This topic contains 19 replies, has 5 voices, and was last updated by  Brittany Foster 1 month, 3 weeks ago.

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  • #19378
     Brittany Foster 
    Keymaster

    Recently, I was prescribed Prednisone (which I have taken in the past) for my bronchitis and pneumonia. Although it helped to clear up the inflammation I was experiencing as a result of all the coughing, there were some unpleasant side effects that went along with it. I didn’t know that they were side effects of the medication until calling my doctor and talking with her.

    According to Mayo Clinic,: “Prednisone provides relief for inflamed areas of the body. It is used to treat a number of different conditions, such as inflammation (swelling), severe allergies, adrenal problems, arthritis, asthma, blood or bone marrow problems, endocrine problems, eye or vision problems, stomach or bowel problems, lupus, skin conditions, kidney problems, ulcerative colitis, and flare-ups of multiple sclerosis. Prednisone is a corticosteroid (cortisone-like medicine or steroid). It works on the immune system to help relieve swelling, redness, itching, and allergic reactions.”

    For me, it caused extreme irritability. My mood changed in the snap of a finger and it really escalated my emotions. It got to the point where I would cry at what seemed like EVERYTHING ! I also reacted very strongly to emotional triggers. My feelings got the best of me. It made me more jittery and anxious than usual as well.

    Have you had to take steroids like this before? Are you taking them on a daily basis? What side effects have you experienced from prednisone and what side effects bothered you the most? For me, it was the emotional and mood disturbances.

  • #19388
     Jen Cueva 
    Participant

    Brittany, you’re not alone! Thanks for the information.

    Unfortunately, just last year, I learned of this side effect. I had lower lobe pneumonia and a gout flare-up. I had been on 2 rounds of different antibiotics. I had also been on low doses of Prednisone and also a steroid injection.

    I was a ” hot mess”, upon arrival at my Cardio appointment. My hubby told her as I did about my mood swings, irritability, and crying at anything. I reminded her of the two rounds of meds. She immediately told us that it was the Prednisone.

    I had been on low doses of Prednisone in the past on numerous occasions. I had never had this side effect. Usually, I’m hungry and maybe a little jittery. Those were no problem at all compared to emotional and mood issues above.

    I had never heard of anyone complain of this side effect from prednisone, even in my nursing days.

    I hope this week is better for you. What did they do? My Cardio just instructed me not to take it for long periods and not two rounds, obviously. I think that and the injection was too much. She said if I need larger doses of steroids, I may require hospitalization.

    • #19403
       Brittany Foster 
      Keymaster

      Jen,
      The struggle was definitely real as far as the emotional mood swings and the crying. I can relate to what you must have been going through at the time. It was so hard to even attempt to stabilize myself. I feel like my mood has been pretty up and down anyways just because of the fluctuations in my physical health but this added to it really just threw me over the edge. I’m glad I’m not alone in these feelings though and I’m sure it does effect others as well.

      For me, I called my doctors to let them know about these side effects. They did a retake of x-rays and I was cleared of the pneumonia so they felt comfortable with lowering my dosage of it and eventually I tapered off completely this weekend and have been feeling a lot more stable the last few days. Even with the decrease dosage I felt a difference.

  • #19390
     Colleen Steele 
    Keymaster

    Brittany and Jen, Prednisone is something I have had a lot of experience with because I’ve been on it, my son has been on it and my husband. My son has had the worse experiences with it because, especially post transplant, he has been on very high doses at times. He was use to the mood swings, increase in appetite, insomnia and headaches but when on high doses, the bone breaking pain he experienced was new. He literally felt like every bone in his body was broken. It was really bad and it took almost a month once he tapered down to his normal, 5mgs two times a day, that he started to feel better.

    Prednisone is great in treating whatever you are taking it for, in fact, it seems to help almost immediately, but the side effects can be awful! When I take it I experience hot flashes and insomnia, then for some reason, the week after taking it, I experience an insatiable appetite.

    Both me and my son have experienced mood swings with prednisone, depending on the dosage.

    How much longer will you be on it Briattany? Are you on a taper?

    • #19395
       Jen Cueva 
      Participant

      Wow, Colleen, you’ve certainly had some experiences with Prednisone.

      Since all three of you have taken it, it’s interesting the variety of side effects. I haven’t noticed an increase in bone pain when I took it. I may have when it was a double course so fast. I hate that your son had to suffer from that.

      For myself, I agree, once I started to taper down, I noticed an improvement. Unfortunately, the side effects tend to linger even once you’ve tapered off, for some.

      I agree, Colleen, it’s useful to help when it’s needed. But, sadly these meds have some harsh side effects.

      I hope that you are tapering off soon, Brittany.

    • #19404
       Brittany Foster 
      Keymaster

      Hi Colleen,
      Luckily i am off the higher dosage and off of it completed now after tapering down this past weekend when I let my doctors know about the side effects I was experiencing. They knew it was coming from the medication and they advised me to stop it. I can’t even imagine the pain that your son must have felt when he was on such a high dose. That is scary to feel that level of bone pain from a medication. I hope he didn’t have to endure that symptom for too long even though it seems like just a few days of that would be TOO LONG for anyone! Is he still on a low dose of the steroid post transplant? I know someone who had CF and received a lung transplant and will be on long term prednisone for life I think.

      • #19412
         Colleen Steele 
        Keymaster

        Brittany, yes, he will always be on a low dose. It’s just 5 mg’s 2x’s a day. He manages fine with that. When he went through rejection he was on a very high dose and the bone and joint pain was unbearable!

        Remember when we discussed the inappropriate medical sense of humor that we all tend to have? When my son was in daily pain from the prednisone and dealing with symptoms from rejection he text me this clip to a SpongeBob episode. Sadly, it was so accurate to how he looked and how he felt, but we both laughed like crazy at this. I still crack up when I think about it. What else can you do but laugh sometimes? It’s either laugh or cry, right?

        https://www.bing.com/videos/search?q=Guy+made+of+glass+sponge+bob&&view=detail&mid=C807F97BDDE1F630D5D2C807F97BDDE1F630D5D2&rvsmid=020BD43F86E0B19A13C9020BD43F86E0B19A13C9&FORM=VDQVAP

      • #19433
         Brittany Foster 
        Keymaster

        Colleen,
        Your son sounds like he has such a similar sense of humor to mine !! I quote movies or send my mom memes or gifs all day long hahaha!! My most recent one I sent her was when I was on the toilet with some GI issues and had to be on that toilet seat for longer than I wanted to be because of taking some extra laxatives to clean out my system and I sent her the gif of Melissa McCarthy from the movie Bridesmaids when she is going to the bathroom in the sink of the bridal shop after they all eat and get food poisoning hahaha! Have you seen the movie? If you have, you will understand the reference I’m making.

      • #19451
         Colleen Steele 
        Keymaster

        Brittany, Unfortunately I had just taken a gulp of coffee when I read your “Bridesmaids” comparison! LOL! You are funny! Yes, I’ve watching that movie several times. I’m glad you appreciate my son’s humor. After I shared his joke I was worried it wouldn’t be well received.

      • #19457
         Jen Cueva 
        Participant

        OMG, Brittany, that sounds like something my Daughter would send me. Haha

        That movie Bridesmaid is definitely one for when I need to laugh.

        I’m still laughing as I’m thinking of my KK sending me all Thr funny memes and gifs. Haha

      • #19419
         Jen Cueva 
        Participant

        Brittany, I’m happy that they stopped the prednisone. It’s no fun when you start having those mental and emotional side effects. I hope you are feeling some better this week.

        Colleen, poor guy! That SpongeBob video was funny, he must have been in some horrific pain. Is he only on the low dose, pretty much indefinitely now? I know transplant patients who were on it as well. I hope that the low ” maintenance ” dose isn’t too rough for him. Does he still have the usual side effects? Or has his body adjusted to the higher dose and does well on the lower dose?

      • #19434
         Brittany Foster 
        Keymaster

        Jen,
        My head and thoughts definitely are a lot more clear than they were last week! I was just in such an emotional mood swing that I don’t even remember half of the things I said or did last week. It’s crazy the things that your brain can just “block out”. It was like I was actually blacked out for almost half the week. I had to stop and ask myself, “did I really do that?” a couple times. Apparently my pulmonary doctor called me because I called in a panic about my GI appointment that was upcoming. He called me that night and I legit don’t even remember talking to him!

      • #19458
         Jen Cueva 
        Participant

        Oh no, Brittany! I’m happy to hear that your head and thoughts are some clearer this week.

        I tend to have those panics. I’ve sent calls, and emails, too, when my sodium is too low and my fatigue and side effects kick in. That is a horrible feeling, and it’s like it won’t stop.

        I’m so glad this week is better for you, as I know you have a busy weekend ahead, moving!

  • #19428
     V.R. Peterson 
    Participant

    Brittany, I’m so sorry you’re having to deal with these side effects. Boy, do I ever know about them! Several years ago, I had pneumonia that didn’t go away with just antibiotics, so the doctor put me on steroids. They don’t call it roid rage for nothing! I had the tears too, but the anger was so bad that I had to stay away from my family for their protection. It really scared me to feel that much anger or hatred toward anybody, much less the family I love. Thankfully, it went away after I stopped taking the pills.

    • This reply was modified 1 month, 3 weeks ago by  V.R. Peterson.
    • #19435
       Brittany Foster 
      Keymaster

      Yes, this is EXACTLY what I went through. The anger was just OVER THE TOP about every little thing. To the point where people were actually commenting that they were “afraid of me”. I mean, come on! I’m literally 5 foot 2 and 98 lbs, there is NOTHING to be afraid of hahahah! But with that kind of aggression I guess anything is possible. Definitely will be giving out warnings to people the next time I’m on it. They can proceed with caution or enter at their own risk . Can’t say I didn’t warn em!

    • #19454
       Jen Cueva 
      Participant

      Wow, V.R, I didn’t realize it made so many crazy, lol 😂 it’s ok to laugh now but I know it was far from funny experiences.

      @jimi, that’s exactly what happened with me, I was on it for several weeks. Then, I also had a steroid injection. That stuff can be awful, to say the least. I definitely am hoping I don’t need it anytime soon.

      Brittany, thanks for sharing your experiences as I thought I was one of the rare people this happens with. Obviously, many here have had some of the same side effects.

  • #19453
     Jimi Mcintosh 
    Participant

    I am sorry Brittany that you are experiencing some of the most common side effects of steroids, anxiety, short-temper, constant hunger and mental confusion. Be careful and try not to take it too often, 1-2 weeks on, and 1-2 weeks off. I call it legal “crack” the stronger the dose the greater the side effects. It works fast to clear up mucus and congestion. For years it was the drug of choice for Lupus, it is a major component of nasal sprays, decongestants and some skin creams.

  • #19466
     Jimi Mcintosh 
    Participant

    The weather is about to change and there have already been flu cases reported. I predict a very cold wet winter, so please as soon as possible
    Try to get the following shots: pneumonia, flu and shingles, our immune systems are already weak and compromised. I am going to get the flu shot, once I am over the pneumonia and off steroids for a week.

    Here is some info on co-pay and medicine assistance, in case you missed it this July.
    Three PH Copay Assistance Funds Open

    Three copay assistance funds are currently open to help individuals with pulmonary hypertension (PH) pay unreimbursed copays for PH medications. Funding for copays is now available through the PAN Foundation, Patient Advocate Foundation and The Assistance Fund, but these can close at any time when funds have been distributed.

    PAN Foundation

    Must be insured by Medicare and insurance must cover the medication for which the patient seeks assistance.
    Maximum grant: $5,300 with the option to apply for a second grant within the year if funds are available.
    Apply at https://www.panapply.org/ or call 866-316-7263.
    Patient Advocate Foundation

    Must be insured by Medicare, Medicaid or through military benefits; insurance must cover the medication for which the patient seeks assistance.
    Maximum grant: $7,000.
    Apply at https://www.copays.org/ or call 866-512-3861.
    The Assistance Fund

    All insurance types.
    Maximum grant: based on cost of medication being covered.
    Apply at https://tafcares.org/program-listing/ or call 855-649-8623.
    For updated information about charitable assistance funds for PH, visit the Pulmonary Hypertension Association’s Online Insurance Guide.

    • #19482
       Colleen Steele 
      Keymaster

      Jimi, thank you so much for sharing this important information! This might really help some of our members.

    • #19483
       Brittany Foster 
      Keymaster

      Thank you so much for this good info, Jimi! Like Colleen said , I know your words of advice will really help people in these forums. It is a good reminder to stay up to date on your shots too. It takes awhile for our immune systems to bounce back after procedures and surgeries too. I feel like this is the time when I am most likely to get sick or catch something. Seems to always happen at the worst times !

      right with trying to take breaks from the prednisone when needed too and if you CAN! It really does have these side effects that not everyone talks about either !

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