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Kimbangu
11-08-2011, 02:34 AM
Study shows psychological health important to controlling Wegener's granulomatosis

"Some investigators have hypothesized that stress-related hormones lead to immune dysregulation, but research is needed to tease out the mechanisms."


Stress triggers disease flares in patients with vasculitis (http://www.eurekalert.org/pub_releases/2011-11/hfss-std110411.php)

Chris G
11-08-2011, 04:08 AM
Interesting article. This is the first time I've seen Enbrel listed as an effective WG drug. Has anyone tried Enbrel with any success?

NicShaf
11-08-2011, 06:56 AM
Very interesting, thanks for sharing. I've heard this many times before, that stress can cause a flare, but its nice to know that they've actually done a study on it and how to control it.

Kimbangu
11-08-2011, 07:58 AM
I'm quite excited because I have always maintained that stress was a big factor in my developing this horrible sneaky affliction in the first place.

Enbrel seems to be the commercial name for Etanercept, I haven't heard of it before., but they managed to shift $3.3 billion of it in 2010 so it's use must be pretty widespread..... I wonder if it goes under a different name in Europe?

http://en.wikipedia.org/wiki/Etanercept

Al
11-08-2011, 11:46 AM
Interesting study, the findings of which seem, for most of us, totally expected. But it's nice to have good research confirm our personal anecdotes!

Etanercept is a Tumor Necrosis Factor alpha antagonist. This line of research has been considered before, with mixed results. TNFa is one of the main neutrophil "primers"--that is, it brings MPO or PR-3 molecules to the surface of the cell, providing a target for the ANCA. The downside is that the immune system uses TNFa as a prime defense against malignant tumors. Again, that famed double-edged sword....

Al

Dryhill
11-08-2011, 12:12 PM
Makes a lot of sense. I was under quite a lot of pressure workwise and was stressed because I had not been sleeping very well for about eighteen months. Next thing I know I am in hospital and diagnosed with WG.

Thanks for brining this article to our attention.

Rose
11-08-2011, 03:18 PM
I was under relentless severe stress for about a year when I first became ill. In my case, I am sure this was the trigger for WG but this had come up before in forums and others have commented stating that they were not under any stress at time of diagnosis.

Why am I up at 4.30am browsing the internet?? Oh yes, the joys of high dose pred!!!

Palmyra
11-08-2011, 03:39 PM
Interesting article. This is the first time I've seen Enbrel listed as an effective WG drug. Has anyone tried Enbrel with any success?

Hi Chris. When my daughter first went to the Mayo Clinic with a diagnosis of Weg, I remember Ulrich Specks, MD (one of our Weg guru's titled in this study of stress on Vasculitis,) suggesting that a multicenter trial of Enbrel had been discontinued abruptly due to deaths within the confines of the study. He did not suggest it as an option for treatment (really!).

This most current study regarding emotional stress acting as a trigger for disease flares is an important one as far as I am concerned. It is what all of you have been speaking of for years, and now has real data to prove that emotional stress is not good for Weggies. That is why Sangye is so smart for posting her humor site! Breathe deeply and avoid stressful situations whenever possible. When giddiness is not available, accept simple serenity and acceptance. Downward dog and warrior when possible!

Rini
11-08-2011, 04:42 PM
Tell me about it. i'm in college and I get a symptom of the week. Stress is a big play in how well i can get through a day. I feel like good friends literally keep me healthy enough to stay in school...don't let me get me ;)

Rini
11-08-2011, 04:46 PM
I am now nocturnal ! love the Pred...i hope u get rest sometime.:cantbrain:

kulharv
11-08-2011, 05:21 PM
Great articlle.

Who does not have stress in their lives? I look back and think that yes, stress, could have tiriggered my flareups.

I know that I will try to control my stress levels as best as possible, as difficult as it maybe.


who am I kidding, every day brings a new challenge!

I think the pred has kicked in and have have no control now;

better go bye
so confused

pberggren1
11-08-2011, 05:24 PM
You are funny Rini.

When I first got sick in college I was only able to finish the semester because of friends that helped me do assignments or finished papers for me, etc. Then I had to quit and go back home. I was way to sick to carry on any longer.

freakyschizogirl
11-08-2011, 08:06 PM
I think stress was definately a major trigger for me - and was occuring the same time as my nose bleeds started.

I find it hard avoiding stress to be honest with you. I have started to take on a no stress approach ever since a colleague gave me a stress ball!! And i have noticed i have a few more grey hairs than i would like as a 26 year old!

I could've done with this article 2 weeks ago after my manager rang me 30 mins after i was discharged from Adds after my second infusion to shout at me down the phone.

malin
11-08-2011, 10:41 PM
I don't know if stress was one of the triggers when I first got Wegs but stress definitely play a big part in my flare ups and my how quickly I get back to "normal" after a flare up.

Like just now, I had a flare that started about a year and a half ago and I'm just now starting to get out of it properly (no pred anymore YEY!) and I think a lot of my recovery is due to the fact my partner finally got a permanent job and our income is now under control. My partner had previously been unemployed for almost 3 years and the stress of having no money except for what I get paid working part time was really getting to me. And to add even further work was incredibly stressful as well and
I was just feeling ten times worse than usual because of the added stress.

In the end I had a massive talk with my bosses and we agreed they should hire someone on a temp basis to help me out when things got busy, even thought this meant less hours/less money for me, my health always need to come first. Together with the new work situation and my partner getting a new job it was like a giant weight was lifted from me and I started to come out of my flare almost straight away!

It's amazing the affects that stress can have on us and I think it is important we all realise that stress really can kill you and if you have trouble at work/personal life or what ever, it should be a main priority to deal with the stress as soon as possible and to make sure people around you know how much stress affects you.

gwenllian111
11-09-2011, 12:12 AM
My flare ups became severe after giving birth....and that was one big stress, lol. X

Al
11-09-2011, 06:54 AM
My flare ups became severe after giving birth....and that was one big stress, lol. X

When I read the first post in this thread, my first thought was, "well, duh!!" Science noticing that stress is a component of disease progression is about as banal and unnecessary as science offering research showing that men like to look at women. In both cases the inverse would be the surprising news; why should be otherwise? Consider that we are built to deal with stresses and strains up to a point. Indeed, we need them. But the systems of dealing with the stresses can be overwhelmed. In modern life, we are dealing with mqny kinds of stresses that our ancestors, for whom bodies were optimized, never had to face. And the ways of keeping those bodies in prime condition are now ancient history. It's no wonder, I think, that autoimmune diseases are on the rise: immune systems, for all their complexity and relative robustness, are much more on the edge now, and can get overwhelmed more easily.

As I noted earlier, we all have our anecdotes. No, a single testimonial does not constitute a breakthrough theory, but a collection of them may point research in the right direction!

Al

jola57
11-09-2011, 08:48 PM
I have been living a very stressfull life all my life, so its hard to say if it had or has a big impact on my wegs, but I do know that I feel much worse now when my stress level gets to a point that I feel my muscles get so tense that I have to make an effort to relax them. In the past 5 years I have learned not to stress as much as before and keep my priorities, not to worry about things that are out of my control. And I have to say that I have been feeling better and better all the time. What damage has been done is not going to get better but at least wegs will not make me get worse (or so I hope) there is no happy pill that will magically make one feel great all the time but with having my closest relatives be negative, nagging and worse, I learned to be happy with whatever I have, wherever I am, and whatever I am doing. I take pride in my two wonderful sons and their achievements. And I can tell you IT'S WORKING. It took me a while and I have my falling off the wagon days but my life is greatly stress free (or as much as it can be) and I feel great.

Sangye
11-10-2011, 04:50 AM
No one can escape stress. The goal is to learn how to respond to stress so it doesn't harm you. Sometimes though, the stress is so acute and severe it's very hard to manage. Things like a death of a loved one, an accident, etc....

Jolanta, you have found a great way to manage your stress!

mama2005
11-10-2011, 05:30 AM
At the time of my diagnosis I was working 40 plus hours as a retail manager, going to college part time, and was dealing with the loss of my grandparents, the diagnosis of my son having pervasive developmental disorder (autism spectrum), and raising two children, soooo I would sau stress could have been a big pert to trigger the disease for me. I do sure try harder to be less stressed but as I said two kids, retail manager, finishing up college and this disease really can get to a person. I just think that some day I will look back and be able to say I survived that crazy life style.

jola57
11-10-2011, 05:52 PM
Mama2005, big points to you for not caving in and getting ahead in life in spite of wegs. I will soon be 55 and run property management/real estate business, manage my husbands medical office, help my 78 year old Mum, getting one son thru PhD (hurray he got honors in Masters so he is a Mr. Master he he) the other thru 5th year Med school. I won't mention keeping house, cleaning, cooking etc. So, hey, you will survive your crazy life style and probably even continue with that style for many many years to come. :thumbsup: Unfortunatley for many, wegs just destroys the body so much that every moment is taken up by staying alive. For uss its the day stress for them is the life and pain stress.

Geoff
11-16-2011, 01:32 AM
Very interesting thread which is so relevant to me right now. I am fortunate to still be 'in work' (still paying for the wedding!) and able to get away for a totally relaxing holiday where I went walking and swimming in the sea nearly every day.

On my return to work I was met with over 600 Emails, a mountain of new post and a court action to deal with. Kapow and I experienced the worst flare I have had since DX. Fortunate that I was admitted into hospital very quickly for another infussion of Alemtuzumub which left me flat out and bed ridden for 4 days but I am glad to say, a whole lot better now. I need to admit to myself that I am not indestructable and that I need to put my considerations first.

I guess I will have to speak with my employer and possibly face the fact that my career is coming to an end, but I believe that as one door shuts another will open, sometimes with surprising consequences!
~

Dirty Don
11-16-2011, 04:06 AM
I have anxiety, doc verified!! So it is under control with Lexapro. I would lean toward investigating that angle...meds for stress if they are compatible...mine are. Don't give up a career unless you don't want it anymore...you can do this, honest! Be careful, be persistent! Best of luck!

Widthofacircle
11-16-2011, 08:31 AM
I have never had any doubt that stress is what triggered Wegs with me.
I am glad to see that there is help to be got for this. I hacve a check up with the Rheumy on Thursday and will be raising this with him as work is extremely stressful at the moment and not looking like getting easier any time soon
Brendan

chrisTIn@
11-22-2011, 09:49 AM
Very interesting threat indeed.
I think stress is what int he first place caused Wegs, in my case, and also the 'flare', that I'm going throug now, is probably caused by stress, but also by cold-virusses.

elephant
11-22-2011, 01:25 PM
What about the little ones who get Wegeners, wonder if they were understress?

Al
11-22-2011, 04:19 PM
What about the little ones who get Wegeners, wonder if they were understress?

The problem is with the word "cause". Stress can be an important contributor without being the "cause". As for little ones suffering, this is why I have a problem with the "there must be a reason" viewpoint. There is, for example, no lesson to be learned, moral or otherwise, from a child who is born with spina bifida or hydrocephalus--or GPA. Is there a lesson for older folks? I'm not so sure.

Al

jola57
11-23-2011, 04:44 PM
Well said Al.