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Dryhill
05-02-2012, 08:49 AM
I copied the following article from the Vasculitis UK May email. It would seem to confirm what a number of you have mentioned before.

Jim

Stress triggers disease flares in patients with vasculitisStudy shows psychological health important to controlling Wegener's granulomatosisIn patients with a devastating form of vasculitis who are in remission, stress can be associated with a greater likelihood of the disease flaring, according to a new study by investigators at Hospital for Special Surgery (HSS).
This is the first study to suggest that mental health is a risk factor in patients with vasculitis, a group of autoimmune disorders characterized by the inflammatory destruction of blood vessels. The study, in a form of the disease known as Wegener's granulomatosis (WG), will be presented on Nov. 8 at the American College of Rheumatology's annual meeting.
"When this disease flares, people can be really sick. It often affects the lungs, kidneys, sinuses and nerves. It can cause fevers and rashes. People can die from this illness. It is a very robust, active, inflammatory disease when it is active," said Robert Spiera, M.D., director of the Vasculitis and Scleroderma Program at HSS, who led the study. "When patients are in remission, however, they can do very, very well."
He says that doctors caring for patients with this disease should be attentive to their psychological health. "This study points out that mental health should be part of your medical assessment," said Dr. Spiera. "You should pay attention to the patient's mental well being and be more aggressive about intervening if a patient is in a bad place. Make sure that patients take it seriously."
Prior to this report, a few small studies had suggested that psychological stress can trigger flares of lupus, another autoimmune disease, and doctors have observed that WG patients often say that stress in their lives, caused by perhaps a death of someone close or losing a job, made their disease flare. To investigate this anecdotal evidence in a more quantifiable way, researchers at HSS conducted a retrospective analysis of data from the Wegener's Granulomatosis Etanercept Trial (WGET). The primary objective of this randomized, placebo-controlled clinical trial was to evaluate the safety and efficacy of using etanercept (Enbrel; Immunex Corporation) to get patients with WG into remission and maintain that remission.
All patients in this multicenter trial had active disease at the beginning of the study and most patients went into remission. Checkups occurred every three months. "We assessed their disease activity at defined time intervals, in terms of how active their vasculitis was or whether they were in remission, and we also collected information at every visit regarding the patient's physical and mental health," Dr. Spiera said. Investigators measured disease activity using the Birmingham Vasculitis Activity Score for Wegener's Granulomatosis, a validated tool. At every visit, patients also filled out the Short Form 36 Health Survey, which includes a physical and mental component. Summary scores for each component are measured on a scale of 0 to 100, with 100 being the healthiest.
For their retrospective analysis of WGET, HSS investigators reviewed records of all patients who had a sustained remission of at least six months (143 patients). They then reviewed data from all checkups after the time of sustained remission to assess the relationship between flare status and the physical and mental health scores from the previous visit. They found that patients were 19 percent more likely to experience a disease flare if they had a five point lower mental health score (P<0.01) at the checkup immediately prior to the flare. The physical component score did not predict an activation of the disease.
"If you looked at patients who were in remission for six months or longer and assessed their mental health as captured by this mental health score, those with a lower mental health score at a given point in time would be more likely to be flaring at the next visit, within three months," Dr. Spiera said. "This is the first time that as an independent variable, stress seemed to predict a greater likelihood of flaring."
The study suggests that doctors need to be attentive to a patient's psychological state and be proactive about interventions to help them manage stress. "There are a lot of things that can be done proactively in stress management on the patient's side outside of seeing a psychiatrist," Dr. Spiera said. For example, exercise and yoga have been shown to be effective stress relievers.
The HSS researchers next hope to prospectively examine the association between psychological state and flares in upcoming trials of vasculitis and other autoimmune diseases. Some investigators have hypothesized that stress-related hormones lead to immune dysregulation, but research is needed to tease out the mechanisms.
"Going forward, we can even think of trials where you would take patients who have declined in their mental component score and randomize half of them to receive some sort of stress management program and half of them not to receive it, to see if it changes their outcomes," Dr. Spiera said.
Wegener's granulomatosis was recently renamed granulomatosis with polyangiitis. The rare disease, in which inflamed blood vessels interfere with blood circulation, mainly affects vessels in the nose, sinuses, ears, lungs and kidneys, although other areas may be involved. It is most common in middle-aged adults.


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Other authors of the study are Morgana Davids and Huong Do at HSS; Gunnar Tomasson, M.D., Boston University School of Medicine; John Davis Jr., M.D., MPH, Genentech; Gary Hoffman, M.D., Cleveland Clinic; W. Joseph McCune, M.D., University of Michigan; Ulrich Specks, M.D., Mayo Clinic; E. William St Clair, M.D., Duke University Medical Center; John Stone, M.D., MPH, Massachusetts General Hospital; and Peter Merkel, M.D., Ph.D., Boston University.
About Hospital for Special Surgery
Founded in 1863, Hospital for Special Surgery (HSS) is a world leader in orthopedics, rheumatology and rehabilitation. HSS is nationally ranked No. 1 in orthopedics, No. 2 in rheumatology, No. 19 in neurology and No. 16 in geriatrics by U.S. News & World Report (2011-12), has received Magnet Recognition for Excellence in Nursing Service from the American Nurses Credentialing Center, and has one of the lowest infection rates in the country. From 2007 to 2011, HSS has been a recipient of the HealthGrades Joint Replacement Excellence Award. A member of the NewYork-Presbyterian Healthcare System and an affiliate of Weill Cornell Medical College, HSS provides orthopedic and rheumatologic patient care at NewYork-Presbyterian Hospital at New York Weill Cornell Medical Center. All Hospital for Special Surgery medical staff are on the faculty of Weill Cornell Medical College. The hospital's research division is internationally recognized as a leader in the investigation of musculoskeletal and autoimmune diseases. Hospital for Special Surgery is located in New York City and online at www.hss.edu (http://www.hss.edu).

Red
05-02-2012, 10:03 AM
I think i am going to try yoga ,i have a lot of stress

Dryhill
05-02-2012, 11:15 AM
I have wondered about yoga or tai chi.

Jim

Al
05-02-2012, 11:32 AM
Another of those "Duh, ya think...?" moments.

Tai Chi is a good idea, I think (my muscles are a little stiff for most kinds of yoga), but I like Qigong even better--more heavy breathing!

Al

Dirty Don
05-02-2012, 04:31 PM
I am in 'medical' remission right now. I walk, stretch, meditate, golf (which is a very quiet & focused sport), and, of course, have good drugs at my disposal. My head, despite being a bit crazed already, is in a good place with this disease, and although the good docs & my wonderful wife saved my life, I owe a bit of my recovery and state of being to my own efforts to stay 'calmed & relaxed' thru all the ****...it has helped.

Al...heavy breathing? Really? LOL!!!

Al
05-02-2012, 05:37 PM
I am in 'medical' remission right now. I walk, stretch, meditate, golf (which is a very quiet & focused sport), and, of course, have good drugs at my disposal. My head, despite being a bit crazed already, is in a good place with this disease, and although the good docs & my wonderful wife saved my life, I owe a bit of my recovery and state of being to my own efforts to stay 'calmed & relaxed' thru all the ****...it has helped.

Al...heavy breathing? Really? LOL!!!Whassamatta, Don--don't you pump it up when you score below 90?

Al

Dryhill
05-03-2012, 11:26 AM
Another of those "Duh, ya think...?" moments.

Tai Chi is a good idea, I think (my muscles are a little stiff for most kinds of yoga), but I like Qigong even better--more heavy breathing!

Al


The only trouble Al, is I had to promise to be a good boy and stop all that heavy breathing down the phone :wink1:

Jim

Sangye
05-03-2012, 01:40 PM
(Didn't someone just post a study in the forum a few days ago that said stress wasn't a cause of flares? Am I hallucinating that?)

Before I got sick I did yoga every day for about 15 years. It's wonderful. I also dabbled in tai chi. I always recommended that my patients do either yoga, tai chi or chi gong on a regular basis in addition to whatever else they did for exercise. Nothing does what they do.

I miss yoga so much. There are a lot of reasons why I haven't been able to do it. I hope to get back to it someday.

me2
05-04-2012, 06:03 AM
Thanks for posting this article. Aside from the direct meaning it has I have another use for it.
My shrink is payed for by my insurance. I know from time to time he has to justify to them why my treatment needs to continue. I have forwarded the article to him. It may be useful. I notice the authors of the article included many of the big names for our condition , Specks, Hoffman, Merkel, etc. Top notch.

Dryhill
05-04-2012, 10:50 AM
Thanks for posting this article. Aside from the direct meaning it has I have another use for it.
My shrink is payed for by my insurance. I know from time to time he has to justify to them why my treatment needs to continue. I have forwarded the article to him. It may be useful. I notice the authors of the article included many of the big names for our condition , Specks, Hoffman, Merkel, etc. Top notch.

I hope your shrink is able to use this article to justify his time. The top names was the deciding factor to start this thread.

Jim

me2
05-04-2012, 12:07 PM
I hope your shrink is able to use this article to justify his time. The top names was the deciding factor to start this thread.

Jim


Well I think you were spot on Jim. I emailed it to him and already heard back. He says "Thank you very much. The information here is very important"
I mentioned to him that I knew that there were many of the world class names of Wegeners who co-authored this paper.
Good on ya as Michelle might say.

Al
05-04-2012, 03:11 PM
Yes, but it must be noted that even world-class experts often need a little help when it comes to coming up with a narrative whence to built testable hypotheses. Individually, anecdotes down't seem to have any effect. But many anecdotes, spread over the entire world, can mean a lot.

Al

Dryhill
05-05-2012, 12:31 PM
Yes, but it must be noted that even world-class experts often need a little help when it comes to coming up with a narrative whence to built testable hypotheses. Individually, anecdotes down't seem to have any effect. But many anecdotes, spread over the entire world, can mean a lot.

Al

Al, you coiuld argue that all vasculitis/rheumatology doctors should be made to at least read sites such as ours. That would give them a greater understanding of how the disease and side-effects of the meds has on a lot of people of all ages.

Jim

Al
05-05-2012, 04:05 PM
Al, you coiuld argue that all vasculitis/rheumatology doctors should be made to at least read sites such as ours. That would give them a greater understanding of how the disease and side-effects of the meds has on a lot of people of all ages.

JimAnd I would so argue, Jim. Won't do much good though, I suspect. Doctors are typically judged (by their peers) on how closely they adhere to established protocols, and (by the insurance companies--and, presumably, by their families, accountants, and so on) by how many patients per hour they see. To change this would require that protocols come to give a higher weight to patient history and introspection. How likely does that sound to you?

Al

drz
05-06-2012, 06:44 AM
There is some talk and movement toward an outcome based reward system by insurance companies. This could be our opening for better care since evidence suggests that doctors who "listen" to their patients and cultivate more trusting relationship tend to have better outcomes than the factory output bean counter models plus they get sued a lot less too.


And I would so argue, Jim. Won't do much good though, I suspect. Doctors are typically judged (by their peers) on how closely they adhere to established protocols, and (by the insurance companies--and, presumably, by their families, accountants, and so on) by how many patients per hour they see. To change this would require that protocols come to give a higher weight to patient history and introspection. How likely does that sound to you?

Al

Dryhill
05-06-2012, 11:28 AM
There is some talk and movement toward an outcome based reward system by insurance companies. This could be our opening for better care since evidence suggests that doctors who "listen" to their patients and cultivate more trusting relationship tend to have better outcomes than the factory output bean counter models plus they get sued a lot less too.

I must say that my rheumy is very keen to get me to tell him exactly how I have been feeling since our last meeting, particularly with regards to breathing and sleeping which were areas that I was having probles with before I was diagnosed.

Jim

Dryhill
05-06-2012, 11:29 AM
To change this would require that protocols come to give a higher weight to patient history and introspection. How likely does that sound to you?

Al

Al, we can always dream.

Jim

Sangye
05-06-2012, 01:47 PM
Red, can you see a therapist for help? Mine have been so good at helping me learn ways to manage all the emotions and stress associated with Wegs.

jola57
05-06-2012, 03:16 PM
Well, I can tell you that the article is true. I have not been on for some time since we have been renovating the house. The workers were extremely slow, left dirt everywhere and I had to clean the whole house every day. My hubby was climbing the walls as he is a perfectionist and that more than anything has sent me over the edge. For the past month or so I have started feeling run down and tired, I have pain in lower back and lower abdomen. At my visit to my doc he noticed a lump on my throat, did tsh test and it came as 0.01. After controlling my thyroid for over 26 years, it decided to flare, at the same time I started to get hemoglobin in urine, from trace to now moderate. I was to leave for my UK and Poland trip in one week, now it seems like I may have to cancel.:crying:

pberggren1
05-06-2012, 04:38 PM
Damn Jolanta.

This is not good news. Sounds like the house renos has been too stressful. I know how your husband feels. That is horrible how you had to clean up after the workers. We had some small renos and fixings done a couple of years ago. I saw their finished work before mom came home and said to them that they had better run for the hills or do a better job and clean up better or else suffer the wrath of my mom. I handed them the phone with my mom on the other end and told them to explain why we could not move in sooner. Those guys actually became good friends with us.....lol.

Red
05-06-2012, 05:40 PM
If you Want A consultant i will help you been helping others for 30 years ?

Sangye
05-07-2012, 02:53 AM
Well, I can tell you that the article is true. I have not been on for some time since we have been renovating the house. The workers were extremely slow, left dirt everywhere and I had to clean the whole house every day. My hubby was climbing the walls as he is a perfectionist and that more than anything has sent me over the edge. For the past month or so I have started feeling run down and tired, I have pain in lower back and lower abdomen. At my visit to my doc he noticed a lump on my throat, did tsh test and it came as 0.01. After controlling my thyroid for over 26 years, it decided to flare, at the same time I started to get hemoglobin in urine, from trace to now moderate. I was to leave for my UK and Poland trip in one week, now it seems like I may have to cancel.:crying:
Oh no! I'm glad your docs are on top of things, Jolanta. Hopefully you can nip this in the bud.

Dryhill
05-07-2012, 11:14 AM
Well, I can tell you that the article is true. I have not been on for some time since we have been renovating the house. The workers were extremely slow, left dirt everywhere and I had to clean the whole house every day. My hubby was climbing the walls as he is a perfectionist and that more than anything has sent me over the edge. For the past month or so I have started feeling run down and tired, I have pain in lower back and lower abdomen. At my visit to my doc he noticed a lump on my throat, did tsh test and it came as 0.01. After controlling my thyroid for over 26 years, it decided to flare, at the same time I started to get hemoglobin in urine, from trace to now moderate. I was to leave for my UK and Poland trip in one week, now it seems like I may have to cancel.:crying:

That is terrible Jolanta, I have been lucky with my builders they always do a good job of clearing up. Mind you one of them is my neighbour and good friend so I suppose that helps.

As to the trip you are not missing anything here in the UK weather-wise, since they announced the hosepipe ban it has rained virtually every day!

Jim

pberggren1
05-07-2012, 11:50 AM
hosepipes again?....lol.

MCC
05-07-2012, 01:53 PM
For those of us who cant exercise at the moment, this book has excellent reviews for beating stress: Control Stress : Stop Worrying and Feel Good Now !: Amazon.co.uk: Paul McKenna: Books (http://www.amazon.co.uk/Control-Stress-Stop-Worrying-Feel/dp/0593056299/ref=pd_sim_m_h__1/275-6855695-7628455)

Al
05-07-2012, 03:57 PM
I hope you get to make your trip, Jolanta. Sometimes you really have to pound on the docs, but remember that you are the customer, after all.

Al

Al
05-07-2012, 03:58 PM
For those of us who cant exercise at the moment, this book has excellent reviews for beating stress: Control Stress : Stop Worrying and Feel Good Now !: Amazon.co.uk: Paul McKenna: Books (http://www.amazon.co.uk/Control-Stress-Stop-Worrying-Feel/dp/0593056299/ref=pd_sim_m_h__1/275-6855695-7628455)Thanks, Kirk. This looks good even for those who can exercise....

Dryhill
05-08-2012, 11:45 AM
hosepipes again?....lol.

Yes, and three days I have had to drive through flooded roads to get to work. Two of the days it was not because the river was over its banks but because of run off from the fields as they are totally water-logged. Funny we never had so many hosepipe bans when the water companies where nationalised, clearly share-holders profits now come first.

Jim

Jim

freakyschizogirl
05-19-2012, 08:20 AM
I'm seriously trying to decrease the stress in my life. I get stressed quite easily at little things. I've recently stopped wearing my watch because a lot of my stress was around time keeping - i hate being late for anything. Since taking it off i am much more relaxed.

I have been thinking about Yoga or Tai-Chi as i've heard its very beneficial. Just need to find a local class!

Oh and i would recommend that Paul Mckenna book - we have several of his other books in my house - my sister had is confidence one and my mum had i can make you thin, tho with the best will in the world, being focused and calorie counting isnt enough to lose weight for a person who cant exercise.

Dryhill
05-19-2012, 11:09 AM
Sam, calorie counting and constant attention to a set of scales is also not helping the stress levels. Although I want to lose weight I am not sure getting too upset about the struggle is worth the risk of starting another flare. Try saying that to a doctor and see what he/she says.

Jim

pberggren1
05-19-2012, 02:12 PM
who said u can't exercise Sam?

Al
05-19-2012, 03:41 PM
I'm seriously trying to decrease the stress in my life. I get stressed quite easily at little things. I've recently stopped wearing my watch because a lot of my stress was around time keeping - i hate being late for anything. Since taking it off i am much more relaxed.

I have been thinking about Yoga or Tai-Chi as i've heard its very beneficial. Just need to find a local class!

Oh and i would recommend that Paul Mckenna book - we have several of his other books in my house - my sister had is confidence one and my mum had i can make you thin, tho with the best will in the world, being focused and calorie counting isnt enough to lose weight for a person who cant exercise.And why is it, Sam, that you can't exercise...?

Al

freakyschizogirl
05-19-2012, 06:56 PM
Sam, calorie counting and constant attention to a set of scales is also not helping the stress levels. Although I want to lose weight I am not sure getting too upset about the struggle is worth the risk of starting another flare. Try saying that to a doctor and see what he/she says.

Jim

I have done Jim, my GP is very dismissive about giving me any sort of help with weight loss, i tire of asking!

freakyschizogirl
05-19-2012, 06:56 PM
And why is it, Sam, that you can't exercise...?

Al

I was talking about my mum...

Dryhill
05-20-2012, 10:29 AM
I have done Jim, my GP is very dismissive about giving me any sort of help with weight loss, i tire of asking!

Sam, if you can do some exercise the NHS might pay most of any gym fees, I understand your GP can recommend you to some panel and they decide if you qualify or not. I believe the patient only has to pay £1.00 per session, the catch is one has to go regularly.

Now as I cannot even be certain to feel well enough to go to work, how can I sign up for this exercise course?

Jim

freakyschizogirl
05-21-2012, 02:55 AM
That very interesting Jim, i will go back next time and ask why she hasnt recommended me for any help from the NHS. Did you know £7 from every £100 of our taxes goes to the NHS? About time i got something back!

pberggren1
05-21-2012, 07:05 AM
That is only 7% Sam. Our tax dollars here that go to health care is around 40%.

freakyschizogirl
05-21-2012, 05:45 PM
But is that because you dont have a national health system like ours?

Dryhill
05-21-2012, 07:27 PM
Personally I am thankful for the NHS. With all the drugs I have been going through (and RTX is quite expensive) I am not sure how I would have coped where I had to pay for my treatment. Of course being over 60 means I also do not have to pay for any meds.

Sam, I feel for you, I have a very supportive GP. Both my previous GP and this one, asked me to see them so that they could learn something of WG from a patients point of view and to see if there was anything else they could do for me. It has alos been agreed if they get anyone else with WG (unlikely, but whoi knows) they will give my contact details to the new patient.

Jim

freakyschizogirl
05-21-2012, 08:17 PM
Yeah, my GP is rubbish. Her speciality is gynaecology so i dont exactly fit into her interests.

She never puts herself out to do anything. Gave me a diet sheet once, thats about it!

Dryhill
05-21-2012, 08:24 PM
Yeah, my GP is rubbish. Her speciality is gynaecology so i dont exactly fit into her interests.

She never puts herself out to do anything. Gave me a diet sheet once, thats about it!

Sam, I think your GP would like me as I look as if I am about seven months pregnant. I wonder if she would recommend the Natinal Childbirth Trust (NCT) course to me?

Jim

pberggren1
05-22-2012, 07:22 AM
I have no idea Sam. I think our system is quite a bit like the NHS.