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  1. #11
    Pete's Avatar
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    Quote Originally Posted by brew22 View Post

    Also does anyone know if wegs peeps should get the flu shot???
    Yes, my doc at Cleveland Clinic recommends I get the flu shot each year. You need to get the needle injection because it's a killed virus shot. The nasal spray is a live virus that carries a risk of giving us the disease because of our compromised immune systems. Got mine last week.
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    Pete
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    "Every day is a good day. Some are better than others." - unknown

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    On the flu shot, there are opinions pro and con. My doc tells me to get one, but then says it won't do much, so I figure why bother? I have never gotten one and haven't had the flu since I was in my 20's. Some on here have reported problems with the flu shot and say not to get it, while others say we should definitely get it, that they have done it without problems. Some feel it can stimulate a flare or even cause the flu. I don't know the answers and it is the time of year for it to be discussed again. No doubt, there is some searchable info and opinions in the archives.
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    Anne, dx'ed April 2011

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    cjhnsn29 is offline Registered Member
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    brew22,
    I actually for the first time since having WG. My doctor allowed me to have a flu shot. This type of flu shot they don't actually put the live strand in your body. I did not get the flu "doing the dance" haha

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    I think regular excercise helped me feel better. The gym I went to has 90 steps if you take the staircase from the parking garage, at the beginning just getting up there was such a shore and well it was pretty much my workout for the day. 6 months later and those stairs and I climbed those stairs quickly Unfortunately after my relapse I had to go and put my membership on hold (I've understood pred makes your ligaments softer, and lifting weights could hurt you) and realised I need to take the elevator as there is no way I could get up those stairs anymore. Oh well, once a cut I has heals I'll go swimming. There is an infection risk, so didn't want to do that until I got the pred a bit lower and won't go if I have any cuts.

    By the way, a rheumy told me that extreme physical activities could trigger Wegs. As an example he said someone could have a flare after running a marathon. So yeah, better not to outdo oneself.
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    Diagnosed 08/2013, Relapse 07/2014

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    My rheum was adamant that I get the flu shot last year and again this year. To him it's a no brainer that there is no harm in it and anything we can do to keep ourselves from getting sick is good. (He also had me get the pneumovax, and after I was below 20 mg of pred, the shingles vaccine. ) One year I promptly got the flu after getting the shot (this was long before WG) and then didn't do it for several years. Then I realized that the temporal connection between getting sick and having the injection was not meaningful. It takes a while for the shot to become effective, so it's just the luck of the draw.
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    Should we move the flu-shot discussion to another thread? I think its a very interesting topic, and I don't think others will find the discussion in this exercise-thread.
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    Diagnosed 08/2013, Relapse 07/2014

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    Off Topic but simple answer FOR ME IS YES. I know others here on the Forum will disagree as WG sets up different parameters for us all but I have just booked mine at my local surgery and it will be the 4th year in succession.

    Some people get an adverse reaction but I went on the advice of my doc, suggest you run it by him/her ASAP.
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    Quote Originally Posted by cjhnsn29 View Post
    I hear everyone saying exercise and working out will help, I don't know about anyone else but I don't have the energy to do so. It might because I don't breath well. I am just drained. Does anyone else have this problem with there WG?
    For what it's worth: Start. Somehow. I can understand and empathize with the fatigue. When I first began exercising, I set small goals. Literally walked down to the street corner and back - barely a hundred yards on level ground. Slowly and gradually, I was able to increase the distance and then the pace until I was able to regularly walk 3 miles at about 17 minutes per mile. It took me six months to work up to this. I now do it as my "daily (almost) constitutional". This has helped me maintain a BP of about 120/80, a resting pulse of about 60, and lose 7 pounds over the past nine months.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  9. #19
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    drz
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    Quote Originally Posted by Pete View Post
    For what it's worth: Start. Somehow. I can understand and empathize with the fatigue. When I first began exercising, I set small goals. Literally walked down to the street corner and back - barely a hundred yards on level ground. Slowly and gradually, I was able to increase the distance and then the pace until I was able to regularly walk 3 miles at about 17 minutes per mile. It took me six months to work up to this. I now do it as my "daily (almost) constitutional". This has helped me maintain a BP of about 120/80, a resting pulse of about 60, and lose 7 pounds over the past nine months.
    WOW! That is real amazing and impressive to me. But then my goal for the first three months was to be able to get out bed and walk to toilet ten feet away by myself without help or supervision. I reached this at 3 1/2 months. Three years later I can walk a mile slowly on level ground, some times even without a rest break along the way.
    Last edited by drz; 09-23-2014 at 02:21 PM.
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    Knowledge is power! Wisdom is using it to make good decisions!

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    Regarding exercise, yes, do as much as you can without hurting yourself. If you're on pred be careful, as it makes you more likely to rupture tendons and ligaments, and high dose pred will make you feel as if you can do much more than you really can.

    Regarding the flu shot, personally I wouldn't touch it with a 10 ft pole. I know 4 people in this group alone who can directly trace the onset and/or severe flare of their Wegs to the H1N1 shot. Vasculitis is listed as an adverse reaction on that shot. Autoimmune disease is listed on the flu shot. Mercury is still in the flu shot, as are a number of other known carcinogens. I've been immune-compromised since 2006 and have never had the flu in that time, while many "healthy" people around me who annually line up for the shot have had flu and they get severe colds every year. I recommend that you do your homework as you would for any other medical treatment.

    Here's an article written by an MD from MIT and Cornell about the flu vaccine.
    A Shot Never Worth Taking: The Flu Vaccine ~ by Kelly Brogan, MD | International Medical Council on Vaccination
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