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Post Solumedrol Infusions :(

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    Post Solumedrol Infusions :(

    I felt amazing in hospital with Solu Medrol infusions (apparently very high doses of 12 infusions over 3 days) Came home and the down hill slope has started. This is a first steroid trip for me and I am having horrible pain at night while sleeping. Pain radiating from spine into ribs, tightness of chest and throat, pain in feet, hands, hips. I am so miserable. Doing a taper for 30 days now. Any idea if I will feel better soon??????? My legs are numb, I am swollen, tummyaches, thirsty.....and sad trying to come to terms with the diagnosis as it was made final 1 week ago. Any ideas thoughts?????

    #2
    Whenever I do steroids, I feel great the first few days but then the side effects of the 'roids set in.

    The effects of the steriods aren't always immediate since it depends on your body responding, decreasing inflammation and how that helps lessen the symptoms. I've found that some symptoms go away faster than others but overall, once I get through the whole ordeal, I've always has relief!

    But, I'm cranky, thirsty, restless, sleepless, starving... etc. My neuro will prescribe a sleep aid so you may want to think about that.

    I try to drink fluids like crazy, eat healthy even when I just want ice cream and try to get some exercise. The steroids make me very bloated which makes me feel gross. The problem is I'm always in steroids because of a flare so my mobility is decreased or hindered in some way! But, a nice walk with my husband and the dogs really makes me feel better.

    Some people here have such awful side effects from steroids they'd rather not take them. For me, I've seen how well they work for me in the end so its worth it. Its hard your first time because you do not know what to expect.

    It will get better as you come down on the taper. Take it easy and stay positive. you have a diagnosis now so you're taking steps to helping yourself get well!
    Symptoms Oct 2009, Dx Feb 2010. betaseron 2/10-2/12. Copaxone 3/12- present.

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      #3
      Thanks Cranberry, I needed that positive reinforcement

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        #4
        I'm sorry you're having a rough time, lisa. Your experience reminds me of my own 13 years ago with my first steroid IV within days of getting my dx. It was like adding "insult to injury" - I didn't know anything about MS, was partially blind and SCARED and my neuro didn't suggest anything except Solumedrol. I had an IV for 5 days and was not given any advice on treating the side affects. I too felt great during the treatments, but afterwards I felt like I was going insane and had major panic attacks.

        I can't remember any bodily pain, except in my eyes. My pcp gave me prescriptions for anti-anxiety meds as well as strong sleep meds and I waited it out - or rather slept it out!!

        The worst part is that I was not given any taper down!! So, the wait out period was agony. This was the first and last treatment I ever had, refusing it thereafter thru the years. I am glad at least that the taper down is common now, or so I hear. Many people report good results, so don't take my experience as anything but my own.

        It's hard enough to get a dx, I know... and I'm so sorry that your experience is harsh. Just remember that "this too shall pass" - hard to realize at this point in your treatment, but it will!! Please keep your chin up, take baths to relax, breath deeply, and call your pcp to get some meds to help you!!
        1st sx '89 Dx '99 w/RRMS - SP since 2010
        Administrator Message Boards/Moderator

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          #5
          I had a problem the first time I took steroids also. I started having tightness in my chest and shortness breathe. After a complete cardiological work up, including a heart cath, a CT scan revealed fluid in my lungs. According to my Cardiologist because of the steroids I was retaining fluids causing the build up.

          I have to say the steroids did help with the pain and my other sx's were gone. So, I have to agree with Cranberry. The end result was worth everything I went thru. I would do it again but this time I would know what to expect.
          Dx'd 4/1/11. First symptoms in 2001. Avonex 4/11, Copaxone 5/12, Tecfidera 4/13 Gilenya 4/14-10/14 Currently on no DMT's, Started Aubagio 9/21/15. Back on Avonex 10/15

          It's hard to beat a person that never gives up.
          Babe Ruth

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