How have you reacted to steriods?

[SueFern]

So I wanted to know how you guys feel when you are on steriods?  The reason I am asking is because back in Nov. when my doctor put me on them I felt awful when I first took them.  My muscles felt like lead and I felt very stiff and had to walk extremely slow.  I also swelled easily and my joints hurt.  The doctor said I would feel more energetic but I actually felt very fatigued.  I ended up taking less then he wanted me to and I slowly started to feel a little better where I could function.  Also, it didn't completely take away the numbness and tingling I was feeling.  It did make it less but it never went away.

I was reading a post on here the other day that steriods makes Lyme Disease worse so I started to do some research on it.  I am also remembering a really bad rash that I had on my Leg over two years ago that I thought was eczema and it was not reacting well to topical cortizon creams.  After 2-3months it slowly went away.

Also, while I was on the steriods I got a really bad sinus infection.  So I ended up going on an antibiotic and that is when I started feeling a little better.

I just got bloodwork done yesterday and my neuro is testing for Lymes with the Western Blot test.  I am just nervous that there are so many false negatives with these tests!

Also, when I told my neuro how I felt on the steriods she said how odd that was and normally people feel so much better and energetic.

Thanks for any input!

Susan

[SueFern]

Thanks for all of your input!  I completely feel for you guys when it comes to the heartburn because that was awful for me too!

Michelle - I am glad you are feelling so much better!!!  I hope it stays that way for awhile for you!

So I guess it was normal how I was feeling when I was on steroids from all of your comments.

I think I am trying to just find some answers to what is going on with me.  It is so sad that I am actually wishing I had Lyme's because it seems to be a better outcome then MS.

Susan

[rendean]

Susan,

I have had both type of reactions to steroids, energetic and horribly fatigued! The first 3 rounds I felt like I could take on the world and they effectively relieved the pain and fatigue of MS.

This last round this month was horrible. I felt worse, was cranky, irritable, moody and had NO pain relief to speak of ( one day of complete relief but a lightning of my usual pain). I don't think my family can stand another round of steroids, lol. I bit everybody's head with the slightest provacation, had zero appetite and muscle fatigue which I usually do not have.

Everyone I've talked to with mutiple steroid infusions says it differs everytime regarding pain relief , etc. It is a good therapy when indicated and the majority of people have a good overall experience despite the moodiness, etc.however there are exceptions to every rule.


Ren

[Sumanadevii]

I take two rounds of IVSM per month.  I do not do a taper pack.  Normally I have a slight water weight gain (5 lbs or so) that goes away in a week or two.  I don't sleep for about four or five nights and come here causing problems...lol...I feel relief from pain by the second day.

This past month I took three treatments and crashed and burned.  In other words, I felt a heck of a lot worse than better.  I am just now (two weeks later) beginning to feel better.  Why I reacted this way, I don't know.  I have an appointment with my neuro on Friday and will ask her.

Oh and did I mention, this time I was more than a "little" more emotional.  Anything set me to crying....and I mean anything...

[michelleric]

I just have had my 3rd round in the last 2 years of IV Solumedrol.  Tomorrow is my last day of the 2 week taper, and I can say I feel great!  The 1st week on the Solu-medrol, I felt SO much worse, and was so sorry I had them. Everything hurt, my glands swollen, IRRITABLE...

But...2 weeks later, I feel like the old me.  No more double vision, fatigue gone, gait better, lots of energy.  I saw neuro today, and she never saw me look so good.  I hope this continues for a long time.  She said it could last 8 weeks at least, I hope so.

She also told me soon I "might" not feel as good. Just a small warning I guess.

So far, I am glad I had them, and would gladly do it again, if I could be guaranteed such success with them.

Good luck to you,
Michelle

[figuerpa]

I am with Bob I slept fine while on the steroids, well the first day I only slept like 4 hours but after that I slept fine. Heartburn was ridiculous. I ended up with an inflammed stomach which wasn't fun. I also got thrush from them due to the supression of my immune system.

They did help with the pain I was having in my leg though, helping reduce the inflammation to help me deal with the pain is the best thing. I however, did not like the steroids but I am sure I will do them again if need be.

Take Care,
Paula

[COBOB]

High dose steroid suppress most of your  immune system.  They can also reduce inflammation, change the fluid balance of thr body and mess with other things.  Lyme's doesn't always get worse on steroids.   I had Lyme's back in 1977 when little was known about it.  I was diagnosed when they heard the symptoms and saw the ECM rash on my side.  They effectively treated my neurologic symptoms with steroids.

Some people react differently to steroids.  I feel fine but have the worst heartburn you can imagine.  Then again, I also sleep fine and many folks can't sleep well when they are on steroids.

Bob