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Have you been on Solumedrol -? Looking for some advice please

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    Have you been on Solumedrol -? Looking for some advice please

    It's been awhile since I was here. Apologies if this has been posted in the past, but I did a search and couldn't find anything here. I had a flare up at the beginning of August - ended up going to my PCP, since I couldn't get into see our local MS specialist for almost a month.

    He gave me 10 days of oral steroids that did nothing. I traveled to Cleveland, OH last week (4 hr. trip - I used to live there) where I saw my neurologist/physiatrist there. They prescribed received three days of Solumedrol IV and have been prescribed an initial dose of Baclofen (10 mg/tid) for spasticity - which has become severe in my right arm and leg. (Spasticity is a new experience for me, it sucks!) The docs did tell me that I've progressed to SPMS (dx'd in 1995 with RRMS initially treated with Betaseron and then Copaxone without too much success. (When I moved to Cleveland, they placed me on Tysabri for 5 years, which I think slowed down the progression, until I became JCV positive). After day 3, on the steroids, I feel somewhat improved - fighting the urge to eat everything in site and am a bit "puffy" and feeling a bit mean/aggressive/cranky. Know these are side effects, have had in the past.

    However, I'm feeling "wiped" out - slept all day yesterday and not feeling much better from being rather sleepy today - when I was on the steroids I had difficulty sleeping and felt sick to my stomach - those are clearing up, but am surprised that I'm not "feeling better". It's been a couple of years since I've received these, so just asking if anyone else has had this type of experience with them, or how much time I should give them before I start feeling "better".

    I know that everyone responds differently, but would appreciate input from others that have been through this. Just didn't want to contact my doc's if I just need to be patient for a bit longer....

    Thanks much!

    Sparticle
    Don't worry about the world coming to an end today.
    It's already tomorrow in Australia" - Charles Schultz

    #2
    awful

    I detested my behavior, my sleeping patterns, my incessant talking, making dinner at 4 am..... when I was on Solumedrol. I did not expect that at all.... Dr and nurses were clear that I was on a STRONG steroid, but I did not know what that would mean.

    Barry Bonds was on TV at the time saying he did not know he was on steroids. OH MYYYYYYY. Either lying or a massively different experience than I had.

    Did make the optic neuritis go away, and I could see again.. but WOW.... I had to stay away from my classroom b/c my behavior was so incredibly frantic it was embarrassing.

    karen
    You are in the driver's seat, but God is holding the map

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      #3
      I have no experience with oral steroids or Solumedrol IV, so can't help you there.

      But I am familiar with Baclofen. You are on a 'starting' dose (10 mg/tid) which is good. I was started on 20 mg/tid . Since it is a muscle relaxer it will make you sleepy. Luckily I was prepared for that. As I recall it took about a month to adjust to the Baclofen.
      It has worked well for my spasticity, and my current neuro has left it up to me how much and when to take it - up to 80 mg/day. I have been taking it for so long that the sleepiness doesn't bother me anymore. Or at least not enough to keep me from doing whatever I have to do.

      Hope you start feeling better soon .

      Comment


        #4
        Hi Sparticle,

        but am surprised that I'm not "feeling better".
        Not feeling better from the exacerbation or the side effects of the steroids?

        May I ask what symptoms you are on steroids for? Some exacerbations don't require steroids and steroids won't always help.

        I'm feeling "wiped" out - slept all day yesterday and not feeling much better from being rather sleepy today - when I was on the steroids I had difficulty sleeping and felt sick to my stomach
        Fatigue from MS can cause what you are experiencing --- being wiped out and tired. You could ask your Neurologist about a medication for fatigue. Just a FYI --- Baclofen can cause an increase of fatigue, I finally had to get off of Baclofen for two reasons, my fatigue continued to increase and Baclofen wasn't helping.

        Take care
        Diagnosed 1984
        “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

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          #5
          Thanks all for your speedy replies!

          detested my behavior, my sleeping patterns, my incessant talking, making dinner at 4 am..... when I was on Solumedrol. I did not expect that at all.... Dr and nurses were clear that I was on a STRONG steroid, but I did not know what that would mean.

          Barry Bonds was on TV at the time saying he did not know he was on steroids. OH MYYYYYYY. Either lying or a massively different experience than I had.

          Did make the optic neuritis go away, and I could see again.. but WOW.... I had to stay away from my classroom b/c my behavior was so incredibly frantic it was embarrassing.

          karen
          Karen - you're not kidding!!!!! I had to go to an event this afternoon, people were taking their time signing up and I was muttering under my breath for them to hurry up - I'm generally a very calm, patient person who doesn't swear! I got sweaty and shaky standing and finally had to sit down because I felt like I was going to pass out. Fortunately, I live close, but driving was also a bit scary. Fortunately, I'm off work on Monday's - I work for a vet as a CSR, which is stressful at best, I'm hoping I feel better on Tuesday - or it's going to be a very long day if I'm still feeling like I do currently.

          But I am familiar with Baclofen. You are on a 'starting' dose (10 mg/tid) which is good. I was started on 20 mg/tid . Since it is a muscle relaxer it will make you sleepy. Luckily I was prepared for that. As I recall it took about a month to adjust to the Baclofen.
          It has worked well for my spasticity, and my current neuro has left it up to me how much and when to take it - up to 80 mg/day
          msgijo - thanks for your info on Baclofen, my neuro did tell me that the Baclofen would initially make me sleepy, so I guess that's part of the reason I'm so tired. I've had problems/generally suffer from MS related fatigue (have for about 4 years now) and take 200mg of Provigil on days I have to work to help; sometimes I have to supplement another 100 mg mid-afternoon. I took 200mg earlier today, as I had a late afternoon event I had to attend, it seemed to help, but as I mentioned to Karen above, I got very lightheaded, sweaty and a bit wobbly and had to sit down....I'm hoping that's not a Baclofen side effect. I've noticed it helps a bit, and does seem to help with some of my bladder issues (neurogenic bladder). My neuro did tell me it was a "starter" dose and we might want to "tinker" with it once I got "used" to it. If it doesn't work, (fingers crossed it does), then the next step will be Botox injections.

          Not feeling better from the exacerbation or the side effects of the steroids?

          May I ask what symptoms you are on steroids for? Some exacerbations don't require steroids and steroids won't always help.
          Fatigue from MS can cause what you are experiencing --- being wiped out and tired. You could ask your Neurologist about a medication for fatigue. Just a FYI --- Baclofen can cause an increase of fatigue, I finally had to get off of Baclofen for two reasons, my fatigue continued to increase and Baclofen wasn't helping.
          Snoopy, they put me on steroids for double vision, numbness on the right side of my face/spasticity in my right arm and leg - I've never experienced spasticity on this level - I had to drive 4 hours to my neuro's office and even with cruise control I couldn't feel my leg by the time I reached his office. Last time this occurred (2015), I didn't "act" soon enough, and ended up in the hospital for 3 days and then in a rehab facility for a month re-learning how to walk.

          I'm sure the stress of driving up and driving back, along with being told that my MS is progressing along with the addition of Baclofen are contributing factors to my exhaustion. As I mentioned above, I have been on Provigil for a number of years, as a rule that helps me with my MS fatigue, I took 200mg earlier in the day because I had to attend an event this afternoon, it helped somewhat, but I had to leave early because I started to get very sweaty/shaky and felt very short tempered which isn't like me. I'm blaming these side effects of the steroids.

          I'm sorry to hear that Baclofen didn't help you, I tried it ten years ago (I have neurogenic bladder secondary to MS) and it didn't seem to do much for it, but it was given to me by my urologist, who only had me taking 10mg/day. The 30 mg. has seemed to help with that aspect, (I am hoping that its the Baclofen and not the steroid effect - as I mentioned above, my neuro said he wanted me to let him know in a couple weeks how I was doing/it's working - if needed he said we could "tinker" a bit with the dosing. I'm hopeful that I can manage my spasticity with meds vs. Botox, which my neuro said would be the next step if Baclofen doesn't work. I'm sure my insurance will fight getting that approved~!


          Again, I appreciate everyone's speedy responses, I guess I should have put this under the "medications" topic - its been awhile since I've been here, things have changed, so I'm glad I heard back from you all.

          Thanks again!
          Sparaticle
          Don't worry about the world coming to an end today.
          It's already tomorrow in Australia" - Charles Schultz

          Comment


            #6
            As for me, every time I take IV steroids for a flare it takes about 2 wks. before I start feeling a little better.

            I hope you feel better soon.
            God Bless Us All

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              #7
              wow !!!!!!!

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