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Thread: Let's talk about "limited" Wegeners...

  1. #21
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    Default Re: Let's talk about "limited" Wegeners...

    I'm totally with you Sam.

    Calling a systemic disease 'limited' only adds a descriptor of how it has behaved thus far. And the thing about systemic disease is that it goes through the entire person's system, and can set up camp anywhere it finds a weak spot. So just because it 'only' affected sinuses, hearing and nose, doesn't mean that in its next iteration it will not go for your kidneys, lungs, skin, liver, etc.

    If the 'limited' descriptor is only used in reference to past disease activity, without clouding judgement, then great, but we're all human, and come with bias, so this term will absolutely cloud the judgement of doctors who don't feel very comfortable in Wegener's waters. Maybe 'restrained' is a good descriptor as it implies that it's being held at bay, but as anyone knows, restrains can be broken. I don't know, I'm shooting from the hip, lol. But I totally agree with you in that it creates bias, and that bias can lead to diminished medical response, when a medical response is necessary.

    We live in a world where it's easy to put people in pre-defined boxes, but this is proving to be a horrible exercise. We all know, especially on this website, that no disease affects two people the same way, and that no medicine affects two people the same way. A medical paradigm where people are treated as the individuals they are, is the one that we should all strive for.

    Massive hugs Sam. What you're doing is a very good thing. Keep going hard my friend.

    Peace,
    marta

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  3. #22
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    Default Re: Let's talk about "limited" Wegeners...

    I was told by a pulmonologist that I had limited Wegeners when I was first diagnosed. At the time I had both kidney and lung involvement. I asked him what he meant and it seems like he said something about the spot on my chest x-ray being below a certain measurement, but I don't remember that well. Looking back, I think maybe he was just trying to make me feel a little better, and it did, actually. I don't see him anymore and I have never heard that term from anyone else. In particular, I've never heard it from a rheumatologist. I don't think it's a formal classification of the disease. That's just what I think, I don't really know.

    But I get what you're saying about that and other things health care people say that seem to discount our day to day symptoms. It seems to me they look at me and my lab results and seem to think I'm doing great and there's really nothing to see here. That's not at all to say that I think they are unsympathetic or uncaring. I think they really would like to help me feel better. And I realize I'm very lucky to have done so well and have good lab results and be able to do most things people my age can do.

    So I'll give my thoughts on where this disconnect might come from. First, I think we generally look well. I've seen the pictures some of you have on your profile, and you all look great. So combine a healthy glow with stable lab results, and the health care provider is reassured. And I think we should be too because it does say that our disease is controlled in terms of risk to life and organ damage. Second, we are really the first generation to have the opportunity to live and thrive with this disease. These new treatments and drugs have changed our prognosis dramatically, like insulin did for diabetes (which was a rapidly fatal disease before that) in the latter half of the 20th century. So the medical community is just learning what long term management of WG looks like. This is actually true of many rare diseases that have just become treatable in recent years.

    When I was in the hospital after I was first diagnosed, some of the nurses told me more or less that this disease is really easy to have. One said, "That's the one that, except for taking the medicines, you don't know you have anything." Oddly, I'm very grateful to them for that because I was terrified and immensely grateful for any good news even if it turned out to be not exactly correct. (Nurses, all of them, should get a Nobel prize for kindness.) But nobody told me to expect never ending coughing fits that keep me awake at night or make me hang up without explanation in the middle of a phone conversation. They don't understand that or the awful night fevers or painful mouth ulcers that prevent me from eating. I could go on. In fact, nobody understands those things. But you all know immediately what I'm talking about. And that is a huge help. That's what this forum has done for me, and I thank you all.

    Ruby

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  5. #23
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    Default Re: Let's talk about "limited" Wegeners...

    Having any chronic disease that is considered easy to mange is probably an oxymoron. Chronic generally means there is no cure so even if it is in remission it can always flare up again. My two chronic autoimmune disorders are GPA and type 1 diabetes. Neither seem easy to me. GPA almost killed me 12 years ago and caused a lot of damage to my body that required a major down size in my life activity. My last GPA flare also resulted in more damage and more down sizing of life functions. I used to be able to hike miles at a good pace, then it was slowly a mile, and now I struggle to walk very slowly 100 feet.

    Diabetes requires more work every few hours and the damage from it is progressive although it is generally slower. Both cause some of the same damages to my body like kidney damage, neuropathy, weak immune system, and serious fatigue. A serious hypoglycemic episode or low blood sugar can be life threatening and require an ER visit or hospital stay.

    The GPA causes more lung damage and aches and pains in joints and muscles as well as nose bleeds and problems with post nasal drip from the sinus damage which creates frequent problems with coughing. These vary according to how active the GPA is or how good is the remission. But this helps me monitor and adjust my prednisone dosage. GPA can also flare to become life threatening very quickly.

    Diabetes and GPA both create a risk of blindness and loss of kidney function and other body organs. Diabetes increases the risk of heart attacks and and strokes and the GPA treatment increases the risks for several types of cancer. Both can cause many other symptoms which seem to wax and wane like sores in mouth, skin, inflamed eyes, and many other issues often related to suppressed immune system and high risk of infections. These complications usually require frequent visits to various medical care people and that is how I spend much or often most of my time but it beats being back in the hospital or a nursing home again although both are very likely to happen again in my future.

    The good news is that science and medical technology have improved greatly this century since 50 years ago either almost certainly caused an early death. Today many of us with either or even both diseases might live fairly independently to age 80 or beyond. At least that is my goal since i have remained out of the nursing homes for almost 12 years in a fairly independent living situation for senior people. Most of the residents in my apartment building are upper 80s or more in age and have various health issues. Our building is attached to a assisted living building that attaches to a nursing home. Many of the residents hire home care services or have regular visit from a caring family member who assist them with daily living. The senior living complex used to provide various social activities like the usual bingo, joy rides, transportation to local medical appointments, movies, and some arts and crafts. These were drastically curtailed during the pandemic but none of our residents died from the virus outbreak but some have died from other health problems that are common at age 90 plus.

    Some times it gets more difficult to focus on what we can still do to enjoy the time we have left but it helps to remember some of the past days when things were much worse. And to remember many of our past colleagues who are no longer with us and to give thanks that we are still here and able to do what we still can!
    Last edited by drz; 06-04-2022 at 09:00 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

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  7. #24
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    Default Re: Let's talk about "limited" Wegeners...

    It said I had to repost this reply to get it on the forum so sorry if it gets posted double.

    Having any chronic disease that is considered easy to mange is probably an oxymoron. Chronic generally means there is no cure so even if it is in remission it can always flare up again. My two chronic autoimmune disorders are GPA and type 1 diabetes. Neither seem easy to me. GPA almost killed me 12 years ago and caused a lot of damage to my body that required a major down size in my life activity. My last GPA flare also resulted in more damage and more down sizing of life functions. I used to be able to hike miles at a good pace, then it was slowly a mile, and now I struggle to walk very slowly 100 feet.

    Diabetes requires more work every few hours and the damage from it is progressive although it is generally slower. Both cause some of the same damages to my body like kidney damage and neuropathy weak immune system, and serious fatigue. A serious hypoglycemic episode or low blood sugar can be life threatening and require an ER visit or hospital stay.

    The GPA causes more lung damage and aches and pains in joints and muscles as well as nose bleeds and problems with post nasal drip from the sinus damage which creates frequent problems with coughing. These vary according to how active the GPA is or how good is the remission. But this helps me monitor and adjust my prednisone dosage. GPA can also flare to become life threatening very quickly.

    Diabetes and GPA both create a risk of blindness and loss of kidney function and other body organs. Diabetes increases the risk of heart attacks and strokes and the GPA treatment increases the risks for several types of cancer. Both can cause many other symptoms which seem to wax and wane like sores in mouth, skin, inflamed eyes, and many other issues often related to suppressed immune system and high risk of infections. These complications usually require frequent visits to various medical care people and that is how I spend much or often most of my time but it beats being back in the hospital or a nursing home again although both are very likely to happen again in my future.

    The good news is that science and medical technology have improved greatly this century since 50 years ago either almost certainly caused an early death. Today many of us with either or even both diseases might live fairly independently to age 80 or beyond. At least that is my goal since i have remained out of the nursing homes for almost 12 years in a fairly independent living situation for senior people. Most of the residents in my apartment building are age upper 80s or more and have various health issues. We are attached to a assisted living building that attaches to a nursing home. Many of the residents hire home care services or have regular visit from a caring family member who assist them with daily living. The senior living complex used to provide various social activities like the usual bingo, joy rides, transportation to local medical appointments, movies, and some arts and crafts. These were drastically curtailed during the pandemic but none of our residents died from the virus outbreak but some have died from other health problems that are common at age 90 plus.

    Some times it gets more difficult to focus on what we can still do to enjoy the time we have left but it helps to remember some of the past days when things were much worse. And to remember many of past colleagues who are no longer with us and to give thanks that we are still here and able to do what we still can!
    Last edited by drz; Today at 04:59 AM.
    Knowledge is power! Wisdom is using it to make good decisions!
    Edit Post Reply Reply With Quote
    Last edited by drz; 01-23-2023 at 10:05 PM.
    Knowledge is power! Wisdom is using it to make good decisions!

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  9. #25
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    Default Re: Let's talk about "limited" Wegeners...

    Quote Originally Posted by drz View Post
    Chronic generally means there is no cure so even if it is in remission it can always flare up again.
    You're so right, drz!
    No-one can can define better what it's like to deal with auto-immune diseases than you do.
    It's wonderfull to see you writing here on the forum again...
    Last edited by [email protected]; 06-04-2022 at 01:15 AM.
    Living with WG/GPA since june 2010...

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  11. #26
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    Default Re: Let's talk about "limited" Wegeners...

    Quote Originally Posted by JBee View Post
    Luckily I've only come across one doctor who was a bit dismissive. I had lung and hearing damage as well as upper respiratory problems. We all know that GPA can flare up and it may not be limited to the original areas of the body that were attacked the first time. Unless it serves some useful medical need, and I don't know enough about why it was used in the first place, there seems no point in any distinction. An alternative word will still raise the same issues for many.
    JBee, I agree 100%. Every time the disease messes with me, it attacks me in new ways that I've never seen before. Most of my doctors from 2009 used the term, "limited" with me. I was in my glory, thinking it's not as bad as it could be. That made me take the disease less serious just from that word. But when new symptoms came up, including my kidneys, they changed the overall term from limited to "general Wegener's". I still didn't understand. To leave things on a better note, I told the Rheumatologist that the multiple drugs are hard to pay for compared to when I was diagnosed. I have "Limited Money" to pay for it all. LOL She laughed because she knew I was using that word in a better understandable context. She did agree though. A lot of her patients suffered from not taking the disease as serious as it really is.

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  13. #27
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    Default Re: Let's talk about "limited" Wegeners...

    Quote Originally Posted by drz View Post
    Having any chronic disease that is considered easy to mange is probably an oxymoron. Chronic generally means there is no cure so even if it is in remission it can always flare up again. My two chronic autoimmune disorders are GPA and type 1 diabetes. Neither seem easy to me. GPA almost killed me 12 years ago and caused a lot of damage to my body that required a major down size in my life activity. My last GPA flare also resulted in more damage and more down sizing of life functions. I used to be able to hike miles at a good pace, then it was slowly a mile, and now I struggle to walk very slowly 100 feet.

    Diabetes requires more work every few hours and the damage from it is progressive although it is generally slower. Both cause some of the same damages to my body like kidney damage, neuropathy, weak immune system, and serious fatigue. A serious hypoglycemic episode or low blood sugar can be life threatening and require an ER visit or hospital stay.

    The GPA causes more lung damage and aches and pains in joints and muscles as well as nose bleeds and problems with post nasal drip from the sinus damage which creates frequent problems with coughing. These vary according to how active the GPA is or how good is the remission. But this helps me monitor and adjust my prednisone dosage. GPA can also flare to become life threatening very quickly.

    Diabetes and GPA both create a risk of blindness and loss of kidney function and other body organs. Diabetes increases the risk of heart attacks and and strokes and the GPA treatment increases the risks for several types of cancer. Both can cause many other symptoms which seem to wax and wane like sores in mouth, skin, inflamed eyes, and many other issues often related to suppressed immune system and high risk of infections. These complications usually require frequent visits to various medical care people and that is how I spend much or often most of my time but it beats being back in the hospital or a nursing home again although both are very likely to happen again in my future.

    The good news is that science and medical technology have improved greatly this century since 50 years ago either almost certainly caused an early death. Today many of us with either or even both diseases might live fairly independently to age 80 or beyond. At least that is my goal since i have remained out of the nursing homes for almost 12 years in a fairly independent living situation for senior people. Most of the residents in my apartment building are upper 80s or more in age and have various health issues. Our building is attached to a assisted living building that attaches to a nursing home. Many of the residents hire home care services or have regular visit from a caring family member who assist them with daily living. The senior living complex used to provide various social activities like the usual bingo, joy rides, transportation to local medical appointments, movies, and some arts and crafts. These were drastically curtailed during the pandemic but none of our residents died from the virus outbreak but some have died from other health problems that are common at age 90 plus.

    Some times it gets more difficult to focus on what we can still do to enjoy the time we have left but it helps to remember some of the past days when things were much worse. And to remember many of our past colleagues who are no longer with us and to give thanks that we are still here and able to do what we still can!
    I have been grateful for all the new drugs but had not thought about the implications of being the first generation of GPA patients with access to newer treatments! Very insightful.

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