agree with the 75% of us dead in ten years. I had this disease for a very long time( over 30 yrs) and I was even misdiagnosed/ non-compliant with medication/ medical mismanagement/kidney failure....I am still alive and kicking! I have been on medicine for 30 years, never been medicine free and I am 45 years old. That is pretty darn good, I think!

Actually, in the case of misdiagnosis and improper treatment, the statistic is 95% fatality at five months.

AGAIN THIS DOES NOT MEAN THAT ANY ONE OF US HAS A 75% CHANCE OF DYING AT TEN YEARS!!!! I agree with you on that. :hug1: :thumbsup: These statistics do not mean that any of us personally have these odds.

These statistics mean that the Weggie population as a whole has these statistics. So YES this includes those who were not diagnosed, those who were improperly treated, those who didn't get engaged in their care, those who just didn't do the right thing, those who got depressed and gave up, those who didn't wash their hands after they pooped, etc.

But these ARE the statistics. So for each of us we could say that the chances of survival at ten years is 25%, but add 25% if you have a good doctor, and add 25% if you are super engaged in your care. But folks we are in the fight of our lives.

And our doctors are only going to be as good as the information they have about our disease. If they are too pessimistic then they will over treat. If they are too optimistic they will under treat. :hug2:

I would be absolutely ecstatic to have someone provide statistics that show the 2006 stats from the Journal of Rheumatology to be wrong! These aren't my stats. :wink1:

Also Elephant, you may just simply be one of the 25% who makes it.

[vdub]

Ah, the paranoia..... Ever had steroid psychosis? Dang, I never want to feel that way again. Ended up in the ER and then in the psych ward for a night until the steroids went thru my system.

I don't think anyone is "typical" wg. I'm getting the sense that it affects all of us very differently. I'm on treatment drugs for the wg -- mtx and then, of course, folic acid because of the mtx. But for the panhypopit, I'm on cortef, levothyroxin, desmopressin, testostorone, B-12, and Vitamin D. And, to counteract all the side affects of the drugs, I'm on celexa and ambien. There's just too many darned drugs. I have headaches ranging from mild to OMG most all the time. I thought the granuloma was growing in my head again, but an MRI proved different. I guess the headaches are just something I have to accept and live with.

[Minneapolismark]

Ah, the paranoia..... Ever had steroid psychosis? Dang, I never want to feel that way again. Ended up in the ER and then in the psych ward for a night until the steroids went thru my system.

I don't think anyone is "typical" wg. I'm getting the sense that it affects all of us very differently. I'm on treatment drugs for the wg -- mtx and then, of course, folic acid because of the mtx. But for the panhypopit, I'm on cortef, levothyroxin, desmopressin, testostorone, B-12, and Vitamin D. And, to counteract all the side affects of the drugs, I'm on celexa and ambien. There's just too many darned drugs. I have headaches ranging from mild to OMG most all the time. I thought the granuloma was growing in my head again, but an MRI proved different. I guess the headaches are just something I have to accept and live with.

No, there definitely is no typical Weg. I don't know that I've experienced steroid psychosis, but then a psychotic probably wouldn't know, would they? :lol:

It is getting better for me, but early on in my treatment it was pretty tough. I had to tell my sons (24,22 and 14) that if they get a text from me telling them that I love them, or asking a question like "are you OK?" or "do you still love me?" to not analyze it but just answer it as quickly as is convenient. I explained the whole side effect thing.

But I seem to have settled down a bit over the past couple of months.

[dunkie2202]

On the plus side I have a legal right to take narcotics.

On the negative side I need them.

Just out of curiosity what narcotics and why would you need to take/use them?????

[Minneapolismark]

Vicodin. I have a great deal of pain.

[vdub]

I was on morphine for about a week. Great stuff! Not sure what kind of e-mails I sent out, but have heard rumors.... :-)

[Minneapolismark]

Sadly I can take up to two of the big Vicodin pills at a time (I don't remember the dose and don't feel like walking down the hall right now). Sadly I don't get any kind of high from it and it just barely touches the pain.

Don't these drug companies have marketing departments??? These drugs are expensive and should at least give me an overwhelming sense of euphoria. :lol:

[dunkie2202]

LMAO @ vdub

[dunkie2202]

Sadly I can take up to two of the big Vicodin pills at a time (I don't remember the dose and don't feel like walking down the hall right now). Sadly I don't get any kind of high from it and it just barely touches the pain.

Don't these drug companies have marketing departments??? These drugs are expensive and should at least give me an overwhelming sense of euphoria. :lol:

Mark when were you dx? What other med's and or treatments are you having??

[elephant]

Mark, you mentioned that you can't lift your arm above your shoulder. I had that when my WG was very active, once my WG was controlled my joint/back pain went away. You mentioned that you might go on RTX, I am wondering if your doctor also thinks the MTX is not working for you. How long have you been on MTX?

[Sangye]

Mark, if you're having so much pain that you require daily painkillers, that's usually a sign of highly active Wegs. I also had the shoulder pain (and every other joint involved). I suspect the mtx is not strong enough (or a high enough dose) to get your Wegs under control.

[JanW]

I agree with Sangye. I have to say that you case sounds classic for rtx or ctx. Diffuse symptoms, lots of pain, extreme fatigue, short-of-breath. You're in a wheelchair and (it sounds like) you can't drive. Your case has all the hallmarks of something that should be taken seriously with an extreme sense of urgency by your doctors to avoid, for example, major organ failure.

This is also effecting (obviously) you attitude about WG in general, and your focus on the mortality rates from the disease.

As for the 95 percent death rate within the first five months with no treatment, all it's got to say is that there are plenty of 'dead man walking' around this joint. The story of the typical wegs patient is the story of years of misdiagnosis because the disease is so rare.

[Sangye]

LOL "Dead man walking." So true! :laugh::laugh::laugh:

[Jack]

I too don't believe that the statistics for untreated Wegener's are correct going by the number of people on the forum who have had symptoms for years before diagnosis. However, there is no doubt that it will get you eventually if left alone, again this is supported by the stories you read here about the many of us who went to the edge defore treatment saved us.
If properly treated, the prognosis is now pretty good and it may be something like a heart attack which may even be secondary to the main disease that finally kills you, or it could be a bus! ;) Sangye has already mentioned that the members we have lost seem to have been mistreated and this drives the constant nagging to visit a specialist. It is sad that people still have to rely on a website for advice about the drugs they should be taking, precautions to follow and when urgent action is required. The doctors should be providing all this.

As for your own mortality - yes we are all going to die, but the statistics only apply to other people and not to you! Not today anyway. ;)

[JanW]

Yes, when I see people here really come off the precipe of death and yet continue to receive medical advice that is counter to what I heard from the experts (and my own docs) in the summer, I always think that was more dumb luck than anything else. Because really, some of the treatment that I have seen here for stuff like subglottic stenosis is astounding. And the 'good' docs know it too, but what can they say except 'you need to see a specialist?'' There's no way that you can expect the typical rheumy to get up to speed on this stuff -- it's not even fair to expect them to be.

We forget sometimes with all of the technology, and all of the research, that medicine is still very much an art and (should be) a hands-on professional. Someone who is being treated as a 'textbook case' of wegs is someone who is probably receiving substandard (or at least outdated) care because there *is* no textbook.

[LisaMarie]

Ok when I was first told I had this lovely disease...I was told 1-5 yrs without proper treatment and because I have it in atypical places it is harder to treat ......and if I did survive I would not have the same life and needed to adjust to a new way of life....talk about being mad ...Lord help...i did not hurt anybody back then...yes at times I am mad ...not I am not grateful for any part of this disease ...but i can not change it so I must learn to deal..adjust ..tweek my life...I can not take pain killers since I am a light weight and they put me out for 2 days....can not work or take care of children in a stipur state...Once the doc put me on flexeril and darvocet for a back injury I was on 1/2 tab flexeril and 1 darvocet and my children swear i told them they could eat all 4 big packs of oreos for dinner because i was too tired to cook and they ate all 4...my husband flipped...he came home to me asleep on the sofa and the kids running around like banshees...so i mediate for the pain or deal....i have a strong denial path when it comes to sickness or pain and was raised to get up and get it done cause no none gonna do it for you...it looks good at work as a work ethic but it 'll kill u if you ignore yur body with this disease so I have many people helping me remember to take it slow and listen ...not easy for me....I will say I may be more sentimental and weepy eyed since I am not sure when I will leave this earth ...but as my grandma always said ."there are no guarrenttees in life except death and taxes"...we all are born to die sometime AND we can not choose when...so I will try to continue to adjust and love my babies more each day I have with them.....Hope you get your pain undercontroll and if you try rituxen it works for you...i am praying cellcept works for me up to 1500mg...will start 2000mg on Sunday then maybe be able to decrease prdnisone to 30mg daily on the 28th...wish me luck...stilll have that congestion but gonna wait it out and hope it is just a side effect like Sangye said she had ...mine is just deeper down...get scoped next week to see if I need my trach re opened and tested aain to make a decesion on hearing aides....hope you all have a great weekend...I have friends coming over to help me bake ...maybe that will lift my blues.....:crying::confused1:

[JanW]

LisaMarie -- I am sorry that you are feeling so sad.

I do not think that any of our doctors should be giving us stats about what will happen without proper treatment -- shouldn't they be trying to give the proper treatment to ensure this outcome won't happen?? They can't control you being compliant with your medication regimen but they can control figuring out what to do about your case, and, if they can't (and many, many can't), they certainly can be humble enough to say - "I don't know what to do but I can consult with the Vasculitis Foundation/you need to get to a specialist, etc." What they should not be doing is using outdated stats or research to say, "well, dear, you will just have to adjust to being in pain for the rest of your life, not breathing out of your nose, being deaf." Not acceptable, not okay, until you have exhausted every avenue (which frequently these docs have not because they don't even know where the highways are, far less the avenues).

It just makes me really angry when I hear (on here and in real life) about having to accept that your new normal will ALWAYS be vastly compromised vs. what a normal person experiences. For some people this is true. But I do think for many, many others this is not. It should not be the default way of thinking. I think that default way of thinking leads docs to undertreat, overmedicate (with painkillers, nasal sprays, sometimes SURGERY) that treats the symptoms rather than root cause, ignore our nigling symptoms (wegs patients are sick people anyway, right, so why should they expect to not have to take a two-hour nap everyday), and finally when it gets bad enough, boost you up on pred for a while to level everything out.

My docs have seen the good, the bad, and the ugly, patients' weddings and patients' funerals, patients go on to have children, patients who they see once a year because they've been in remission that long. For those people, their new normal is their old normal.

I'm am very thankful that I live where I live (for lots of reasons) and I am seen by the docs I do see, but it makes me very angry that others whom I will continue to believe could be just as well as I am today treated by docs who don't even know what they don't know, and actually think deep down (whether they tell you or not) that your new normal will pretty much have to suck because you have -- GASP! -- Wegener's.

[Jack]

Don't expect yourself to always be looking on the bright side, bad days happen. Just look at my first post on this thread, it caught me at a bad moment when the idea of being grateful for having Wegener's just made me mad. I was muttering some pretty intolerant stuff while I bashed at the keyboard! :wink1:

[LisaMarie]

I do not see the physican that gave me 1-5 yrs...I see the new doc that has some experience but is suppose to consult with Dr Abdou in his off as Dr Abdou is not taking any new patients...Atleast this DOc is honest enough to say I don not know but will try to find out...and he listens to me.....but once a Doctor tells you something it tends to stick in your brain...I try not to dwell on it but when it is 8 days before christmas and the tree just got put up and i have not baked a darn thing the reality hits that I am not the same woman any more...I hate that but as I say it is what it is and at times it is hard to see my glass half full...but I try:unsure:

[JanW]

Lisa Marie - please don't take anything I say to be directed to you...I can definitely understand any WG patient feeling down, or feeling as though things will never be the way that they were before. But the researchers that I met at the conference were very, very hopeful. Why? Because things are so much better than they were even 15 years ago, because we know more, because we are starting to understand the toxicity of medication and how dangerous prednisone is in the long run, because WG patients are living long lives and many are getting diagnosed much more quickly.

Seriously, I've never seen a bunch of professionals so happy to be spending their Saturday talking to a bunch of patients.

[LisaMarie]

No offense taken...I hope they stay enuthused.....I failed on rituxan and imuran then almost died due to a funky lung infection in sept so i am on the sdie of caution now....mtx did not work and i had 1 dose of ctx before starting the rtx...i have been on 60-20 mg of pred since june...mainly 60 mg....had to come home on o2 hate it...slowly weaning off ...so for me the roller coaster sucks and trust me I do every thing they say and take every pill they give me whether I like it or not...i am just wired weird when ti comes to meds and tend to be very sensitive to some ...so I deal and pray cellcept works...and i know it may take a bit for me to get use to it.....i just hope my trach has not closed enough for surgery again...it was 60% august ...so wish me luck next week...my body tells me it has closed more but maybe i am just being over cautious...lets hope

[Minneapolismark]

I suspect the statistics on mortality have to do with the beginning of a major flare up. I believe I have had Wegner's since childhood. I was always diagnosed with colitis or whatever, and I think it was actual AI.

So I would guess I've had Wegener's at least 40 years! But when I had my first massive flare up I don't think I would have lived much longer and it was just a few months until I was diagnosed.

[Minneapolismark]

And I do know that treatment for this disease has turned completely around in the last 20 years or so. Apparently prednisone was revolutionary in eliminating the short-term threat of the disease.

[JanW]

Even longer ago than that...treatment really took off in the mid-70s with the pred/immunosuppression combo. My doc believes that in the future you will see more docs willing to treat initially with immunosuppression alone, if they better understand the tempo of the individual patients disease (e.g. some people get sick very slowly, some very quickly, hard to know which is which). This is the kind of treatment that I had, which is not standard of care.

[Minneapolismark]

What the stats tell me is that my choices and actions matter! I am not a victim. I can tremendously affect the course of this disease, and for that I need your fellowship.

[Minneapolismark]

Another thing the stats tell me is that, if you have sought help and gotten treatment, you have already overcome MOST of the mortality risk of Wegener's.

[pberggren1]

Mark, you already have our fellowship. We are one big family.

[elephant]

Yes, I agree with Phil, we will always be family and have a connection! That is what I love about this forum. So many people on here dedicating their time to tell their story and help us WG out! Everyone here makes a difference and telling your story make us understand about this disease even more!

[Minneapolismark]

By the way, I talked the Bactrim and Mtx over with my rheumy. We have text messaging between patient and doctor, which is pretty cool. He is a U of Minnesota prof and very sharp actually. He explained that he is well aware of the interaction but that the benefits far outweigh the risks.

Although it is good practice to get a second opinion at Mayo, this guy is good. He also uses leading researchers and experts to consult in my case.

[Sangye]

Mark, it's good that your doc is doing a little extra work for you. But no matter how much he does, it doesn't even begin to compare to a doc who treats hundreds of Weggies, has the other Wegs specialists on speed dial and participates in Wegs research.

Many people refer to seeing or consulting with the VF docs as a "second opinion." But in my opinion (LOL) they are the only opinion to listen to.

[Minneapolismark]

Yeah but I am feeling like I am hanging in the wind right now. Plus I don't want to inadvertently slam anybody.

[Sangye]

Lisa Marie, it may help you to hear what Dr Seo told me at my first appt with him. I had been treated by "Wegs is a death sentence" docs for 2.5 yrs before seeing him so I was quite depressed. I wasn't in any support groups and was truly alone as a Weggie. I also had had non-stop complications and was in terrible shape. He asked me about my physical condition pre-Wegs. I expressed what it was like going from someone who could hike for miles in the mountains every day to someone who could barely function. He said, "You won't get your old body fully back the way it was. Damage has been done. But you will be better than this. I can't tell you how much better, and I can't tell you how long it will take, but it'll probably take longer than you expect."

Even though I'm still in awful shape and have had even more complications and hospitalizations, he still--at every visit-- tells me I'll be better than this. I trust him.

[Sangye]

Yeah but I am feeling like I am hanging in the wind right now. Plus I don't want to inadvertently slam anybody.
What do you mean? I don't understand either statement.

[Jack]

Yeah but I am feeling like I am hanging in the wind right now. Plus I don't want to inadvertently slam anybody.
I too don't fully understand what you mean, but if it means that you are doing OK and don't want to lose your relationship with your doc, you may need a priority check.

You need to be making progress towards a new state of normal that is sustainable and acceptable to you and your relationship with a particular doctor, although important at one level, does not even figure when your health is suffering. This is not a popularity contest and you have to get used to rubbing doctors up the wrong way if you disagree with them. The more you read this forum, the more likely you are to disagree with the bad ones! ;)

[Sangye]

Several of our members have tried to avoid hurting their doctors' feelings at the cost of prolonging their suffering, and in some cases causing permanent damage. The conversation doesn't need to be disrespectful or confrontational-- just direct. Competent and ethical docs will have no problem whatsoever sending you to a Wegs specialist (or agreeing to consult with one if you can't travel). This is done all the time for other diseases. If a doctor tries to make you feel guilty, embarrassed or in any way tries to keep you from getting experts involved, that's a big red flag that s/he isn't a doctor to remain with. If they delay consulting with a VF doc or make excuses, that's your clue to get out of there fast.

I don't know if any of this applies to you Mark, but I'm posting it because it does apply to many Weggies.

[JanW]

I absolutely agree with Sangye. At my first appointment with Dr. Lebovics (who is basically THE ENT for saddle nose or subglottic stenosis repair), when he said that I would need to have surgery, and quickly, because my condition was incompatible with life, he offered to give me the names of three other ENT surgeons who at least had some familiarity with the disease for a second opinion. My rheumy (who is at a minor, not major vasculitis center) said, again, first visit, "I have absolutely no problem with picking up the phone and consulting with someone who understands this better than I do, at any time (helps that he has a lead WG investigator down the hall in his department). My case has been nothing but straightforward at this point, but I do see people who get caught up in a cycle where they don't want to offend the doc who "saved my life" (because we all had our lives saved in some respect when we started on the right road to treatment). I met a woman at the Symposium who had been on ctx for five years because it "saved my life" and people who had fillers put into their saddle noses because "I trust my doc" Of course I couldn't say anything to those people because I wouldn't be confrontational like that, but I wish that they had a forum of people like this to talk to.

[Sangye]

Oh man, ctx for 5 years..... Hopefully she learned enough at the Symposium to get away from her doctor. :sad:

[Minneapolismark]

I am still grateful for all life has to offer and the spiritual growth I've been given. It is far better to focus on the things you can do than it is to think about the things you can't.

[manalolana]

Lisa Marie! I am so sorry! I know and i think all of us know and feel your pain! Please let me know if there is anything i could do! You know you have a friend here in Oahu!

[manalolana]

Mark! I think your outlook is great! I was just told last Wednesday that I will be at least a few years before I could be in remission and even at that, I will most likely never get my old life back! I cried for three days straight. Having to take MTX injection and the side effects didn't help my mood either.

Having to ask my friends to help me pick up groceries, needing naps to sustain the day, nervous that I would lose my job because I'm sick, odd marks on my skin etc... Never have been in the position to need someone's help until I got sick. I was mis-diagnosed for a year and a half and finally got on "right" treatment since April of this year.

Anyway, I was convincing myself that I will get used to my "new" life and saw what you wrote! I love it! MAHALO!!!

[Jack]

Although it can take years to gain "remission" and for the very few it never really happens, I think a more realistic target would be within a year if the treatment is correct and your reaction to it is good. As for regaining your old life, this is often determined by the level of permanent damage sustained before diagnosis. Once the disease has been brought under control, the main problems arising will probably be due to drug side effects so if possible the aim of going drug free should at least be attempted.

[Sangye]

I agree with Jack. I can't believe a doctor would tell you it'll be 3 years before you get into remission--clear sign he's in over his head. I think you need a new doc, or at least to get a VF doc consulting with yours.

[JanW]

I agree with Sangye and Jack and I KNOW that the researchers at the Symposium looked to six months as a good standard for getting the 'average' WG patient (if there could ever be such a thing) into remission. If you are spending years and years on ctx, or another strong medication just to gain remission, it means that the protocol is most likely not right for you (or I suppose you could have sustained very serious damage prior to diagnosis).

I also don't think that a doc should be telling you you can't get your old life back. Not everyone does of course, but many do, especially with a good doc, relatively prompt diagnosis and effective treatment.


I feel as though some people here are being treated by docs who are looking at dated descriptions of our disease on the internet...and they should be more informed that the average WG patient, not less!

[Minneapolismark]

I am having a tough time understanding my case, though. After various scanning modalities and a bunch of tests, I have NO permanent damage at all. But my symptoms included things like paralysis, extreme weakness, not being able to close my jaw due to swollen glands, seeing double, extreme shortness of breath, yada yada. So I have been at this about four or five months and my symptoms are largely under control if I stay on 25mg of pred.

Unlike just about everyone else, I actually gained a bunch of weight when I got sick.

I am hoping I can achieve remission but don't understand why my symptoms are so hard to beat.

[Sangye]

Staying on 25 mg pred is not an option. You wouldn't have any bones left after awhile, and lots more damage. If your Wegs is only controlled (and I don't think it is at all) by staying on 25mg pred, then the main immunosuppressant isn't working. It's either the wrong drug or the wrong dose. It isn't up to you to figure out why your symptoms aren't responding. That's a job for a Wegs specialist.

I also gained weight in the year leading up to my diagnosis. I went from being highly active to being crippled with pain. I continued to work as a chiropractor out of sheer will but by the last few months could barely even stand.

[Minneapolismark]

Thanks for the dose of reality. I will push harder to get into the Mayo.

My rheumy wants to send me to another rheumy, of course. I am thinking maybe pulmonologist.

[JanW]

There's no real reason not to see another rheumy. Given your multiple symptoms, the guy who is closest to a generalist is going to be able to view your symptoms in totality a lot better and if he's good (and the guys at Mayo will be great), offer a treatment plan.

I met a woman who has been going to a pulmy for over a year (top guy in NYC), is still flaring and has never gotten her symptoms under control. Per the wonderful ENT we both share, she is going to Cleveland Clinic, finally, for some answers.

It can hard for us to accept that even top specialists in their own fields can be totally flummoxed when it comes to WG. I suspect she's being undertreated (never been on ctx or rtx) but he really focuses on her lungs and what he believes she shouldn't do while immunosuppressed (she's on very strict precautions, including carrying her own utensils and plates to restaurants) vs all the other stuff like fatigue, joint pain...the vague 'bad days,' if they don't affect her breathing, he's not as good at figuring out.

[elephant]

Need to go to the Specialist asap and see a pulmonologist who understands WG. Have your Rheumy contact a Wegs specialist either at Mayo or Cleveland Clinic very soon. I agree with Sangye's statement regarding the Prednsione and the WG not being controlled. Sorry you are feeling crappy!

[Sangye]

I don't know if Dr Specks (pulmy) at Mayo takes on the overall care of Weggies. I think someone said he does. Because he's such a famous Wegs doc, I'd trust him to decide that. In most cases you should have a rheumy overseeing your care. They will send you to other specialists as needed, but rheumies are usually the only ones trained in looking at all of you.

[JanW]

I believe he does. The rheumys at the conference more than once made fun of him because it's rare to see anatomical specialists actually expand their research area to include the whole patient, vs. how the disease affects the specific body area that they specialize in.

I also wanted to add that outside of the US it's different, and other specialists treat wegs in addition to (and sometimes instead of) rheumys.

[Palmyra]

On the plus side I have a legal right to take narcotics.

On the negative side I need them.

What a perspective! I would be bragging to all my old hippie friends, but then again, not really.

[Minneapolismark]

I just wrote a letter to my rheumy requesting referral to the Mayo. It appears that, based on the recommendation of other Weggie's, that there are two candidates at the Mayo. Thanks for your encouragement and help.

May sound odd, what with the paralysis and bleeding and all, but I find it very hard to take this disease seriously. Even I sometimes think I'm a hypochondriac! It is all just so bizarre and slippery. Wrist one day, foot the next--today the fingertip of the index finger of my left hand was killing me. Now it is gone.

You must admit it sounds pretty bizarre even if it is happening to you. I just keep thinking I should be able to suck it up and get on with my life, but this never seems to work. One of the problems of having a type A personality is that we make very impatient patients! :-)

[Sangye]

It's called denial. We all do it to some extent. :biggrin1:

[pberggren1]

Hey Mark,

Sorry to hear that you are still feeling crapy. Before I found my Wegs specialist right here in my own town I was getting ready for my firts appointment with Dr. Specks at Mayo. I talked to his secretary and booking receptionist several times and was quite impressed with what they know about Wegs and the overall professionalism and courtesy. Even though I have not gone to Mayo I highly recommend Dr. Specks. I have watched some vidoes of him giving presentations and also lots of written material by him and it impresses me. He has a good sense of humour as well.

[jola57]

LOL welcome to the world of the bizarre

[Minneapolismark]

thanks so much for the information and encouragement. It turns out the Mayo is opening a new vasculitis clinic in January. I just called this morning and have an appointment to see Dr. Ulrich Specks the second week in January. Wooo hooooooo!!!!!!!!!

Boooya.

[chrisTIn@]

Congratulations with your appointment Mark!

Very interesting conversation on this thread.
Especially the parts about acceptance, fear, denial and s on.
We all have to deal with that, one way or another.

I very much agree with Jan W., who says that even if a ´top guy´is treating you, there still can be symtoms of WG.
I´m treated by a top guy, he says my WG is ´light´, and that I´m 'in remission'.
Still my remission is not totally symptom-free.

In my opinion, a good and allround vasculitis-specialist goes 'for the long term'.
He will balance the treatment-decisions he makes,
will look not only at syptoms but also at possible long-term-damage and base his treatment on that,
with an eye on the future.

[elephant]

Mark that is great news your going in Jan, what a wonderful Christmas gift!
Chrisitin, I am also not symptom free with WG. I too am in remission even though I myself still think I should be symptom free to be in remission. But also thankful that I am able to walk, talk, breathe and eat!

[Minneapolismark]

The problem I'm wrestling with is this: if I am in remission will I be able to work again, or is that one of those "wait and see" questions that has no common answer?

[dunkie2202]

Mark I think it is clearly a "wait and see". Many others have managed to return to work in one way or another. In my case I don't see that I will be fit to return to full time Motel cleaning at all. My GP who is also my old boss, agrees 100% and this is because of my kidney damage. Perhaps in the future I may be able to find something else ...another career, I think it all comes down to adjusting your "new life"

[Jack]

The problem I'm wrestling with is this: if I am in remission will I be able to work again, or is that one of those "wait and see" questions that has no common answer?
A lot does depend on your individual case. There are many on the Forum who can not work, but many of them are still trying to get the disease under control. There are others fit enough to climb mountains. I have seen both sides myself - it took 5 years to stop having flare ups although I did work through this time with a great deal of sick leave (I was also on dialysis for 18 months before having a transplant, but still able to work). I then had 15 years of near normal life with just the odd infection or drug side effect to deal with. For the past 5 years, my health has gone down hill again and I have had to take early retirement.

[Sangye]

Definitely wait and see. It's way too early to know how you'll be.

BTW--Whooya on getting an appt with Dr Specks! Sangye will now cross you off her "Must Nag Every Hour" list. :flapper:

[Minneapolismark]

But the nagging made me feel special! :hug1:

[Sangye]

I will still make you feel special by continuing to nag you about everything else. :ohmy:

[JanW]

Congrats, Mark! Great news on getting your appointment.