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Thread: Excited about my new medicine!

  1. #21
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    Sorry to make you blush, Jacquie! Thanks for the good wishes for the New Year, and all the same to you!
    Anne, dx'ed April 2011

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    Blushing in a good way!
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

  3. #23
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    Wonderful news that you found a medication to help you function and feel better! You mentioned that you need to carry an epipen now. My daughter does also as she is allergic to tree nuts. The company that makes the epipen has a program where they will pay your copay. Unfortunately, I found out about it a couple days after I got them, but next time will use it. It's a form you download and turn into the pharmacist when getting your prescription filled. I can't remember the name of the company but found the link for the form on a website called coupons.com.
    We must let go of the life we have planned so as to accept the one that is waiting for us.
    Joseph Campbell

    When sleeping women wake, mountains move.
    Chinese proverb

  4. #24
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    Have not been very active lately. Unfortunately I have had another downturn. Have not gone to the hospital...but my hubby has come very near to calling 911. I think a virus got me perhaps. I was not doing well before my monthly shot. They went ahead with it but the PA prescribed prednisone again. Bummer. I had been so happy to have achieved about 8weeks pred free. I also knew my allergist wanted me to have a pred free lab test done to check the effectiveness of my recent re-vaccination with the pneumovax. This is in aide of investigating a possible immune deficiency. I had to be pred free for a certain period after the vax, and I needed one more week. So, I decided to postpone the pred to my trip for my regular appt a week later with my pulmonologist. I have never been really bad when he has seen me, so I thought there might be some value in that. Probably not smart. It was a very bad week confined to my chair with only laborious trips to the bathroom. Went for the lab test. Walked the few hundred feet necessary to and from the car, and promptly had a gasping for breath, should we call 911 situation. Got over it. Took my prednisone and rescue inhaler and continued to pulmy. Hubby wouldn't let me walk a step...took me in a wheelchair. I guess my pulmy deals only with the very most serious cases. I only got in to see him because of my, since discounted, diagnosis of Wegeners. Anyway, he evidently did not think I was all that bad. Acted extremely surprised that I would be using my nebulizer every 3-4 hours, including during the night because I would wake up gasping. He did give me a new script for the coughing, and a script for thrush. When concluding our appt, he said "Well, we can schedule you for six months if you want, or we can just go to an as needed basis.". We decided on the six month...but I feel he is wanting to ease out of seeing me.

    I still have great hopes for the Xolair. I know from my reading that it reduces asthma exacerbations. It does not eliminate them. If I can get down to even only 4 exacerbations a year, that will be a win for me. Meanwhile, I am better today. The worst part is trying to sleep when lying down or even reclining in my chair means a continuous annoying wheeze. But this too shall pass. I should be able to make dinner tomorrow night. My hubby will be thrilled!
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

  5. #25
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    Jacquie, I'm glad you feel better today, but this all sounds pretty scary. I hate to hear of docs, and mine has done it, too, who sit there and say you don't seem all that bad when you have actually had potential 911 moments. And he talks of easing you out of his list of patients. I think if you are having any exacerbations at all he should be willing to be available to you on short notice, indefinitely. Unless there is someone else more suitable. Is he the one who prescribed the Xolair? Do you take any preventative measures like steroid inhalers? When I was having asthma those worked pretty well for me, but if yours is a lot worse, maybe the pred is better. The good thing is that if you have been without pred for 8 weeks, at least you know your adrenals are functioning OK, unlike many of us Weggies, and if you have to take short, or moderately short, runs of pred for the asthma, you won't likely run the risk of losing adrenal function. Of course, I understand your not wanting it at all. But it is better than 911 moments. Keep us updated!
    Anne, dx'ed April 2011

  6. #26
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    Thanks Anne. This guy did not prescribe the Xolair. That comes from my allergist. She has seen me in bad shape. This was my pulmy. Whenever I have seen him, I have been on, or recently on, pred and so am in relatively good shape. I forgot to tell him that my PFT had dropped from 80% in January to 41% last week. But you would think me sitting in a wheel chair would have made the situation clear. He did order an xray...but made it optional as he was "only ordering it from an abundance of caution". I opted to have the xray done of course. Waiting for results. It bothers me, but not overly. My allergy/asthma doctor and my primary care are both awesome, so I feel I am getting good care overall.

    Thanks for pointing out the upside of the adrenals. I had not thought of that. I DO take an inhaled steroid. Symbicort....two puffs, twice a day. I think it has been effective. I use a nebulized medicine with a long name. I think DuoNeb is the brand name. I only use it when I have shortness of breath and chest tightness. I've used it so much that I now have thrush. Awesome.

    The scary syndrome is when my chest tightens up, and the cough is unproductive but persistent. I think it causes swelling of the windpipe and a reduced ability to fill my lungs with air. Sometimes the cough loosens up a little and I can't stop coughing long enough to get air. Fortunately, a throat lozenge will soothe that reaction...although I am always afraid I might inhale the lozenge. So I put it as far into my cheek as I can. I think the thrush was causing this throat irritation. I am now using a thrush "pill" that looks like a very thin Tums. I put it in my mouth and let it dissolve and do this 5 times a day. Between that and the pred, things have calmed down considerably since yesterday. Hopefully I can end the pred taper and the Xolair will help give me at least another 8 weeks off!

    As always....thanks for always being there for me Anne!
    Last edited by BookNut; 02-26-2015 at 02:37 PM.
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

  7. #27
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    Hi Jacquie,
    I am really sorry you having so many breathing issues.
    Just FYI, steroids feed fungus, such as thrush.
    Did they ever do a HRCT (High Resolution Computed Tomography) scan of your lungs?

  8. #28
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    Quote Originally Posted by mrtmeo View Post
    Hi Jacquie,
    I am really sorry you having so many breathing issues.
    Just FYI, steroids feed fungus, such as thrush.
    Did they ever do a HRCT (High Resolution Computed Tomography) scan of your lungs?
    Thanks! Yes, thrush is related to steroid use, though mine came on when I was not on prednisone. It is probably because I was not washing my neb equipment often enough. I never had the problem before, but thinking back, I used to be on an antifungal pill every day. My PCP thought my asthma problems might be due to a fungal infection. that proved not to be the case. Now that I don't take the pills I have to be more careful. I am now soaking the neb equip in vinegar and hot water every night. And I rinse my mouth after every use with mouthwash.

    Not sure what kind of CT scans I have had. All I know is I have had 3 done without contrast and 1 with contrast. The most recent one was without contrast done at the Cleveland Clinic on October 10. Surprise, Surprise. Cleveland Clinic is the most inefficient organization I have ever encountered in my life. I have requested ..... three times now.....that they send all my records, including the actual CT on a CD to myself and my doctors. I have paid there outrageous fee of $35 so they can send the info to me personally. So far, not one of my four doctors has recieved the scan. And naturally, I did not get it either. I don't know why they have been so unhelpful to me. Everyone else seems to do fine with them. We have bent over backward to be patient. My conversations with them have been pleasant. I am basically a pretty friendly and reasonable person. After a three month run around, I finally had to express my displeasure to the doctor's secretary and it was only then that I got any kind of action. And yet...the inefficiency persists. Go figure.

    As near as I can tell from the narrative of the latest CT, there is bronchiectasis, which has existed since the first CT, and there are some swollen lymph nodes. The pulmonologist tells me the chest CTs and xrays I have had show lungs in pretty good condition other than the minor bronchiectasis. He refers to my asthma as an "asthma variant". I have begun researching that. The most common variants seem to be cough variant asthma and sinusitis variant asthma. I think i have both going on. Cough variant asthma has been associated with high blood pressure meds, among others. I have asked my PCP if I can go off my blood pressure meds as a trial. My diet has improved greatly since I retired. I would take my blood pressure reading twice daily and go,back on the meds if the pressure goes up. She has agreed to a trial, so I will start that after I am done with the prednisone. Interestingly, all these breathing issues came on 4 years ago...just a few months after starting the blood pressure meds. The first pulmonologist I had switched me to Losartan, since he said that the kind I was on sometimes caused a cough. There was no improvement...so I never thought about it again.

    Thanks for listening! I think both of us are interested in research. I am a retired librarian as you might know.
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

  9. #29
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    Quote Originally Posted by mrtmeo View Post
    Hi Jacquie,
    I am really sorry you having so many breathing issues.
    Just FYI, steroids feed fungus, such as thrush.
    Did they ever do a HRCT (High Resolution Computed Tomography) scan of your lungs?
    Thrush is also more common in people with a suppressed immune system or after using an antibiotic too that sets up the esophagus for thrush fungus.

    Sterilizing the neb equipment often and even our nasal rinse stuff is a good idea that is easy to overlook. Soaking in a mild bleach solution is one thing that seems easy and cheap too.
    Last edited by drz; 02-27-2015 at 10:26 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

  10. #30
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    Thanks Drz. I am on long term antibiotics which might be a contributing factor. And a great reminder about the rinse bottles.
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

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