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Thread: Very sick, don't know what to do.

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    Default Very sick, don't know what to do.

    The friday before Christmas, I had to go to see my primary, I had a bad cough. Of course it had turned into Bronchitis. He gave me antibiotics and it got better, within a few days.
    The weekend of New Years Eve, I have had alot of pain, joint and muscle pain. I called the Rheumy and he told me to take Prednisone for 7 days, which helped with the pain, but I started to cough again. I was real short of breath.
    This last saturday, I had to work from 6am-2pm. As soon as I got out work, I went to a Urgent Care, because I had a hard time breathing, not that I couldn't breathe at all, but it was hard to take a breath. My saturation was at 90 and I received a Nebulizer treatment, it improved my breathing a little and the saturation was at 93. The doctor thinks it might be walking Pneumonia and gave me more Antibiotics, which I will take the last one tomorrow.
    I have been home from work since Sunday, but have to go back on Thursday. I feel a little better, but not much. I am still short of breath with very little activity.
    My rheumy said that it takes awhile until I will be better and to give it time.
    Now I have read that MTX can cause shortness of breath, I haven't been taking it since I got sick, three weeks ago.
    I will see my rheumy as soon as I can and tell him that I want to stop MTX all together, since he lowered the dosage because of bad liver tests, it has not helped me whats so ever. So I am thinking, why put this poison in my body, if it doesn't help.
    I am thinking to go back on Plaquenil to prevent further damage to my organs and joints, but no more MTX. He told me if the MTX does not help, he would start me on Embrel. I don't want any of that anymore.
    Yes I do have alot of pain, but nothing has helped, except when I was on a high dosage of MTX.
    I am so sick of all this.
    I am not going to do anything without the rheumy's approval, but I don't want that crap in my body anymore.
    Still short of breath and having to back to work on Thursday. I could cry.

    Debbie

    Sorry for the whining.
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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    Debbie, I'm afraid I can't help you much. I am still waiting for a firm diagnosis, so for now, I don't take any of that. I do know that people with chronic diseases often have to make tough decisions -- decisions regarding treatment and medications. Maybe your breathing problems are not from the MTX but rather from an infection that hasn't ever really cleared up completely. Those kinds of infections can be difficult to clear up, and sometimes it takes trying several antibiotics to find the right one. I hope you feel better, mentally and physically, very soon. Autoimmune diseases are so strange -- so many symptoms that come and go. I'll say an extra prayer that this one for you goes quickly and that you can continue to take the MTX that helped you with the other symptoms. Hang in there!

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    Quote Originally Posted by jolynnhughes View Post
    Debbie, I'm afraid I can't help you much. I am still waiting for a firm diagnosis, so for now, I don't take any of that. I do know that people with chronic diseases often have to make tough decisions -- decisions regarding treatment and medications. Maybe your breathing problems are not from the MTX but rather from an infection that hasn't ever really cleared up completely. Those kinds of infections can be difficult to clear up, and sometimes it takes trying several antibiotics to find the right one. I hope you feel better, mentally and physically, very soon. Autoimmune diseases are so strange -- so many symptoms that come and go. I'll say an extra prayer that this one for you goes quickly and that you can continue to take the MTX that helped you with the other symptoms. Hang in there!
    Thank you so much. You are right, sometimes it just takes a long time to get well, especially us lupies have a hard time getting well sometimes.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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    Oh Debbie my friend. My heart hurts for you. I am so so sorry that you are feeling this bad.

    I know how frustrated you are right now but please don't make any rash decisions. Try and get to a place where you can breathe before you make decisions about taking or not taking meds. Remember that often the pain you feel and the outward symptoms are often just a small sample of what is happening internally. I know you won't do anything without talking to your doctor but I also know how frustrating and heartbreaking this disease can be.

    Have they tried giving you symbicort (so) or something for asthma? Maybe an inhaler? I had the hardest time breathing early on (before my current level of steroids) and those helped me so much. Maybe you should try seeing a pulmanologist and have them try to help with the breathing issues.

    Don't forget that we are here for you!
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    a little of my history, from a similar complaint.

    i always had a small lung capacity, but large lungs.
    i had trouble exhaling fast.
    and i was always getting sick with flu like symptoms.

    i tried eveything.
    i would take double dosages of antibiotics for a chest infection,
    as 1 was never enough to stop it.

    one of the main causes was that i had inflamed and blocked synuses.
    these caused all sorts of indirect problems.
    once i had them cleaned, they would not cause bacteria infections in my chest.
    they were resonsible for a lot of my inflamed chest muscles too.
    i still have problems......
    but nothing like before.

    have you had your upper respitory system checked?
    it may help

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    Quote Originally Posted by tgal View Post
    Oh Debbie my friend. My heart hurts for you. I am so so sorry that you are feeling this bad.

    I know how frustrated you are right now but please don't make any rash decisions. Try and get to a place where you can breathe before you make decisions about taking or not taking meds. Remember that often the pain you feel and the outward symptoms are often just a small sample of what is happening internally. I know you won't do anything without talking to your doctor but I also know how frustrating and heartbreaking this disease can be.

    Have they tried giving you symbicort (so) or something for asthma? Maybe an inhaler? I had the hardest time breathing early on (before my current level of steroids) and those helped me so much. Maybe you should try seeing a pulmanologist and have them try to help with the breathing issues.

    Don't forget that we are here for you!
    Thank you Mari,

    Yeah, I am on Symbicort and Proventil, neither of them help. I do have Asthma, but this is different, when it's from Asthma, the inhaler always helps, this time it doesn't.
    Well, both the primary and the rheumy say, that I have to be patient, sometimes an infection can take months to heal.
    About the MTX, I am just going to talk to the rheumy, to see what he thinks.
    You know, I have had a dry cough for many months and the rheumy always asked at every visit, if I still had it, I told him I did and he would say, " we have to keep an eye on it". Well, now, that I also have shortness of breath, I have researched it and every time when I put in " dry cough, shortness of breath and lupus", this is what pops up, CHRONIC DIFFUSE INTERSTITIAL LUNG DISEASE. It looks like it goes hand in hand with Lupus sometimes.
    I guess I have to wait and see, what the doc wants to do next.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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    Quote Originally Posted by steve.b View Post
    a little of my history, from a similar complaint.

    i always had a small lung capacity, but large lungs.
    i had trouble exhaling fast.
    and i was always getting sick with flu like symptoms.

    i tried eveything.
    i would take double dosages of antibiotics for a chest infection,
    as 1 was never enough to stop it.

    one of the main causes was that i had inflamed and blocked synuses.
    these caused all sorts of indirect problems.
    once i had them cleaned, they would not cause bacteria infections in my chest.
    they were resonsible for a lot of my inflamed chest muscles too.
    i still have problems......
    but nothing like before.

    have you had your upper respitory system checked?
    it may help
    Thank you Steve,

    I do not have any sinus problems, not that I know of anyway. But I will mention it the next time I'll see my primary.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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    Don't you love Lupus? NOT! We do love you though!
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    Quote Originally Posted by tgal View Post
    Don't you love Lupus? NOT! We do love you though!
    Oh Mari, you are so sweet.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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    Have they checked to make sure you dont have fluid in your lungs?

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