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View Full Version : Mike: 27 years without WG



mikecaven
03-05-2009, 10:57 AM
My WG disease came back a little less than one year ago. I had zero symptoms since late 1982. No knowledge as to why it returned. It took me a bit of time this time to believe that is what it was...as I thought I had pneumonia. After 10 months of treatment (Cytoxan and Prednisone) I appear to be back in remission again. Has anyone been in remission as long as me (27 years). Just wondering if I am unique?

I just joined this forum.

I'm Mike from Plano, Texas

Twice
03-07-2009, 05:52 AM
That must really suck!

That's the longest I've come accross, although I remember reading somewhere about someone being in remission for 40 years. I might have imagined it, though. I've never managed more than about 10 years.

Jack
03-07-2009, 06:33 AM
I think it was 100% terminal 40 years ago.

andrew
03-07-2009, 01:41 PM
Welcoem to the forum, Mike. Wow, that's a long, long time to be in remission. Congrats for getting back into remission so quickly as well. I have yet to achieve that hallowed status and maybe I won't. Dunno. Anyway, I honestly have never heard of someone being in remission that long. Where did the Wegs affect you (both times)?

Twice
03-07-2009, 08:54 PM
This lady (http://www.ingentaconnect.com/content/acaai/aaai/2003/00000091/00000001/art00017?crawler=true)seems to have done well. Jack, I think the early survivors were in the mid-late 60s.

Sangye
03-08-2009, 01:57 AM
That lady might have done well, but the link to her story didn't. Ahem. :rolleyes:

coffeelover
03-08-2009, 06:23 AM
welcome! 27 years without re occurance is awesome. I hope I can be so lucky! It is encouraging to hear though. I am happy for you that your remission came back again quickly. I hope you go another 27 years
coffeelover

andrew
03-08-2009, 09:00 AM
That lady might have done well, but the link to her story didn't. Ahem. :rolleyes:

Fixed the link :)

Twice
03-08-2009, 10:35 AM
Oops! Thanks Andrew.

Carol
03-08-2009, 11:41 AM
Wow! I hope I can be in remission for 27 years -that takes me to 82yrs although I reckon it would kill me if I'm that old and I am as sick as I was this time round. It's interesting to know at what point you are considered "in remission" . Did you stop taking all medications during this time??????

crackers
03-08-2009, 12:55 PM
yeh carol been wondering that myself.what does it actually feel like to be in remission.anybody ?
john.

andrew
03-08-2009, 02:53 PM
I think 'remission' is declared after your blood results (usually ANCA) appear normal over a period of time. That period of time is usually determined by your doc. You can either have a drug-free remission or a drug-assisted remission.

Doug
03-17-2009, 12:24 AM
Hello. I'm the new guy on the block, Doug. I think Andrew's response matches my doctor's point-of view, too. His response to me was based on consultations with the head of the Department of Rheumatology at the University of Colorado, Denver, where I had the treatment that brought me back to the world of the hopeful (and living!). How does remission feel? It sort of happens. It isn't one of those "yesterday I had full blown WG and today, at 6:41 a.m. I came into remission" sorts of things. Gradually, you feel a bit more peppy. You have your regular doctor's appointment, go through your usual blood and urine tests, he tells you all tests are within the "acceptable" range ("normal" is relative, it seems, and normal for me is high for many others). I have to wait for results on the cANCA test. The doctor's nurse calls, tells me the results are in the normal range (for me, again, which means relatively stable compared with earlier results).withheld. A slip of the mouse! I was diagnosed with WG about December 23, 2003. Being a guy, I walked, then crawled around with full blown WG from circa March or April of 2003, treating a potentially fatal disease with over the counter drugs. I should be dead! I see I'm out of space. My story will continue in later postings.

Sangye
03-17-2009, 12:49 AM
Hi Doug,
Nice to meet you. That's a great explanation of remission. I look forward to hearing the rest of your story. Meanwhile, I don't think you can run out of space on a post-- just type as you normally would, hitting "Enter" to make a paragraph. I think I'm the wordiest person on here and so far neither the program, nor Andrew nor the group has tossed me out! :D

Doug
03-17-2009, 03:07 AM
Dear Sangye,

I have checked out your blog, and it is most interesting! What I haven't mentioned up to this point is what part faith served in my healing, and how it has grown through the vicissitudes of WG.

Jack
03-17-2009, 04:18 AM
Hi Doug,
I would edit your e-mail address or the crawlers will find it and send you lots of spam!
Just put "at" instead of @

Sangye
03-17-2009, 04:51 AM
Hi Doug,
Since I wouldn't want anyone to feel uncomfortable with a more detailed talk about religion, I'll just say that using meditation, contemplation, and introspection have been very beneficial for me in dealing with/making sense of Wegs. Generating compassion is central to my practice, and has allowed me to use everything I've got--Wegs included-- to try to lessen others' suffering. You're welcome to leave comments on my blog and we can have some good discussions there. I respect the views of those of any faith. :)

Doug
03-17-2009, 05:30 AM
Incredible! It is good to hear from someone with that rate of success. I think mine is only about four years. The exact point at which my doctor decided I was in remission is unclear to me as my "normal" is a bit high for creatinine, for example, and cANCA, but I am stable at those "normal" points. As noted, it hasn't been that long ago that an untreated member of our small cohort had a 65% chance of succumbing within five months; 85% chance of succumbing within 10 months; and a 92% chance of succumbing within two years. The other 8% probably wished they were dead within two years, is my feeling, based on how sick I was at approximately 10 months when I was diagnosed. I remember reading in some WG website where experimentally, some WG patients were treated and survived treatment with pretty much the same protocol as is used today. I didn't notice where Mike lives, but he was most lucky to be diagnosed corrected at a point where he could be healed and was in an area where a doctor was at the cutting edge of what was then know about the disease and its treatment! Mike, please expand on how you got where you are today. My doctor has had four five WG patients over the years. He can't of course, discuss the others in anything but the vaguest terms, but the last time I asked him, "Dr., how are your other WG patients doing?" he answered, "They are doing well except one who died." Imust have sent a nonverbal message of panicked concern, because he then expanded the thought. "Of course the cause of death wasn't WG." Let me add that when I asked him a bit ago about an infection from hell (shingles/ Herpes zostar) I picked up and had a rare complication I had with it (so rare I'm only the 39th or 39th known person to suffer from this Herpes zostar complication!), "Shouldn't I think about each illness I have now as the indirect result of WG effects?" he said I should and that's how he views things. Start with the WG and work toward whatever is at the end. Enough for this posting!

coffeelover
03-17-2009, 06:38 AM
Doug,

Welcome to the forum! Your story is interesting and each person on this site adds a dimension that proves helpful to me and I am sure others with their stories.
In regards to your faith question.....I have always had a strong relationship with my faith and that has never wavered. Questioned at times, but never wavered. I am thankful that I was diagnosed at a time when there is a good chance of getting this in remission. (something I am still working on as I was only diagonosed in Jan of this year.)
I do not think the lack of treating yourself correctly is necessarily a "guy" thing as I did the same thing. I spend probably 8-9 months, not being able to breathe (tracheal stenosis) thinking it would "cure" itself, but eventually my stubbornness was averted by my lack of breath and I had to go in and now I have a trach and am on meds for WG.
My rheumy was angered with me for not seeing her sooner regarding my breathing issue, but has immediately jumped on the "lets take care of this now" wagon. Another thing I am most grateful for.
This forum has been another "thankful" event for me as the best advice I got was to accept my new "normal" and you reitterated that in your posting. Something I need to hear over and over again.
My aquaintances (family, friends, working relationships) have recently been asking me when I will get my trach out....of which I have no real answer...so that is my new challange. Each day with WG gets a bit easier to accept my circumstances and so therefore easier to accept these type of questions.
Thanks for listening and best of luck.
Coffeelover

Sangye
03-17-2009, 07:06 AM
One of the things it's taken me awhile to get is that we need to reframe Wegs for others. When we tell someone we have this serious, chronic disease that could be fatal, they really only know about things like cancer, or other things like heart attacks-- conditions that knock you flat, but if you survive, you just steadily improve over time. In those conditions, doctors can give pretty accurate prognoses about how long recovery will take and what it will look like.

So when we tell people what Wegs is, they only have that image rolling around in their minds. We do, too, when we're first diagnosed, and until we really start talking with other Weggies. (Hence the "new normal" dialogue) Now I explain that Wegs is all about uncertainty, and getting used to that. Might get worse, stay the same, or get better.

In a therapy session one day, I was listing all the things (Wegs and not) that were overwhelming to me. My therapist said, "You're like a Bugs Bunny cartoon where there are all these holes in the dam, and you've got both hands and feet covering leaks. Then more leaks spring up! Instead of using your energy to seal all the leaks, how about if we teach you how to float?"

I thought that was brilliant. Now I tell people Wegs is teaching me how to float instead of fight.

andrew
03-17-2009, 07:10 AM
Now I tell people Wegs is teaching me how to float instead of fight.

Awesomeness! I'm going to use that one myself!

mikecaven
03-19-2009, 04:04 AM
The first time was mainly sinus and lungs with a little bit of kidney involvement. This time the kidneys got hit harder...and my fingers got some vasculitis ulceration...very sore at the tips of two fingers. My creatinine level was 2.25 and is now near 1.6 after being on 200 mgs of Cytoxan and 60 mgs of Prednisone. I am now off of Pred and am on 150 mgs of Cytoxan until June. But the rheumatologis tells me that there is no sign of WG at this time...just a little loss of kidney function. Thus, the creatinine staying high.

mikecaven
03-19-2009, 04:07 AM
No I am still on Cytoxan until June but off predisone. The Dr. tells me I have no active symptoms...and I feel pretty normal.

pberggren1
03-26-2009, 08:30 PM
Well, I think a remission is different for everyone. For me it is the sinus problems, shortness of breath, high heart rate and bp, deviated septum, dry throat and larynx, poor energy level, blocked tear duct in left eye (should have surgery in May to correct), total hearing loss in left ear and 75% loss in right ear, etc. I always know that someone else has it worse than I.

Doug
03-27-2009, 12:31 AM
Hi Doug,
I would edit your e-mail address or the crawlers will find it and send you lots of spam!
Just put "at" instead of @
Thanks! It took me a bit of time to figure out where I put my e-mail address. I decided to remove it altogether. The sentence containing it, I mean. It is silly to spend money for spam-blocking programs, then invite more of it, eh?!:)

andrew
03-27-2009, 07:04 AM
Thanks! It took me a bit of time to figure out where I put my e-mail address. I decided to remove it altogether. The sentence containing it, I mean. It is silly to spend money for spam-blocking programs, then invite more of it, eh?!:)

Ooops...sorry Doug, I normally pick that stuff up and advise removal when it's first posted.

Doug
03-27-2009, 08:00 AM
Andrew

"Let there be peace on earth, and let it begin with me." :):):):)

Rylee
06-16-2009, 05:39 AM
As being a 'newbie' to WG - I am pleased to hear of such long remission periods. What I can't seem to find an answer on from my Drs - what is remission considered - and will I have to stay on meds or will I be drug free? I consider myself luck to have been diagnosed early and it looks like Predisone and chemo are doing the trick in getting me back on track. However, I am 35 with 3 kids, working full time, and a husband in the military and I really like to plan everything out - something I am finding hard to do right now.

Any advice or crystal balls out there....... is long remission periods common? should I expect to be fighting this 'drug fight' again or many times (I hate what Predisone is doing to me).

Sorry - little frustrated at times - but grateful for what I don't have right now....

Jack
06-16-2009, 06:15 AM
Hi Rylee,
I'm sorry, but there are no easy answers to your questions about the future. I expect you have read other posts on this forum and know by now that we are all very different in our symptoms and the level of treatment required. It is the nature of Wegener's to have several very common effects, but no set pattern.
There is no definition of remission other than the way you feel and then it could last forever, or maybe you never reach that stage at all. There are members here who were diagnosed in the early stages, have little damage and get by with hardly any medication. Others are far less lucky.
In my own case, I suffered a lot of permanent damage in the early days and it took several years to reach anything like remission. I then held down a good job for many years and brought up two daughters before the long term accumulation of problems caught up with me and I had to retire.
Keep posting and reading the forum together with any other information you can find and you'll very soon become an expert! ;)

JohnL
06-16-2009, 09:08 AM
I was in remission about 3 years ago and stopped cytox and pred - lasted over a year then had a flair - ANCA test of 67 - about 6 months ago went into remiss again bust stayed on cellcepy and 10 mg pred. Feeling pretty good for 81 years/ Get arnanase 'spelling??/ once a month.

jola57
06-16-2009, 04:49 PM
As Jack said, each of us is different. I too have been diagnosed before any heavy involvement of organs but my remission lasted about 3 weeks before WG reared its ugly head again and it was back to pred at 60mg and cyclo. I hope that you are taking it easy (I know that with kids there is no such thing as taking it easy) as much as possible. At least when you are alone just sit and do nothing. I am 52 but I don't think that age plays a role in when or how long we have a remission for. I can only hope that the meds do the trick for you and give you a loooong remission :))

Rylee
06-16-2009, 10:47 PM
This forum is fantastic! Thank you all. I will certainly keep reading and learning all I can. I am half-way done my 'scheduled treatments' and right now everything is heading in the right direction.

Wishing you all well.

Doug
06-17-2009, 01:17 AM
I think it was 100% terminal 40 years ago.

A few lasted past two years. I read statistics suggesting that a bit fewer than 10% did, but I never could find out what happened to them after two years, no small consideration when you have WG. Apparently some stayed in remission 27 years, etc. There are a few popping up on this site. Do you suppose part of it was the difficulty of diagnosing it in the first place? There surely were some in than less than 10% of WG patients who survived more than two years because they were misdiagnosed.

chrisTIn@
11-02-2010, 11:19 PM
I read your posting on another thread, so I looked you up!
27 Years in remission sounds very hope-giving!
I'm a newly diagnosed Weggie myself, and I 'm planning to read your entire thread.

I have a question about Bactroban ointment. My ENT gave it to me,
and I used it for several weeks, untill another doctor (a real Weg's specialist) prescribed me a high maintenance dose of Bactroban in pills (2x 960 mg daily). He said that I didn't need to use the ointment anymore, as the pill would allready take care of the tissue inside my nose.
In fact, my nose is quite good now, but sometimes I get an itchy feeling, and my nose is 'running' again.
Wonder if I should use the ointment again.
I have the excact same feeling as you have, that it's a certain 'bug', that makes me sick.
Probably it's the 'staphillococcus areum'. Scientific investigations seem to have prooved that this bacteria, witch most of the people on this planet carry in their nose, causes trouble in people with a disturbed immune-system.

Sangye
11-02-2010, 11:47 PM
There are 2 main hypotheses about the cause of Wegs-- infection or toxins. Many in our group can attribute the onset of their Wegs to one or the other. Some Weggies feel better on antibiotics like Bactrim (or using Bactroban ointment). In my case, I'm fairly certain it's toxins. I had high exposure for many years and antibiotics don't improve my symptoms.

elephant
11-03-2010, 01:55 AM
I think I fit the infection category.

Jack
11-03-2010, 04:07 AM
I put myself in the infection category based upon very little evidence. ;)

me2
11-04-2010, 02:43 AM
I am definatly in the toxin category. Years of working with highly toxic solvents with no protection. Long time ago.

julia
11-04-2010, 02:56 AM
Sometimes I feel it is toxins, other times infection and still at times I think toxins put it in my system and an infection or stress + infection brought it out.

elephant
11-04-2010, 02:57 AM
Like Sangye stated before we all should be eating a anti inflammatory diet. I am trying my best to eat wild sock eye alaskan salmon...I get it at Costco in a can. I eat it three times a week. I think our immune systems went crazy after being expose to bacteria or toxin, which caused severe inflammation reaction. That is my theory.

me2
11-04-2010, 03:46 AM
I'm with you Elephant. I didn't know Costco had wild salmon. I got hoodwinked and bought farm raised from them one time and it smelled so bad I couldn't eat it.
I just got lucky and put away 50 lbs of fresh Wild Coho vacum packed into the freezer from my neighbor who has a friend who fishes. I really believe that maintaining the low inflammatory diet has helped me. Go salmon...

elephant
11-04-2010, 08:24 AM
Me2, It's by the tuna cans ( Costco). Stay away from the farm raised salmon. The best for us is the sock eye wild Alaskan salmon.