This topic contains 14 replies, has 6 voices, and was last updated by  Brittany Foster 1 month ago.

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  • #21001
     Brittany Foster 
    Keymaster

    One of our members, Steve @exjarhead57730, recently commented about his use of the medication Prednisone. I don’t have much experience on long term use of this medication, but when I am having a flare up of bronchitis or having any type of upper respiratory infection, I am told to take it in a tapering dose.

    Steve would like to know, “Anyone have any feedback on the use of Prednizone? It really helps me breathe better at the altitude my shop is at and it can actually help me work better. Makes my feet and ankles swell, but other than that, I am not getting any other side effects. Long term, maybe? How long can a person stay on it?”

    Do you have personal experience with this medication? What side effects does it cause for you? Do you also notice some swelling while taking it? Share in our forums to help give feedback to our forum member!

  • #21008
     Dawn Alexander 
    Participant

    I have had two experiences with Prednisone taken both for exacerbations. The first was back in 2014 when they did taper the medication. My latest experience was just a week ago when they prescribed even doses of two pills for five days and that’s it. It is a miraculous med. It cleared up mucus and reduced swelling. It and the antibiotic also prescribed reduced my elevated temp. I haven’t felt this good in years. I should have gotten on it sooner. People with blood sugar issues should be careful because Prednisone can cause levels to increase exponentially.

    • #21009
       Brittany Foster 
      Keymaster

      Dawn,
      Even though prednisone taper made me anxious and too hyper at first, it definitelt greatly reduced the amount of inflammation that I felt in my lungs and helped the pain that I was having from my respiratory infections. It can do a lot of good but like you said, you do have to be monitored for certain levels on this medication and you wouldn’t want it to mask an infection if you were on it long term too.

  • #21016
     Colleen Steele 
    Keymaster

    I’ve had lot’s of experience with Prednisone. I’ve taken it on a taper several times and so has my husband. I don’t recall my son being on it much when he had PH but he’s been on it continuously since transplant. Normally he is just on 5MG’s 2 times a day. His body is use to it now and so doesn’t experience any side effects. But there have been times he has been on high doses for several week’s and that was really difficult. It would cause horrible migraines, muscle aches, insomnia and make his bones feel like they were breaking. Then of course there is the increase in appetite and weight gain. However, prednisone does it’s job and quickly. When I’ve taken it for respiratory problems I felt improvement within a day or two.

    Definitely, it is so important that you follow the treatment plan properly. Usually patients are placed on low dosages and with a taper they are finished within a week or two. Being on it long term can cause many problems but it’s a necessary evil for transplant patients.

    • #21035
       Brittany Foster 
      Keymaster

      Colleen,
      I know what you mean with the medications being a “necessary evil”. On one hand you know that they probably aren’t the best things to be taking long term especially because of some of the long term side effects, but then again you are forced to think back to those short term goals of what is going to make him feel better day to day. I struggle with this with thinking about a lot of the medications that I’m on and a lot of the treatment plans. I can’t really think too much about the long term and what that will look like, I have to shift my focus to treatment in the here and now.

  • #21017
     Shannon 
    Participant

    I have been on Prednisone for 20 years straight. At first it’s a wonderful medication that makes you have energy and I could walk, work and keep going for days. But eventually your body becomes use to it and the side effects are horrible! I wish I could stop taking it but unfortunately after all these years it’s the only thing that’s keeping me alive. I get high doses when I am in the hospital. But everyday I take 20mg sometimes up to 100mg a day. I wish I would have known all the side effects years ago. I have stomach ulcers from it that break open and I throw up blood. I have thyroid problems and have eye problems. I could go on but I won’t. I don’t think I would have taken it if I would have known I might feel great for a few months or even years but the side effects hit me like a bomb. My advice and take it as you want. Be very careful with it. And try to taper off of it as soon as you can.

    • #21036
       Brittany Foster 
      Keymaster

      Shannon,
      I feel your pain with the stomach ulcers and the throwing up of blood. I know that is never a good feeling and it is so alarming to see happen to your body. It must hurt to feel like there is not much that you can do about it except do all that you are supposed to do to take care of yourself. But even when we are taking care of ourselves, our bodies have ways of pushing against us. That’s the part that can seem so unfair.

  • #21040
     Shannon 
    Participant

    Brittany, stomach problems are the worst! And as soon as I see my throw up is black I get bad anxiety from it. Every time it happens it’s always harder and harder for the doctors to get it stopped. It’s a awful feeling. I am sorry you have to go through that. And yes your right even though I try and take care of myself it is unfair that I am still so sick. But I live for the good moments and the rest just day by day. Just asking? When your stomach is bleeding do they have to pump it out? With a stomach pump? I think that’s what I hate the most. Just talking about it makes me want to throw up! Lol

    • #21080
       Brittany Foster 
      Keymaster

      Hi Shannon,
      How was your weekend and how have you been doing so far this week? I am thinking of you and know that you always go through so much as well and it truly is hard to balance everything including trying hard to maintain some type of “normal” social and family life. As far as the GI bleed goes, it was mostly my esophagus that was the problem that was bleeding. They usually just wait it out, make sure to check my blood levels so I don’t lose too much blood and get more anemic. I did lose a bit last time from throwing it up which scared me so badly, but luckily it stopped and slowed down on its own.

  • #21053
     Adele 
    Participant

    Yes, my Pulmonologist at that time, Dr.mRichard Channing, an excellent doctor did prescribe Predisone for inflammation. I have used it when needed it it always helped the symptoms.

    Perhaps we need more discussion on this medication. Doctor responses vary on its use, but from my experience as a patient with a PH, and DHF….congenital, I have found it helps.

    • #21072
       Brittany Foster 
      Keymaster

      Adele,
      I agree that more discussions definitely need to happen around topics like this . Especially when it comes to hearing from patients and their own experiences firsthand. Doctors and researchers could certainly learn a lot from us. It has definitely helped with my inflammation when I am having respiratory issues and distress and has put me out of that panic feeling I usually get when I have respiratory troubles. I’m sure you can relate.

  • #21064
     Colleen Steele 
    Keymaster

    Adele,
    That has been my experience with prednisone as well. It has always helped both myself and my son with our health issues. The side effects can get pretty bad depending on the dosage and how long you are on it. The worst for me is insomnia, insatiable appetite and weight gain. For my son it’s migraines, muscle and joint pain and weight gain. It’s always been worth tolerating the side effects in order to be able to breath better.

    • #21073
       Brittany Foster 
      Keymaster

      Colleen,
      you aren’t the first one that has mentioned the fact that prednisone can make people have an increased appetite that feels pretty insatiable. That is always the hardest part of taking this medication for me. I think it’s because I usually have these CRAZY cravings (back when I could eat just about anything) and most of these cravings were salt based snacks and foods that definitely weren’t good for me. If I craved fruits while taking this then bring on the prednisone, but too much junk and salt always made me feel terrible.

  • #21083
     Jimi Mcintosh 
    Participant

    I have been on prednisone for over 12 years, it seems to be my “go to” antibiotic and works quickly to help clear my multiple bouts with asthma, bronchitis, pneumonia. Depending upon the severity the doses have been from 20 mg to 100 mg per day for up to 2 weeks, usually a 2week break and another course. I keep a script for 50 mg for sudden flare ups. It is a miracle drug with sometimes serious side effects, the burst of energy, deep breaths, overall good feelings, is great, just doesn’t last long enough. I eat like someone that has smoked several joints. Long term kidney and liver issues, weakens immune system, make you prone for an opportunist infection.

    My daughter used it continuously from age 15 for lupus, until
    More drugs were developed. Like with PAH, there was not much else to ease the pain and suffering. It eventually leads to organ failure, chronic infections, weaken bones, etc., prednisone needs to used with caution and only as prescribed.

    • #21090
       Brittany Foster 
      Keymaster

      Jimi,
      good to know about those long term side effects. Although it does make people feel better in the short term, it definitely has some dangerous side effects that people need to look out for. If people can’t help but being on something like this long term, I think that it is still good to have knowledge of the side effects so you know what to look out for. I’d rather know than not know, but maybe that’s just me. Sometimes it does make me super anxious to think about side effects of medications that I’m on especially ones that really aren’t studied long term.

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