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IV steroid megadose and possible side effects?

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    IV steroid megadose and possible side effects?

    Hi everyone. I'm here as the husband of a newly diagnosed MS sufferer.


    I'm learning as I go as we both are, but there are some things that doctors won't tell you or simply won't accept responsibility for so I have to ask people for anecdotal evidence, and hopefully you guys can be a source for me.


    I could write a novel, but I'll get to the point. My wife was given two days of 1000 mg Solu-Medrol IV in the hospital and then 1250 oral at home to help with calming down the lesion she had which started this off.


    I know all docs have different protocols, but she was not titrated down after the 3 day dose with anything.


    She was actually feeling a lot better BEFORE her diagnostic spinal tap and eventual steroid regimen in the hospital and now she has the sensation that her head is huge and is generally feeling like crap.


    Can any of you out there share a similar experience with a high-dose steroid regimen for MS? Other folks I've asked have said yes,the steroids made them feel awful and that a couple of weeks was needed to get back to normal. She is despondent and I need to help her any way I can. Thank you.

    #2
    Originally posted by Swataz View Post
    Other folks I've asked have said yes,the steroids made them feel awful and that a couple of weeks was needed to get back to normal. She is despondent and I need to help her any way I can. Thank you.
    Hello Swataz and welcome! Thank you for coming to us for the sake of your wife. I was given 5 days of Solu-Medrol IV almost 20 years ago for a nasty flare of optic neuritis. I was not given a taper down schedule. After the 5th day I was feeling horrible! I thought I was having a heart attack, I was filled with anxiety, was crying all the time and I couldn't sleep.

    In short, I found out I was having major panic attacks after seeing my pcp who prescribed valium to ease things up and calm me down. It took a day to kick in but helped. However, my vision did not return to near normal for about 6 weeks afterwards and is still somewhat compromised. This is my story - others have different experiences.

    I have opted to never have another IV treatment after this first time. I never wanted to go through that experience ever again. Nowadays, I hear that a taper down schedule is mostly used. I am sorry your wife is having a hard time and I can certainly empathize with her. It does take time to get back to normal.

    You might want to talk with her neuro or primary care doctor and let them know what's going on. In the meantime, be gentle with her - her body is going through a lot of stress. My husband did all the cooking, cleaning and laundry while I recuperated - lucky me!

    When she is feeling better, let her know we'd love to have her check in with us.
    Both of you take care and send her good thoughts from MSWorld
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator

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      #3
      My neuro told me today that high dose steroids were linked to necrodisvor decaying of the femur. Could happen on ur first dose or eleventh.
      The future depends on what you do today.- Gandhi

      Comment


        #4
        Hi Swataz, it's so great of you to reach out on behalf of your wife, she must be really special. Regarding the IV, I am unfamiliar with the dosage your wife is on. If the IV was 1,000 mg per infusion the 1,250 is even more.

        I've had the IV quite a few times, the last one was approx 2007 so things may have changed since then. My dosage was 1,000 mg IV for 5 days then an oral dose to taper off the med starting at around 5 pills of 80 mg and decreasing the dose until I'm down to 1 mg for a few days. I was told that 1,000 mg is a dangerously high dose to just stop so the oral taper was needed.

        Regardless, the entire IV/oral experience is nothing short of horrible. During the IV part, I can't sleep, have endless energy, anger easy (I'm normally such a mellow lady) and eat my face off. After the IV comes out I just crash for a few days, no high dose med to keep me awake plus all the false energy I wasted on the IV comes back to haunt me. Also I was warned to stay away from people that are sick with the flu, cold, etc. The high dose is meant to shut down your immune system (so it stops attacking and keep reducing inflammation). It just makes it very easy to catch something.

        I know it's hard to believe that when she feels this horrid things are improving but it may take a wee while for her to get through the side effects of the med. I used to say that the entire IV/oral treatment made me feel worse than my MS did but things really did improve. Only once out of approx 8 treatments did my affected body part not respond favourably, my left eye only sees light and shadows but it couldn't even see that much before the treatment.

        I wish the 2 of you well with this, please don't be shy here, there's so much great advice from all angles.

        Jen
        RRMS 2005, Copaxone since 2007
        "I hope to be the person my dog thinks I am."

        Comment


          #5
          Hi, I had four days of solu-medrol - the dosage was very high, followed by an oral taper. Sorry I don't have the exact amounts. I had it for optic neuritis where I completely lost the vision in one eye (the infusion helped).

          I did not have a horrible experience. However, I read up about how to possibly avoid bad side effects. I simply reduced sodium and sugar intake to nearly zero, unless it was natural in what I was eating. I also kept pretty low fat. I hydrated like I had the flu, and I rested as much as possible.

          The first day of steroids made me feel like a million bucks, but I guess that's because I was relapsing and they helped with inflammation and some stabbing neuritis pain in my eye also was relieved pretty quickly. The taper was ok - the hardest part was modifying my diet because I had read that salty food can make you feel terrible when you're on steroids, but that the urge to snack salty foods is indeed powerful.

          Wishing you and your wife the best.
          All the best, ~G

          Comment


            #6
            I did 3 days of high dose (1000mg/day) IV steroids for three days a year ago. The first infusion day I just slept; the second infusion day I got ALL my Christmas wrapping done in one afternoon! The third infusion day, I just felt crappy....and continued to feel crappy for about 5 weeks. I did no oral taper.

            I had none of the usual steroid side effects: no blood sugar issue, no swelling/water retention, no insomnia, no increased appetite, no mood swings. I just felt bad....like a low grade flu. Tired. achy, lack of appetite and wanted to stay in bed all the time, yet I continued to work full time.

            I had never had steroid infusions before, so I'm not sure how much they helped. Four months after my exacerbation, I left work on short term disability. I truly believe I would have had a better outcome if I had taken time off work to recover. Encourage your wife to take the time she needs to maximize her recovery!

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              #7
              Hi and welcome to the message boards. I have had several IV steroid infusions in the last 2 years. In January 2017, my neurologist gave me 5 days of steroids, 1000mg per dose. Then, my neuro prescribed a tapering dose of steroids for 3 or 5 days. I didn't have any problems with them. In February 2018, I had 3 days of the same stuff with 3 days of a taper. No problems.
              I am curious. Is your wife being treated by an MS specialist ? IMO you need to have an MS specialist to treat MS ! Good luck !

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                #8
                I can only speak for myself but I was in the hospital and had 5 days of high dose IV steroids. When they discharged me they refused to give me tapering steroids so I ended up calling my PCP and he sent something in for me. Stopping steroids cold turkey can be bad and I wasn't going to risk another trip to the hospital.

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                  #9
                  I have had IV steroids multiple times at home. The dosage was 1000mg though. Depending on flare, they were prescribed for either 3,4, or 5 days.

                  Insomnia was the biggest issue. I would get headaches, but from not sleeping. Then I would start to feel horrible. You can only go so far on an hour's sleep. So if she needs something to sleep, let the neuro know. That helped me.

                  I had the oral Prednisone taper the first time, but didn't tolerate it too well. So after that, no taper following IV steroids.

                  I hope your wife is feeling better. Thanks for looking out for her.
                  Kathy
                  DX 01/06, currently on Tysabri

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                    #10
                    I've only had steroids for a flare once, seven years ago. I had 3 days of 1000mg IV with no taper. I thought that tapers weren't done very often anymore, but with the other responses here maybe I'm mistaken. I'm the opposite of most people, steroids make me sleepy and sort of spacey. I was super careful to limit sugar and salt intake, and also took a few days of Zantac to prevent heartburn.

                    I have no real issues with IV steroids, but I cannot tolerate oral steroids at all. I did a 9 mg taper for something other than MS and it made me suicidal.

                    Sometimes steroids make MS symptoms better right away, but sometimes symptoms continue to get worse in spite of the steroids.
                    dx: RRMS 8/2010; rx: Tecfidera 2/2016; Copaxone 8/2010

                    Comment


                      #11
                      Steroid Taper

                      I had 5 days of 1000mg IV with 25 day taper. Physically I felt fine and my double vision and migraines cleared up in 2-3 days. Although I felt normal emotionally, my wife noticed that I was angered easily and not my usual cheery self. I believe the taper is important and you should question your doctor if it is not prescribed in case of a future event.

                      Good luck and a good year to you both!
                      Scott

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