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Thread: SORRY I HAVE BEEN GONE, BUT WAS RELAPSSING BADLY

  1. #1
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    Default SORRY I HAVE BEEN GONE, BUT WAS RELAPSSING BADLY

    8)
    I want to apologise to all of you for not being here as often as I would like to be.
    AS some of you know I was dealing severe pain in my neck and back due to bone chips, then I got a pneumonia shot that was supposed to KEEP ME FROM GETTING it....well I got it and bad my left lungis more than 1/3 filled with fluid.

    I am also dealing with some MEN's problems most of have to deal with once we are over 50....
    I'm to have THE TEST performed next week ,but in the mean time just fighting off this relapse and the stress of what they might find has me all twisted inside.
    Most of you know I do not like to whine or complain but rather have a posotive outlook but for even us OPTOMIST are sometimes overwhelmded with BAD NEWS !!!!

    SUZ emailed me prior to going on VACATION and I would like to thank all who made her DAUGHTER'S BIRTHDAY no longer a BAD DAY but one that she'll NOW not only enjoy but one that she proably will now CELEBRATE LAURI's LIFE rather than mourn her loss FROM NOW ON !!!! !!!!

    AS you all know SUZ is a GREAT WOMEN for all she and I do her, it is she who is the driving force behind this site along with BELOVED ADMIN !!!
    (she's 1 of my best friends & a GURADIAN ANGEL TO ME SO TO SPEAK )

    BUT TOGETHER SHE AND I DO OUR BEST TO GIVE YOU THE STRAIGHT ANSWERS AND IF WE DO NOT HAVE THEM WE WILL DO THE NEEDED RESEARCH TO GET YOU THE RIGHT ANSWERS.

    HAVE A GREAT WEEKEND AND TRY TO GO OUT SIDE AND CHECK OUT THE BEAUTY IN THE LEAVES CHANGING...and GET THOSE FLU SHOTS IF NESSECCARRY !!!!!

    She let me know that BROWNEYED GIRL and I think MARYCAIN would be looking over the site since I was in such pain I could not even sit here.

    Should ANYONE need me for any reason feel free to email me at STJAMES13@GMAIL.COM and I will respond ASAP !!!

    THANKS AND GOD BLESS YOU ALL I HAVE MISSED YOU ALL AND HOPE YOU ARE ALL DOING WELL

    HUGS AND HOPE GOD BLESS YOU ALL

    STJAMES 8)
    MY GOAL IN LIFE IS TO BE AS GOOD A PERSON AS MY DOG ALREADY THINKS I AM.....

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    Hi James,
    I am pretty new here. I have SLE and have had it most of my life although I did not get diagnosed until I was 36 years old. I have been on medications ever since diagnosis. I am now 47 years old.

    I am glad that you are feeling better. I am sorry to hear that the Pneumonia shot did this to you. I hope that the test that you are going to have done next week comes out good for you. I will keep you in my prayers. Hugs, Kathleen
    Live one day at a time: It's easier that way

    Dx with SLE in 1994
    Dx with Sjogrens 1994
    Dishydrotic Eczema 1974
    Severe Osteo-Arthritis

    Meds:
    Imuran 125mg
    Plaquenil 400mg
    Sulindac (Clinoril) 400mg
    Soma prn up to 4 times a day
    Darvacet prn

  3. #3
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    8)
    THANKS KATHLEEN

    AND WELCOME TO OUR LITTLE HOME AWAY FROM HOME !!!!

    I thank you for your kind words and I will be OK !!!!!
    I have to have this test done as I never knew who my mother was until she died and then they found me and I got all her stuff and her medical papers only to find that she and 5 siblings all died from COLON realted cancer.
    So being over the HALF CENTURY MARK my docs wants me to have this test done TOOT SWEET....he had felt things he said were out of the ordinary and I would rather deal with it now when it is early than later when it is an emergency.

    Thanks about the pneumonia comments.....I had a feeling I would get it and just MONDAY they gaveme a flu shot and GUESS WHAT....that's right now not only do I have pneumonia but I had a 101.3 temp last night and have been batteling FLU sumptoms since WEDNESDAY.....

    I wonder if we with these auto-immune probelms should even be getting these shots?????

    I'll find out this week !!!!! AND I WILL post the results of what I am told..maybe we should NOT be getting FLU and pneumonia shots as our immune systems are shot....it may just be making US sicker.

    I'll let ya'll know ASAP !!!!

    THANKS AGIN FOR YOUR WELL WISHES

    HAVE A BEAUTIFULL WEEKEND

    GOD BLESS YOU

    STJAMES 8)
    MY GOAL IN LIFE IS TO BE AS GOOD A PERSON AS MY DOG ALREADY THINKS I AM.....

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    Hi James,
    It seems like you have really bad luck big time with the immunization shots. With this happening, it makes me wonder if we should be getting the Flu and Pneumonia shots. It is frightening that is for sure. I have not gotten either one of them yet and don't know if I will. Hmmmm makes you think you know what I mean.
    I do hope that your test comes out ok. I had to get a colonoscopy last year and thank heavens it came out ok. They thought I had something going on in my colon too. I will keep you in my prayers. Hugs, Kathleen
    Live one day at a time: It's easier that way

    Dx with SLE in 1994
    Dx with Sjogrens 1994
    Dishydrotic Eczema 1974
    Severe Osteo-Arthritis

    Meds:
    Imuran 125mg
    Plaquenil 400mg
    Sulindac (Clinoril) 400mg
    Soma prn up to 4 times a day
    Darvacet prn

  5. #5
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    Default Vaccines

    My rheumatologist no longer recommends routine flu vaccinations for his lupus patients because of his concerns about its safety and efficiency in lupus patients. He does recommend it for some patients like heath care workers or teachers with a high risk of being exposed to flu, but even for those patients, he only gives the vaccine which does not contain preservatives (thimerosol-free vaccine). Anyone allergic to chicken or eggs shouldn't have flu shots.

    People with lupus or anyone whose immune system is compromised should not have any "live virus" vaccine (includes oral polio, chickenpox, measles, mumps, rubella among other) because they can contract the disease from the live virus. They can also become infected by being around someone who has just been vaccinated with a live virus vaccine because those people can "shed" the virus - I actually represented a woman about five years ago who contracted polio after her daughter took the oral polio vaccine. This is an area where lupus patients with young children, or who teach young children, have to be especially careful.

    The injectable form of the flu vaccination and the pneumovax vaccine are "killed" viruses - the nasal form of the flu vaccine FLUMIST is live virus and should be avoided by anyone who is immuno - suppressed. Theoretically at least, you cannot catch the flu from a killed virus.

    What many people don't realize about the flu vaccine is that it's reformulated every year to protect against the three strains of influenza that the CDS thinks will be most prominent that year, based on the strains active in China and Australia the year before. At best it's an educated guess, and if they guess wrong, or you live in an area that has a different strain of flu from the ones in the vaccine, the flu shot offers little or no protection,

    What also happens is that flu shots are often less effective in lupus patients - even in healthy people it takes about two weeks after a flu shot for protective antibodies to be formed, in lupus patients it can take 3-4 weeks, and even then, they will only have 40-50 percent as many antibodies, so they are less protected. If you are exposed to the flu at the doctor's office while getting your flu shot, you can develop flu before the shot ever takes effect. Low-grade fever, headache and body aches are also common side effects, so the shot itself can make you feel like you've got the flu.

    Some rheumatologists think the flu shot itself stresses the immune system and makes patients more susceptible to influenza-like diseases, such as like rhinoviruses respiratory syncytial virus [RSV], adenoviruses, and parainfluenza viruses. There is also some emerging research that suggests yearly flu shots may increase the risk of developing Alzhiemer's disease, so this is also a concern.

    Washing your hands often is the best way to avoid getting the flu - orange juice or vitamin c supplements during flu/cold season, and eating a serving of yogurt with active yogurt cultures every day also reduces your chances of catching cold and flu.

    One thing to be careful about - a lot of natural remedies that claim to prevent colds or flu contain echinachea or goldenseal - people with lupus shouldn't use these because they can trigger a flare.

    The last year that I got a flu shot, I got the flu twice - I haven't gotten once since and whether coincidentally or not, also haven't had the flu. So I'm sticking with the orange juice and yogurt - so far it seems to work.

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    8)
    Thanks for the input MARY it makes sense to me and I was waery of getting it after what the pneuminia shot did to me.

    I am DONE getting those shots....I'll take my chances !!!!!

    THANKS

    STJAMES 8)
    MY GOAL IN LIFE IS TO BE AS GOOD A PERSON AS MY DOG ALREADY THINKS I AM.....

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    Holy cow. I don't understand why my Rheumatologist demands that I get the Flu shot every year. This is worrysome big time. I have not gotten one yet this year and hope that the doctor forgets to mention it to me. I sure won't volunteer it, you can bet on that.

    I know that we can not get the live vacines as they are dangerous due to our immune system problems.

    Years ago my son got the MMR booster to enter Kindergarten and he actually caught the Mumps from it. He was out of school for over a week.

    Mary I think that I saw on the internet where they caution against people who have Eczema getting the Small pox vaccine or even being around anyone that has recently gotten one. I know my son got the smallpox vaccine before he went to Iraq in the Army. I know they don't even offer the Smallpox vaccine anymore to anyone. Did I read this information right. The internet said that this vaccine could kill a person with Eczema.
    I am just wondering if I read that right.

    Kathleen
    Live one day at a time: It's easier that way

    Dx with SLE in 1994
    Dx with Sjogrens 1994
    Dishydrotic Eczema 1974
    Severe Osteo-Arthritis

    Meds:
    Imuran 125mg
    Plaquenil 400mg
    Sulindac (Clinoril) 400mg
    Soma prn up to 4 times a day
    Darvacet prn

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    Default Hi, Kathleen

    Measles, mumps and rubella are all "live" vaccines so a child with a primary immune deficiency does have a risk of actually contracting the disease, although usually a mild case because the virus in the vaccines are much weaker than the "wild" virus.

    People with atopic dermatitis (the kind of exzema that usually develops in infancy) are at high risk of developiing a condition called "eczema vaccinatum", a serious and sometimes fatal complication of the smallpox vaccination. People with other forms of eczema or any other skin condition also have a risk of this, although not as high. The smallpox vaccination doesn't actually contain smallpox virus, so you cannot contract smallpox from being vaccinated - however, people who are immune-suppressed or have other immune deficiencies can contract "vaccina" - which is the virus the vaccine is made from.

    People who live in the same household with a high risk person should also not be vaccinated, because of the risk of exposure. Any vaccinated person needs to keep the injection site tightly bandaged to avoid exposing anyone.

    The U.S. stopped routine smallpox vaccinations in 1972 because the disease has been eradicated in most countries. After the 9/11 attacks President Bush started a voluntary program to immunize health care workers and other first responders because of the threat of a bioterrorism attack - military personnel deploying to high-risk areas such as Iraq have to be vaccinated unless they have a medical exemption. Military personnel who refuse face court-martial and dishonorable discharge.

    Chances are, other than military personnel, you will never be around anyone who's been vaccinated recently, so this shouldn't be an issue.

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    A small percentage of people are allergic to the preservative in vaccines called Thimerisol. It is the same additive in contact lens solution. I am very allergic and I have very bad systemic side effects for several days including injection site pain and reddness, fever, chills, muscle aches and pains, nausea, vomitting. Now I get the preservative free vaccines and feel much better afterwards. Its possible with our messed up immune systems that this could be whats going on

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    8) Hooversmom,

    THAT ALONE is one of the BIGGEST problems with LUPUS....EVERYTHING IS A GUESS....MAYBE A CALCULATED ONE BUT A GUESS NONE THE LESS.

    Some of us have other IMMUNE problems that the DOCS seem to forget.

    THIS IS WHY MUST BE VIGILANT and remind our DOCS what we are taking and what makes us sick or sicker.

    DO your own research and bring it to the DOCS with you and let him explain why or why you should or shoud not get the immunizations.

    HAVINGBEEN IN VIET NAMN I was forced to a ton of IMMUNIZATIONS prior to going overseas...who knows out of that what made me sicker or made my LUPUS come to life??????
    I don't know and really do no THINK MOST DOCTORS KNOW EITHER.

    When someone who is sick stands up and say something there is always some JERK who tries to make them look foolish.

    A PERFECT example is the latest interview with MICHEAL J FOXX.....some MORON actually is claiming that he stopped taking his meds so he would shake more and look worse than he really was !!!!

    CMON how low can these DOC and POLITICIANS GO?????

    Yeah like the guy is gonna make himself sicker and risk DIEING just to get his point acrosss to some know it all politician who actually KNOWS NOTHING !!!
    MAYBE we should have some of them who are against stem cell research n stuff and inject them with PARKINSON'S and LUPUS and then they can tell us FIRST HAND how badly they need to put some money into these terrible diseases and do something.

    Wonder how they would re-act to THAT IDEA??????

    Since thay obviously think it is no big deal !!!!

    ST JAMES 8)
    MY GOAL IN LIFE IS TO BE AS GOOD A PERSON AS MY DOG ALREADY THINKS I AM.....

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