steroids for relapses

Beginner's Guide to MS: Solumedrol, It's All The Rage!!

Lisa Emrich Health Guide November 21, 2008
  • If you have multiple sclerosis, it just might be possible that you’ve also experienced the dreaded IVSM.  IVSM = Intravenous Solumedrol, a treatment which involves really high doses of glucocorticoid steroids, specifically Methylprednisolone.Solumedrol, a potent anti-inflammatory steroid, ...

53 Comments
  • Anonymous
    JimINRadfordVA
    Dec. 16, 2013

    I've taken this ride three times. While taking it, and the oral prednisone taper, everything tasted like cardboard. I actually lost about 30 lbs. 

     

    My blood sugar went crazy and I had to take insulin injections. Frown

     

    The only respite I had was from puffed mints (pillow mints?). I went through 2 buckets a week.

  • Matheus Cavalieri
    Nov. 02, 2013

    I'm LoL,coz i use solumedrol all months in cicle of 3, and im really the cookie monster and Monster of Energy!

    All the 10 symptoms are perfectly explicited in article.

    Well done!

    Matheus Cavalieri . Brazil

    2 years with Ms RR

  • gerry
    Sep. 06, 2011

    My biggest complaint with this med is HICCUPS.  Last time, they started within MOMENTS of starting the drip, lasted almost non-stop until the end of the dose. - then sporadically all week 5 (+/-) days of hiccups!

    The metallic taste (also immediate) was bothersome, but tolerable.

    I was impressed by the whole DIY-IV-at home thing.  The strides we've...

    RHMLucky777

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    My biggest complaint with this med is HICCUPS.  Last time, they started within MOMENTS of starting the drip, lasted almost non-stop until the end of the dose. - then sporadically all week 5 (+/-) days of hiccups!

    The metallic taste (also immediate) was bothersome, but tolerable.

    I was impressed by the whole DIY-IV-at home thing.  The strides we've made- while maybe not pleasurable-ARE impressive!

    • Lisa Emrich
      Health Guide
      Sep. 06, 2011

      Hi Gerry,

       

      I'd not heard of hiccups as a side-effect.  Very interesting.  Hopefully you won't have to have many rounds of solumedrol in the future.  I haven't yet administered my own steroids at home, but I've seen the supplies which others receive for it.  Very neat idea to be able to take care of that independently.

       

      Take care,...

      RHMLucky777

      Read More

      Hi Gerry,

       

      I'd not heard of hiccups as a side-effect.  Very interesting.  Hopefully you won't have to have many rounds of solumedrol in the future.  I haven't yet administered my own steroids at home, but I've seen the supplies which others receive for it.  Very neat idea to be able to take care of that independently.

       

      Take care,

      Lisa

       

    • kennajo1
      Aug. 24, 2014

      I have found that eating a spoonful of peanut butter immediately gets rid of hiccups and they don't come back.  Maybe that will help?

    • Lisa Emrich
      Health Guide
      Aug. 24, 2014

      kenna,

      Thanks for the suggestion.  Will have to try that next time hiccups attack.

  • Alicia
    Apr. 15, 2010

    Jan 7, 2010 was my first ever symptom of MS.  I woke up with a numb right foot, the next day I was numb in the crotch area and up to both knees, the 3rd day I was numb up to my bottom.  I went to the hospital panicked, 5 doctors couldn't figure out what was wrong.  I went to a neuro about a week later. He scheduled a brain MRI and a ver &...

    RHMLucky777

    Read More

    Jan 7, 2010 was my first ever symptom of MS.  I woke up with a numb right foot, the next day I was numb in the crotch area and up to both knees, the 3rd day I was numb up to my bottom.  I went to the hospital panicked, 5 doctors couldn't figure out what was wrong.  I went to a neuro about a week later. He scheduled a brain MRI and a ver & Baer test.  By mid February I was diagnosed with MS. I am 32. My "flare up" lasted 2 months. My symptoms went 90% away for only 2 weeks, and came back worse.  Now I'm numb from the waist down and so are both hands. I've become forgetful and very tired, which is very hard since I have 3 small kids!

       I'm scheduled to start Solumedrol on Monday for 5 days, and then Avonex the next week. I am also taking Baclofen, a muscle relaxer.  I have always hated taking medicine and now I'm taking what feels like a lot.  Does anyone else take Baclofen? I've been on it 1 week now and the stiffness is still there, but now I seem to have lost my balance even more and falling down more. I'm really nervous now about the Solumedrol after reading all of the comments, but better prepared.  I'll have candy waiting for me!

    Alicia

    • Lisa Emrich
      Health Guide
      Apr. 15, 2010

      Hi Alicia,

       

      Welcome to HealthCentral.  I'm sorry to welcome you to the "MS club" but there are some extraordinary people in the group.  Your diagnosis came relatively quickly which is good.  I hope that the IVSM will work well for you.  I can usually start to tell by the 3rd day that improvements may be occurring. 

       

      But...

      RHMLucky777

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      Hi Alicia,

       

      Welcome to HealthCentral.  I'm sorry to welcome you to the "MS club" but there are some extraordinary people in the group.  Your diagnosis came relatively quickly which is good.  I hope that the IVSM will work well for you.  I can usually start to tell by the 3rd day that improvements may be occurring. 

       

      But to be honest, it seems that (with me anyways) that the symptoms which have been around longer before I finally do the steroids take longer to subside.  Be patient with yourself and try to get extra support at home.

       

      Re: Baclofen.  I've used it before, actually for about two years regularly.  I don't need it right now, but it really worked when I did need it.  We started my dose so small that it took a week or so (increasing the dose every 3 days) before I started to notice a real difference.

       

      Good luck with the steroids, and please let us know how you are doing.  Many of us have been right where you are now.  You don't have to feel alone in this.  :)

    • Alicia
      Apr. 16, 2010

      thank you for your positive comments, and support.  I so need it right now!

  • kathyG
    Mar. 25, 2010

    I have not had to be on the IV steroids since my original diagnosis which was a nightmare. Never fun but the horrible hosptital doctor made it a million times worse. I spent months depressed and freaked out. Needless to say short of an alien abduction I did notice much. Well here I am gain back with my first relapse. This time I am noticing the side effects!...

    RHMLucky777

    Read More

    I have not had to be on the IV steroids since my original diagnosis which was a nightmare. Never fun but the horrible hosptital doctor made it a million times worse. I spent months depressed and freaked out. Needless to say short of an alien abduction I did notice much. Well here I am gain back with my first relapse. This time I am noticing the side effects! No one discussed much so I was very worried about this horrible headache. I googled and poof there was your post! Thank God. I don't need to worry about something more horrible going on in my brain than what already is. I prefer a sideeffect to my brain deteriating even faster. I really really really appreciate your post. I feel a much much better. Now they just have to get on curing this !!!

    Hugs

    Kathy

    • Lisa Emrich
      Health Guide
      Mar. 25, 2010

      Hi Kathy,

      Sorry you are having another relapse and need to do the steroids.  But I'm glad that have found information letting you know about some of the common side-effects.  Just keep in mind that this too shall pass soon enough.  Hang in there!

    • kathyG
      Mar. 25, 2010

      Thank you. This will pass by monday. I run a cat rescue and I have a feral colony to trap on monday. Sat. headache or not I have to go offer our help and convince a woman feeding strays to let us trap them all to be spayed/neutered. MS is a pain in the butt but I have a life goal. I see horrible things every day with animals and MS or not it needs to be fixed....

      RHMLucky777

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      Thank you. This will pass by monday. I run a cat rescue and I have a feral colony to trap on monday. Sat. headache or not I have to go offer our help and convince a woman feeding strays to let us trap them all to be spayed/neutered. MS is a pain in the butt but I have a life goal. I see horrible things every day with animals and MS or not it needs to be fixed. Doing nothing is worse than doing it with MS.  : )

      Kathy

  • Anonymous
    Carol
    Feb. 09, 2010

    I am new to all this. Diagnoised about 3 mo ago with MS-Primary/Progressive. I am about to do the Solu-Medrol for 2 days this weekend. Reading all the comments made me a little scared. I am very medicine resistant. My Neuro is new to this and has given me all kinds of drugs that didn't work for one reason or another with side effects. I work full time...

    RHMLucky777

    Read More

    I am new to all this. Diagnoised about 3 mo ago with MS-Primary/Progressive. I am about to do the Solu-Medrol for 2 days this weekend. Reading all the comments made me a little scared. I am very medicine resistant. My Neuro is new to this and has given me all kinds of drugs that didn't work for one reason or another with side effects. I work full time and have to be on my game most of the time. I did a 4 day IV-steroid a couple of months ago with no big side effects. Never ate my head off or got that burst of energy that everyone raves about. Did have headaches. No trouble sleeping. Then a month later did the oral pack of coming down off the steroid. I have trouble walking and my balance is awful.  Get very fatiqued and have been a real homebody. Sometimes I feel like a guinnie (sp) pig. I worried that I won't be able to work after this IV.My daughter has relapsing/remitting MS. Her Dr. questioned why my Dr. was giving me steroids for my type of MS.  Is this a good thing?

    To do it or not?

    • Lisa Emrich
      Health Guide
      Feb. 09, 2010

      Hi Carol,

       

      Welcome.  In reading your story, I do have some thoughts.  You mention doing the IV steroids a few months ago without great side-effects.  That's great news!  There is no reason to believe that this time would be much different.  Each person's body is unique.  (of course, I'm assuming that your neurologist had...

      RHMLucky777

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      Hi Carol,

       

      Welcome.  In reading your story, I do have some thoughts.  You mention doing the IV steroids a few months ago without great side-effects.  That's great news!  There is no reason to believe that this time would be much different.  Each person's body is unique.  (of course, I'm assuming that your neurologist had ordered 1000mg of solumedrol per day.)

       

      It is very important to have a neurologist who is well-versed in multiple sclerosis.  It sounds as if your current neuro is new to MS but that your daughter's neuro might be a specialist?  I highly recommend that you do seek the advice of an MS specialist.

       

      The treatment options are rather limited (or ineffectual) when it comes to primary progressive MS.  More often than not, solumedrol is used to speed up the end of relapses which are the hallmark of relapsing-remitting MS. 

       

      What has been going on lately that your neurologist has prescibed 2-days of solumedrol?

    • Anonymous
      carol
      Feb. 09, 2010

      Wow, I already got a reply. Thanks.  I am having my doubts about this Dr. He doesn't communicate his reasons for doing things too well.  He did say that he heard that IV steroids given say once a month for 3 times seemed to help some patients.  I should have done this one the first of the month but things kept happening and I couldn't do it until...

      RHMLucky777

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      Wow, I already got a reply. Thanks.  I am having my doubts about this Dr. He doesn't communicate his reasons for doing things too well.  He did say that he heard that IV steroids given say once a month for 3 times seemed to help some patients.  I should have done this one the first of the month but things kept happening and I couldn't do it until this weekend.  It is 1000 mg, whereas last time was 750 mg. I am at work, so not sure what the name of the previous med was. Might be different. This Dr. is fresh out of residency and he is only 35. Red flag. I am meeting with him this Monday after the treatment so we will see what he says.  I agree with you, I need to go to someone more specialized.  Maybe I should go to my daughter's Dr.  I am single and don't have a big support group. I can't depend on my daughter, because she has little kids and doesn't drive.  I need to join the MS association here locally. 

      I have warned everyone here at work that I am going to be really crabby the next few weeks.  I have just now told people that I have MS here at work.  Thank you so much for responding to me. I'm new to this. I'll get the hang of it soon and not write books when I respond.

    • Lisa Emrich
      Health Guide
      Feb. 09, 2010

      Ah, a doctor right out of residency.  That might be a good thing if he is excited about learning the latest and greatest thoughts on MS treatment.  But a 2nd opinion is often a good idea.

       

      When I was being diagnosed, I went to a neurology clinic and saw the first available doctor.  He was the one who dx MS.  Then within a few months...

      RHMLucky777

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      Ah, a doctor right out of residency.  That might be a good thing if he is excited about learning the latest and greatest thoughts on MS treatment.  But a 2nd opinion is often a good idea.

       

      When I was being diagnosed, I went to a neurology clinic and saw the first available doctor.  He was the one who dx MS.  Then within a few months I switched to the MS specialist within the same clinic.  It was not really a big deal in my case.

       

      If you would like to get more response from the community here (since I only received noticed of your first comment because I had written this post), you can Create A Sharepost.  You would need to register but that's not a big deal.  There are many very kind and knowledgeable folks here.

       

      I hope that the steroids work well for you.  Yes, it is a somewhat common treatment to get a 1-day monthly Solumedrol infusion.  Especially for folks who are needing lots of steroids during the year away (from relapses) and for those folks who are experiencing a worsening of their MS.  Perhaps this will help you.

    • Anonymous
      Carol
      Feb. 09, 2010

      Lisa, thank you so much for your advice and encoragement. I will register next week for the shareposts.

  • Anonymous
    Living With MS ...
    Dec. 12, 2009

    Hello.  I have been taking pulse steroids / solumedrol for my MS for the past 3 years....500 mgs - 3x every 7 weeks.  I am taking 2400 mg of calcium daily w/ vit D to keep my bone density up.  I am curious as I just read about how the body does not absorb calcium as well the longer you are on roids?  Would an Osteporosis med help keep up...

    RHMLucky777

    Read More

    Hello.  I have been taking pulse steroids / solumedrol for my MS for the past 3 years....500 mgs - 3x every 7 weeks.  I am taking 2400 mg of calcium daily w/ vit D to keep my bone density up.  I am curious as I just read about how the body does not absorb calcium as well the longer you are on roids?  Would an Osteporosis med help keep up bone strength?  Any thoughts on this?

    • Lisa Emrich
      Health Guide
      Dec. 12, 2009

      Hi,

       

      I hope that the pulse steroids has been working well for you.  Calcium and Vitamin D is certainly importantly for bone health.  But also, magnesium is just as important to aid in the absorption of calcium.  In general, one should have caclium and magnesium in a 2:1 or 3:1 ratio.  Here's a good article on the topic - http://barttersite.org/magnesium-calcium-and-osteoporosis/...

      Read More

      Hi,

       

      I hope that the pulse steroids has been working well for you.  Calcium and Vitamin D is certainly importantly for bone health.  But also, magnesium is just as important to aid in the absorption of calcium.  In general, one should have caclium and magnesium in a 2:1 or 3:1 ratio.  Here's a good article on the topic - http://barttersite.org/magnesium-calcium-and-osteoporosis/

       

      Also having MS we should get our Vitamin D levels tested.  If low, it is important to supplement a significant level.  Personally, I've been taking 4000UL of over-the-counter Vitamin D daily and 50,000UL of prescription Vitamin D every other week.

       

      I don't know much about the osteoporosis drugs and can't really say much about their appropriateness.  That would be something to ask your doctor.  Since steroids do work pretty well to weaken our bone density, it is important to do what we need to in order to protect them.

       

       

    • Anonymous
      Living With MS ...
      Dec. 16, 2009

      LIsa,

       

      Thanks so much for the reply.  I will investigate the use of Magnesium to augment my Calcium & Vitamin D.  Since I have your ear / eye, I thought I would pose a different question re:MS symptoms / treatment.  I have rather significant cognitive issues from my MS.  I am currently taking 20 mg of Ritalin at 6A, 1030A &...

      RHMLucky777

      Read More

      LIsa,

       

      Thanks so much for the reply.  I will investigate the use of Magnesium to augment my Calcium & Vitamin D.  Since I have your ear / eye, I thought I would pose a different question re:MS symptoms / treatment.  I have rather significant cognitive issues from my MS.  I am currently taking 20 mg of Ritalin at 6A, 1030A & 3P with a remarkable ammount of success.  The Ritalin burns off the fog that would normally occlude me from having 2+2 = 4. 

       

      My question to you is why no one is taslking about this use of ADHD stims to get around this particular symptom that is the main cause of folks w/ MS to go out on disability?  The NMSS used to reccomend either Cylert or Ritalin as a treament for this.  When Cylert got pulled from the market in 2005, I shifted from Cylert (I took from '96 - '05) to Ritalin.  My neuro in '96 was the NMSS Chief Medical Officer / Dr. Aaron Miller.  When Cylert got pulled, they removed both meds from the white paper talking about ways to treat MS related cognitive fatigue. 

       

      Any thoughts on this?  If you are interested, I have an absolute plethora of articles talking about the use of ADHD stims for cognitive fatigue that I can share with you.  Please let me know. 

    • Lisa Emrich
      Health Guide
      Dec. 16, 2009

      Hi,

       

      Many months ago, I wrote a couple of posts on the topic of fatigue (but not separating cognitive from physical fatigue).  You can find them here -

      How to Manage MS-Related Fatigue and Taking Provigil for MS-Related Fatigue.

       

      I do mention Ritalin but not other ADHD drugs.  I wonder if patients are also using other drugs such as Concerta? ...

      RHMLucky777

      Read More

      Hi,

       

      Many months ago, I wrote a couple of posts on the topic of fatigue (but not separating cognitive from physical fatigue).  You can find them here -

      How to Manage MS-Related Fatigue and Taking Provigil for MS-Related Fatigue.

       

      I do mention Ritalin but not other ADHD drugs.  I wonder if patients are also using other drugs such as Concerta?  It would be great if you could leave a comment on that original post and link (or provide information about) those articles you have regarding ADHD stimulant drugs in the use of fatigue (cognitive and physical).  The more information we have where folks might find it, the better.

    • Anonymous
      Lori
      Dec. 22, 2009

      This is the best info I could find...hands on experiences of the IV...

      I just recently went to the emergency room...couldnt walk correctly...legs, torso were numb.  Toes on right side paralyzed....some movement of toes on the left...just a little.  Eyes alternating black spots over the vision

      They admitted me and tested me with a 21/2 hour MRI and...

      RHMLucky777

      Read More

      This is the best info I could find...hands on experiences of the IV...

      I just recently went to the emergency room...couldnt walk correctly...legs, torso were numb.  Toes on right side paralyzed....some movement of toes on the left...just a little.  Eyes alternating black spots over the vision

      They admitted me and tested me with a 21/2 hour MRI and said that it was an MS episode (didnt know anything about this stuff)

      Had five days of the IV and went home to four kids and hubby.  The left side regained strength before leaving hospital....the right side no longer left numb  but the toes were still paralyzed and I was over coming drop foot.

       

      I went home without taper meds and was told there would be no side effects to the steroids.  Looked puffy that left after a few days.  Its been a weak of irrational crying and being so angry.  Very weak...leg getting better every day....balance better.

       

      If the fatique part of the MS or the treatment aftermath?

      How long before the meds leave the system...someone on here said they felt fatique for three weeks...its been a week and a half for me.  My toes now move...but they are still recovering strength and more flexibility...drop foot left but still gaining strength to bend/move my ankle it up farther.  I can see clearly...one eye still experiencing the spot coming and going especially with fatique.

      Lori

    • Lisa Emrich
      Health Guide
      Dec. 22, 2009

      Hi Lori,

       

      Wow, you've had a really tough couple of weeks.  The mental shock of a diagnosis and then the physical shock of 5-days of IV Solumedrol.  But it's absolutely wonderful that you've seen so much improvement after the steroids and a little bit of time. 

       

      The steroid treatment is a certainly a tough one, but very necessary for...

      RHMLucky777

      Read More

      Hi Lori,

       

      Wow, you've had a really tough couple of weeks.  The mental shock of a diagnosis and then the physical shock of 5-days of IV Solumedrol.  But it's absolutely wonderful that you've seen so much improvement after the steroids and a little bit of time. 

       

      The steroid treatment is a certainly a tough one, but very necessary for major relapses.  It's a bit shocking that you didn't get a steroid taper afterwards as that seems very harsh on the body, but not everybody does get one (depends upon neurologist) nor wants one.

       

      Fatigue can be part of MS itself, but it is most likely that the fatigue you are experiencing right now is part of the sudden shift in steroid levels in your body.  There's a rebound effect which just takes time to overcome.

       

      I am one of those who says that I'm really tired and taken out of commission for about three weeks with Solumedrol treatments.  Please let your family take care of as much as possible around the house and allow you to give your body what it needs right now.......REST!!!!

       

    • Anonymous
      Lori
      Dec. 22, 2009

      Thank you for responding to me...that helps.  I just have another week and half to recover from the steroids? 

      How did your strength come back in the past after the treatments....was it gradually of three weeks or just at the end of the three weeks it just reappeared?

       

      I am so thankful that I can walk again etc....just need the little bit of...

      RHMLucky777

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      Thank you for responding to me...that helps.  I just have another week and half to recover from the steroids? 

      How did your strength come back in the past after the treatments....was it gradually of three weeks or just at the end of the three weeks it just reappeared?

       

      I am so thankful that I can walk again etc....just need the little bit of mumbness to leave my big toe and a couple toes next to it and some of my calf.  Been swimming for therapy at the gym.  The cool water seemd to revive me and my body.

       

      I want my life back....need to do laundry and take care of my home...the tree is sitting there partially decorated on the lower half bythe littlest kids in the house. 

      I am going back to teaching kindergarten after the New Year..is that enough time traditionally to get over the treatments?  I need energy to even get up and move around....just need to sleep. 

       

       

      It was good to figure out that the steriods were what was making me cry and get so angry...that was a bit over the edge....didnt know what to think about myself and my outlook on life and behavior.  Normally I am a clean freak...so thought I was just acting extra weird.  My skin even smells a little odd still. The house is piled with laundry and the living room is a mess.....just thought I was overreacting to mess.   

       

       

      Thanks so much, Lori

       

       

       

       

       

    • Lisa Emrich
      Health Guide
      Dec. 22, 2009

      "I want my life back..."

       

      Oh Lori, I know what you mean!!  For me, overcoming the fatigue and gaining strength was a gradual process.  I just know that I did better if I didn't try to put any demands upon my limited about of energy for at least 3 weeks.  Seriously, only doing what I was capable of and then crashing as necessary....but I...

      RHMLucky777

      Read More

      "I want my life back..."

       

      Oh Lori, I know what you mean!!  For me, overcoming the fatigue and gaining strength was a gradual process.  I just know that I did better if I didn't try to put any demands upon my limited about of energy for at least 3 weeks.  Seriously, only doing what I was capable of and then crashing as necessary....but I also don't have kids to take care of.

       

      Are any of your children, or even your husband, capable of helping you with chores around the house?  Even if it is just carrying laundry from one place to another, helping with folding, and taking clean laundry to each of their bedrooms.

       

      Aren't Christmas trees the most beautiful when little ones have decorated them?  (hopefully I'm making you smile)

       

      One of the hardest things I have learned since developing MS is that I had to realize that my normal sense of perfection would be impossible any longer and that "good enough" truly is pretty darn good.  Letting loose on some things was a tough lesson, but very necessary.

       

      It is wonderful that you have regained so much abilities.  Walking, swimming, vision, etc.  The numbness will probably take longer to resolve.  You might even have some little bit of numbness which sticks around.  Sometimes symptoms resolve quickly with the steroids, sometimes after weeks or months, sometimes not completely. 

       

      Regaining function is the most important benefit.  Believe it or not, numbness is actually easy to forgot that it's even there after awhile.

       

      I don't know what to recommend about going back to work.  I imagine that Kindergarteners require lots of energy.  Try to be easy on yourself and ask for help.

       

      Hope you have a great holiday.  Oh, and welcome to MS Central.

    • Anonymous
      Lori
      Dec. 22, 2009

      Lisa,

      Thanks again for the encouragment and the smile. 

      The kids and my husband are able to help with some basics such as dishes and some laundry...but it honestly wasnt meeting my standards...I am like super mom/do it all/solve it all.....I'm going to use this to make me a more patient and appreciative mom and wife and a more compassionate person to other...

      RHMLucky777

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      Lisa,

      Thanks again for the encouragment and the smile. 

      The kids and my husband are able to help with some basics such as dishes and some laundry...but it honestly wasnt meeting my standards...I am like super mom/do it all/solve it all.....I'm going to use this to make me a more patient and appreciative mom and wife and a more compassionate person to other people's physical and emotional and spiritual needs.

       

      I watch people walk and I am at awe that people just walk and take it for granted...thats a luxury I never ever thought that I would have to fight to regain....trying to move my right toe and not being to remember how without moving my left toe first is something I know made me more appreciative of movement.

       

      Yes...its so great that I can swim....I am so thankful. Here is a funny story: 

      Four days after getting out of the hospital I signed up for the gym and went swimming.

       

      I was doing laps like all was well...that is awesome....I was trying to keep up with a college swim team swimmer in the next lap lane....I did so good doing several laps doing different strokes.  I was walking back and forth in the water moving my right leg and doing therapy for movement restoration.  After about thirty minutes...I got out of the pool and made it to the bathroom with a slight limp and just peed myself right there in a professional facility on the floor...

      how is that for laughter?  It made me laugh after it was cleaned up with paper towels as discretely as I could and I was changed and in the car with my husband who was driving me....I just laughed and laughed.

       

      From super mom to peeing on the floor...

      This is a lot to handle....the whole thing emotionally can be a bit too much. 

      Rest, rest, rest.  Let go of the perfectionism...all is well.

       

      Thanks,
      Lori

  • Anonymous
    Robert
    Jul. 15, 2009

    Hi Lisa! Thanks for all the wonderful information and for sharing your experiences with the world. This is a difficult battle and it's always helpful to get feedback from folks who've 'been there'.

     

    I just finished my IVSM, this time for a flare up affecting my right hand/arm/shoulder/neck from a lesion on the spine. The doctors and home nurses don't...

    RHMLucky777

    Read More

    Hi Lisa! Thanks for all the wonderful information and for sharing your experiences with the world. This is a difficult battle and it's always helpful to get feedback from folks who've 'been there'.

     

    I just finished my IVSM, this time for a flare up affecting my right hand/arm/shoulder/neck from a lesion on the spine. The doctors and home nurses don't exactly provide the information one would seek regarding how long one should expect to have to wait to see positive results, and how long to potentially experience side effects.

     

    I was informed today (by the gal at my neurologist's office) that the IVSM could take two weeks to see any results - this is good to know before I get worried that it's not doing anything. What I'm having trouble finding is how long the side effects of the IVSM can be expected to stick around. I'm still foggy and tired on the third day following my last of a three-day treatment.

     

    Typically, do the side effects stick around for a week? A month? Any feedback would be greatly appreciated. Thanks again for the information!

    • Lisa Emrich
      Health Guide
      Jul. 15, 2009

      Hi Robert,

       

      So sorry that you had a relapse but hope that you see improvements soon.  For me, undergoing the IVSM and following oral taper is a 3-week event, during which time I am extremely fatigued and not active in regular life.  I recently did the steroids in June and just now beginning to regain some energy.

       

      Try to be patient with...

      RHMLucky777

      Read More

      Hi Robert,

       

      So sorry that you had a relapse but hope that you see improvements soon.  For me, undergoing the IVSM and following oral taper is a 3-week event, during which time I am extremely fatigued and not active in regular life.  I recently did the steroids in June and just now beginning to regain some energy.

       

      Try to be patient with yourself and get lots of rest.  Let others take care of you as much as possible and let your body heal.  It's easier to say than do, but necessary.  Good luck.

  • Joan
    May. 15, 2009

    Thanks, Lisa, for this information.  My neuro is still thinking that he wants me to start IV therapy and I've printed this out for my file.

  • Anonymous
    Melissa Peterson
    May. 06, 2009

    I am currently on my 2nd round of this lovely stuff. I agree, it is like PMS in a bag. I was diagnosed with MS in 2000. I was on Avonex for 8 years, but last December, my Neuro. switched me to Copaxone. I had a really bad excacerbation in Aug. 08 and was out for a little over 5 weeks. That was my first time going on the IV drug. It is a rough drug, but in the...

    RHMLucky777

    Read More

    I am currently on my 2nd round of this lovely stuff. I agree, it is like PMS in a bag. I was diagnosed with MS in 2000. I was on Avonex for 8 years, but last December, my Neuro. switched me to Copaxone. I had a really bad excacerbation in Aug. 08 and was out for a little over 5 weeks. That was my first time going on the IV drug. It is a rough drug, but in the end it helped. I go today for my 3rd treatment. One thing that I have found that helps with the metallic taste is chocolate milk. I sip slowly on it when they hook my line up. These are the worse attacks that I have had in almost 9 yrs. of this disease. I know of others that have had it alot worse- so I try to stay positive. It could have been worse- they first thought that I had a brain tumor and I was told it would be in-operable. When I get down, I try to think of that. Hang in there, I know some of the treatment sucks.

     

    Take Care,

    Melissa Peterson

    • Lisa Emrich
      Health Guide
      May. 06, 2009

      Melissa,

       

      Thank you for the chocolate milk suggestion.  I've personally used the Jolly Ranchers or LifeSaver mints.  I wonder if chocolate soy milk works as well.

       

      I hope that this round of Solumedrol goes more smoothly for you.  Just knowing what to expect has helped me cope with it better.  And I hope that Copaxone works for...

      RHMLucky777

      Read More

      Melissa,

       

      Thank you for the chocolate milk suggestion.  I've personally used the Jolly Ranchers or LifeSaver mints.  I wonder if chocolate soy milk works as well.

       

      I hope that this round of Solumedrol goes more smoothly for you.  Just knowing what to expect has helped me cope with it better.  And I hope that Copaxone works for you.  It is the drug I use and seems to be doing a good job.

       

      Now get some rest.

    • Melissa
      May. 06, 2009

       

      Lisa, thanks. It is good to talk to others about all of our experiences. It's hard to explain to people that can't sometimes see a "visual" of what we experience. From what my nurse at the infusion clinic has told me, the chocolate itself masks the bitterness. I'm sure the chocolate soy would be just as good. I usually get the Nestle Quik chocolate milk...

      RHMLucky777

      Read More

       

      Lisa, thanks. It is good to talk to others about all of our experiences. It's hard to explain to people that can't sometimes see a "visual" of what we experience. From what my nurse at the infusion clinic has told me, the chocolate itself masks the bitterness. I'm sure the chocolate soy would be just as good. I usually get the Nestle Quik chocolate milk in the bottle, like I had as a kid. You take care and hope you co well.

      Thanks for chatting with me,

      Melissa

  • Anonymous
    Jughead
    Dec. 10, 2008

    I feel slighted, I never got to go in anywhere to get my IV, I have always done them at home.  The nurse comes to the house, puts the plug in, then I'm responsible for flushing it out, hooking up a new bag, and opening my own Doritos!  I've taken so much of this stuff over the years, they think it has caused a couple of bulging disks in my back. ...

    RHMLucky777

    Read More

    I feel slighted, I never got to go in anywhere to get my IV, I have always done them at home.  The nurse comes to the house, puts the plug in, then I'm responsible for flushing it out, hooking up a new bag, and opening my own Doritos!  I've taken so much of this stuff over the years, they think it has caused a couple of bulging disks in my back.  I suppose I should be happy that the bone density tests always come back good.

    • Anonymous
      Johnny
      Dec. 15, 2008

      I'm a nurse with MS so I don't mind infusing myself, in fact I prefer infusing at home for a couple of reasons. I don't have to drive to the clinic. I pick the exact time I'm ready to infuse. I can get comfortable in bed or on the couch with a blanket or pillows and just relax. This relaxed atomosphere helps me get in touch with the benefits of why I'm infusing...

      RHMLucky777

      Read More

      I'm a nurse with MS so I don't mind infusing myself, in fact I prefer infusing at home for a couple of reasons. I don't have to drive to the clinic. I pick the exact time I'm ready to infuse. I can get comfortable in bed or on the couch with a blanket or pillows and just relax. This relaxed atomosphere helps me get in touch with the benefits of why I'm infusing this drug in to my body. It may sound funny, but when that metal taste comes I get a mental picture in my head. I see the medication entering every lesion, calming them down. After the infusion I can lay back and relax even more. Just resting and letting the drug do it's thing. All of this really helps me make the best of it. Johnny

    • Lisa Emrich
      Health Guide
      Dec. 15, 2008

      Hi Johnny, you make it sound like such a Zen experience. Smile

       

      Are you able to get the IV started on yourself?  If so, I'm sincerely impressed.

       

      I wouldn't mind flushing the line and all that stuff.  But I'm fortunate, my neurologist's office is only about 10 minutes from my house.  And if you look at my response to Jughead (just left...

      RHMLucky777

      Read More

      Hi Johnny, you make it sound like such a Zen experience. Smile

       

      Are you able to get the IV started on yourself?  If so, I'm sincerely impressed.

       

      I wouldn't mind flushing the line and all that stuff.  But I'm fortunate, my neurologist's office is only about 10 minutes from my house.  And if you look at my response to Jughead (just left it), I am usually already at the neuro's office when the call for IVSM is made.  Very convenient.

       

      Sounds like you've gone the routine down.  Thanks for your comment.

    • Anonymous
      Johnny
      Dec. 15, 2008

      Hi Lynn,

      A one handed IV start would be something.  No, I leave that to the real professionals.

      Actually I try the Zen thing to keep me from bouncing off the ceiling from the drug rush. Sealed  Just finished my third gram yesterday so I'm still holding on to the anticipated good outcome in a week or so when I usually get the positive results of...

      RHMLucky777

      Read More

      Hi Lynn,

      A one handed IV start would be something.  No, I leave that to the real professionals.

      Actually I try the Zen thing to keep me from bouncing off the ceiling from the drug rush. Sealed  Just finished my third gram yesterday so I'm still holding on to the anticipated good outcome in a week or so when I usually get the positive results of feeling better.

    • Lisa Emrich
      Health Guide
      Dec. 15, 2008

      Hey Jughead,

       

      Good to see you here (sorry it took so long for me to answer - off topic, I finally have heat at home, yippee).

       

      It's funny.  This is what usually happens when I've got to do the IVSM.  I call the MS nurse and she asks, "how are you?  so what's up?"  Then I describe what had been brewing for a week or so. ...

      RHMLucky777

      Read More

      Hey Jughead,

       

      Good to see you here (sorry it took so long for me to answer - off topic, I finally have heat at home, yippee).

       

      It's funny.  This is what usually happens when I've got to do the IVSM.  I call the MS nurse and she asks, "how are you?  so what's up?"  Then I describe what had been brewing for a week or so.  After much more discussion, she says, "well, I think you need to come in and be seen."  Me - yeah, that's what I thought.

       

      Then I get an appointment for the next morning.  See the neurologist or his assistant who says, "well.... I think we need to do a round of steroids.  Do you have any place to be right now?"  Me - nope, I even brought the book cause I just KNEW you were going to say that.  Then I walk down the hall to the infusion center and get started.

       

      See..."they" never let me leave (lol) before juicing me up.  I've never been offered the choice of doing it at home.  Smile

  • Lauren
    Dec. 09, 2008

    I could not have written this post better myself!  Everything you wrote sounds just like what I experience when on my 5-day dose.  As far as being hungry, I always try to find something "semi" healthy to eat that will curb my appetite so that I don't eat & eat because that, combined with the indegestion that the medicine sometime causes, will...

    RHMLucky777

    Read More

    I could not have written this post better myself!  Everything you wrote sounds just like what I experience when on my 5-day dose.  As far as being hungry, I always try to find something "semi" healthy to eat that will curb my appetite so that I don't eat & eat because that, combined with the indegestion that the medicine sometime causes, will make my stomach upset.  When the 5th day is over & it's time to come off, watch out!  It is like I am in the peak stages of a drug rehab or something!  I imagine it must be similar to that since my body is wondering where the Solumedrol is!  I do take the Medrol Dose Pack, & it helps.  Also, since the Solumedrol gives me a surge of energy while in the 5-days, I always crash the 6th or 7th day once the medicine is over.  I've just accepted that & expect it each time, so if I don't crash it's not a bad thing but if I didn't expect it & did crash, it can ruin a weekend, etc.  Also, I try to drink a lot of orange juice since it has the citrus taste which is not bad with the metal taste, plus it can possible help with the immune system issue that Solumedrol causes.  I really enjoyed reading this post!  Thanks!  Smile

    • Lisa Emrich
      Health Guide
      Dec. 15, 2008

      I'm so glad that you enjoyed the post Lauren.  Thank You!!

  • Anonymous
    Tracey
    Nov. 27, 2008

    I have had solumedral several times - with no bad side effects - only good results - makes me stronger and better coordinated. I take it every 3 ore 4 months

  • Julie
    Nov. 24, 2008

    I've done the solumedrol treatment twice, once IV and the second time orally. The IV version didn't go well for me since I also have tiny veins and when the nurse tried to reset the IV on the fourth day, she poked me repeatedly, blowing out veins until I was crying and she was frazzled. We agreed to give up.

    The second time, I declined the IV drip, my neurologist...

    RHMLucky777

    Read More

    I've done the solumedrol treatment twice, once IV and the second time orally. The IV version didn't go well for me since I also have tiny veins and when the nurse tried to reset the IV on the fourth day, she poked me repeatedly, blowing out veins until I was crying and she was frazzled. We agreed to give up.

    The second time, I declined the IV drip, my neurologist was very concerned so she told me that I could try it orally, which is not too commonly done. Of course, it doesn't absorb as well vs the bloodstream, but it was better than not doing anything. It took a special order thru the pharmacy and then the pharmacist showed me how to mix it with a syringe. I mixed it into cranberry juice because it was sort of like drinking battery acid -- not recommended for weak stomachs -- and then sipped slowed over an hour.

    For me, this is much more preferable than the IV method and if I ever need this intervention again, this is the route I will take.

    Anyone hear of downsides to doing it this way?

    • Lisa Emrich
      Health Guide
      Nov. 24, 2008

      Julie,

       

      I've done the IV route three times so far and one time with all oral Prednisone (mentioned above in a comment).  Personally, the oral prednisone was very difficult but that's probably due to the steroid of choice at the time and not the method of use.

       

      I've never heard of mixing Solumedrol into a drink and taking it that way. ...

      RHMLucky777

      Read More

      Julie,

       

      I've done the IV route three times so far and one time with all oral Prednisone (mentioned above in a comment).  Personally, the oral prednisone was very difficult but that's probably due to the steroid of choice at the time and not the method of use.

       

      I've never heard of mixing Solumedrol into a drink and taking it that way.  I have heard of injecting it into muscles however.  Did you experience the other steroid related side-effects?  I'm curious.

       

      So sorry that the nurse didn't get a good line in on the first day which latest throughout the round of treatment.  I've always babied the IV line so that wouldn't happen, but I know that it does happen to other folks cause the nurse always praises me when we make it to the end with only one needle. 

       

      It's nice to learn that there are other options for folks.  There's also another drug which can be self-injected into the muscles, Acthar Gel.  But with a drastic price increase last year, the 2 vials which it takes to complete the round can cost $50,000.  Insane!!!

       

      Thanks for educating me a little.  Laughing

  • Anonymous
    Anonymous
    Nov. 22, 2008

    Ahhh yes, the five day IV.  I didn't get the "dirty metal" taste in my mouth until about day three.  I always came prepared with a double chocolate donut and an iced cappuccino to fight the yuckies!

     

    My five day IV was followed by an oral taper.  I can't say for sure when these things happened, but I remember hearing things, quite distinctly,...

    RHMLucky777

    Read More

    Ahhh yes, the five day IV.  I didn't get the "dirty metal" taste in my mouth until about day three.  I always came prepared with a double chocolate donut and an iced cappuccino to fight the yuckies!

     

    My five day IV was followed by an oral taper.  I can't say for sure when these things happened, but I remember hearing things, quite distinctly, that weren't actually happening:  running water, the crinkling of grocery bags.

     

    I also had a very short fuse, compared with my now longggg fuse!

     

    Emily

    • Lisa Emrich
      Health Guide
      Nov. 24, 2008

      Hi Emily,

       

      It's funny that you mention sounds.  Occasionally, sounds drive me crazy.  What will be a teeny-tiny, nobody-else-can-hear-it sound is so loud that I want to strangle the source.  Good thing that folks around me understand the situation and just calmly let me be.

       

      But you know what, I think that the double chocolate donut...

      RHMLucky777

      Read More

      Hi Emily,

       

      It's funny that you mention sounds.  Occasionally, sounds drive me crazy.  What will be a teeny-tiny, nobody-else-can-hear-it sound is so loud that I want to strangle the source.  Good thing that folks around me understand the situation and just calmly let me be.

       

      But you know what, I think that the double chocolate donut and cappuccino should be regular treatments for many different things.  Hmmmm, now I think I need some chocolate.

  • Anonymous
    TheQueen
    Nov. 22, 2008

    During one stay in the hospital there was a solumedrol shortage and instead they used an IV steriod that started with a D. Heaven. You'd only get 100mg of it instead of 1000, and there were NO side effects. I simultaneously laughed and cried on the solumedrol, with this D stuff I could have hosted a tea party in my hospital room.

    • Lisa Emrich
      Health Guide
      Nov. 22, 2008

      Hiya Queen,

       

      I think this must have been dexamethasone (aka Decadron).  Although I've never used it intravenously, I have used the oral form during the oral taper.  It is so much easier on my system than Prednisone.

       

      Kinda funny.  My neurologist is surprised because he says that more people do better with Prednisone and not as well...

      RHMLucky777

      Read More

      Hiya Queen,

       

      I think this must have been dexamethasone (aka Decadron).  Although I've never used it intravenously, I have used the oral form during the oral taper.  It is so much easier on my system than Prednisone.

       

      Kinda funny.  My neurologist is surprised because he says that more people do better with Prednisone and not as well with Decadron.  I reserve the right to be different.  Tongue out

       

      I do know that oral Decadron is about 5x stronger than oral Prednisone.  Maybe you got off easy with a lower dose (lol, as if any of these dosages could be considered lower) and only had half strength infusion.

       

      In any case, you know what to ask for next time if necessary.  I'll have to ask my neuro about the difference in the IV solutions sometime.  I'd much rather be hosting tea parties than emotional rollercoasters.

    • Anonymous
      TheQueen
      Nov. 22, 2008

      Ahhh... that WAS it. I recall asking the nurse why I was only getting 100, not 1000, and she did say it was stronger than Solumedrol. Plus, I got hit four times a day with the Solumedrol, only three with the D. I had no idea there was an alternative to Prednisone, I will ask for that next time.

  • Candy lee
    Nov. 21, 2008

    Boy,

     

    It sounds as if you are in my body when I am taking  IVSM. I wold like to add one other thing that happens to me. On my 2nd or 3rd day the nurses at my IV hospital, have a fan for me, I turn red as a beet  in my face and on my neck and stay that way until the day after my last IV. It's not painful, it's just that I feel like I look...

    RHMLucky777

    Read More

    Boy,

     

    It sounds as if you are in my body when I am taking  IVSM. I wold like to add one other thing that happens to me. On my 2nd or 3rd day the nurses at my IV hospital, have a fan for me, I turn red as a beet  in my face and on my neck and stay that way until the day after my last IV. It's not painful, it's just that I feel like I look like Rudolph's red noseCool

     

    Candy

    • Lisa Emrich
      Health Guide
      Nov. 22, 2008

      Hi Candy,

       

      It's so validating to know that others experience many of the same things.  I don't think that my face gets red, but I do know that we watch my bloodpressure closely during infusions. 

       

      In fact, I usually get a little cold sitting there for so long.  Last time around the nurse brought me the heating pad to place under the...

      RHMLucky777

      Read More

      Hi Candy,

       

      It's so validating to know that others experience many of the same things.  I don't think that my face gets red, but I do know that we watch my bloodpressure closely during infusions. 

       

      In fact, I usually get a little cold sitting there for so long.  Last time around the nurse brought me the heating pad to place under the blanket.  Aw, that was nice.

       

      Thanks for reading and commenting. I appreciate it.

  • Erin
    Nov. 21, 2008

    Can it really be a smooth ride?  "Roid Rage", heart pounding, lack of sleep which increases the roid rage, and food.  Oh, the food.  Sealed Someone needs to video tape me while I'm eating so I can see it later.  That way I'll learn to slow down!

     

    Your tips are great for me to remember for the next round, which I'm afraid to say is probably...

    RHMLucky777

    Read More

    Can it really be a smooth ride?  "Roid Rage", heart pounding, lack of sleep which increases the roid rage, and food.  Oh, the food.  Sealed Someone needs to video tape me while I'm eating so I can see it later.  That way I'll learn to slow down!

     

    Your tips are great for me to remember for the next round, which I'm afraid to say is probably going to be real soon. 

    • Lisa Emrich
      Health Guide
      Nov. 22, 2008

      Abby,

       

      I'm so sorry to hear that you might be on the juice again soon.  But good for you for getting into the MS Clinic.  I have high hopes that you'll get the attention and treatment you deserve.  Inattentive doctors - Aargh!!

       

      The first time I did steroids, it was oral Prednisone - 1000mg for 3 days plus taper.  I would NEVER...

      RHMLucky777

      Read More

      Abby,

       

      I'm so sorry to hear that you might be on the juice again soon.  But good for you for getting into the MS Clinic.  I have high hopes that you'll get the attention and treatment you deserve.  Inattentive doctors - Aargh!!

       

      The first time I did steroids, it was oral Prednisone - 1000mg for 3 days plus taper.  I would NEVER recommend that to anyone.  It was a horrible, horrible, bad, bad experience.

       

      Five years later when I did my first round of IVSM with Prednisone taper, it was really not very pleasant.  I was out basically for three weeks before I really could start to function again.  Prednisone = bad. 

       

      But afterwards I thought to myself, "Ok, if I only have to do that every five years, then I suppose I can handle it."  Haha.  Six months later, back on the drip.  This time with a Decadron taper.  Ah, much better.

       

      Knowing what to expect helps me the most.  Knowing that I'm going to be a blob who can't sleep or think makes dealing with it easier.  The most recent round I did was before Spring break.  This was good timing since it's the first week after the IVSM that I'm my worst.

       

      Again, knowing what to expect makes the ride somewhat smoother.  Good luck with the new doctor.

       

      Lisa

    • Anonymous
      jeff
      Oct. 20, 2009

      Laughing I am scheduled for my fourth session  of infuiom therapy, although  I give  daily copaxone injections ,is there a stronger  preventive drug  out there,short of infusion?

    • Lisa Emrich
      Health Guide
      Oct. 20, 2009

      Hi Jeff,

       

      There are several disease-modifying drugs available now which are self-injections and have roughly the same efficacy rate: copaxone, betaseron, rebif, avonex.  There are infusions which include Tysabri or Novantrone (for worsening MS).  And some patients respond better to drugs such as Imuran, Cytoxan, methotrexate, etc.

       

      Choosing...

      RHMLucky777

      Read More

      Hi Jeff,

       

      There are several disease-modifying drugs available now which are self-injections and have roughly the same efficacy rate: copaxone, betaseron, rebif, avonex.  There are infusions which include Tysabri or Novantrone (for worsening MS).  And some patients respond better to drugs such as Imuran, Cytoxan, methotrexate, etc.

       

      Choosing an MS drug is sometimes an experiment because our bodies respond differently to the ones available.  This is something which you should definitely discuss with your own neurologist because he/she knows your situation.

       

      Good luck and I hope that the rest of your Solumedrol infusions this go-around are smooth.