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Does anyone NOT use steroids with any flare ups?

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Old 04-12-2008, 03:09 PM #1
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Default I can't use steriods...
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Originally Posted by beautytransforming View Post
I had gastric bypass. We are not supposed to do steroids. Not only that, I HATE steroids and their side effects. I have decided that with any possible future flare ups, I will not use steroids. The book I am reading (New hope and practical advice for ppl and families with MS) says that steroids do not help everytime, that after the first year or so, they lost their efficacy, and that they do not help with all lesion locations (mainly the ones with loss of balance, coordination and speech which is mainly where I have been afflicted).

I plan on using rest and alternative therapy (massage, may trying accupuncture and such) when/if I have a flare.

Anyone else NOT use steroids at all?

Thanks for all the advice, answers and warm welcome!!

...only as a last resort, which I haven't resorted too! I had hystoplasmosis in an eye many years ago and the steriod would cause a high risk of that being reactivated. So, basically I'm doing nothing so far.

Oh, and I had a lap band put in almost 2 years ago. How have you done on your weight loss?
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Old 04-12-2008, 03:59 PM #2
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I have RRMS and have taken oral prednisone with lots of unappealing side effects. I choose not to take them anymore during a flare - I won't say I'll never take them again but it would be a last resort if I did. To me the side effects of the steroids are worse than the symptoms of the flare.

I suppose steroids affect everyone differently.
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Old 04-12-2008, 04:09 PM #3
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Oh, and I had a lap band put in almost 2 years ago. How have you done on your weight loss?
I am down 145 pounds, have 5 to my goal, 20 to the ultimate, OMG, never imagined goal =) I am planning plastics for next year. I would do this every year if I had to! Best thing I ever did for myself!! How are you doing? I know the lap band is generally slower and harder, and takes the most will-power. I never had any.
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Old 04-12-2008, 06:26 PM #4
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I have used IVSM to treat the 21+ exacerbations I've had since my dx in early 2001. I have RRMS. I do not use oral pred, it makes me very sick.

There are about as many opinions about using steroids to treat an exacerbation as there are neurologists...

There are also alternatives to treating exacerbations. One size does not fit all! Some people do not tolerate IV steroids, some do not tolerate other tx...

From the National MS Society, here's some basic information:

http://www.nationalmssociety.org/abo...ons/index.aspx

Here's some alternative therapy:
http://www.nationalmssociety.org/abo...ine/index.aspx

Remember, knowledge is power.
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Old 04-12-2008, 06:46 PM #5
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I can't take steroids. My skin, especially my face turns beat red and I feel like I have a horrible sunburn and then in some places I peel. On steroids I am known as the "screaming red meanie". So, definately a no no for me.

I just do what I can do get over the exacerbations. The last time my ears were really affected, like a roaring ocean, was terrible. I let my PCP give me a shot of Predisone in the rear. Wasn't enough to really effect me bad and it helped GREATLY!
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Old 04-12-2008, 07:16 PM #6
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Quote:
Originally Posted by SurvivingMSwithHOPE View Post
I can't take steroids. My skin, especially my face turns beat red and I feel like I have a horrible sunburn and then in some places I peel. On steroids I am known as the "screaming red meanie". So, definately a no no for me.

I just do what I can do get over the exacerbations. The last time my ears were really affected, like a roaring ocean, was terrible. I let my PCP give me a shot of Predisone in the rear. Wasn't enough to really effect me bad and it helped GREATLY!
Hey Marcia

I get the red "moon" face too. I don't get the screaming meemies, I just sleep all the time. I have the opposite reaction that most people do. I am so lethargic that they really keep an eye on me, BP is low, etc. I have had thrush twice, and I get a horrible "steroid" headache, upset stomach, and the rash. I don't like them, but it's the only way I get out of an exacerbation.

Luckily, my exacerbation rate has slowed down in the past 2 years! Yeah!
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Old 04-12-2008, 07:36 PM #7
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Originally Posted by Av8rgirl View Post
Hey Marcia

I get the red "moon" face too. I don't get the screaming meemies, I just sleep all the time. I have the opposite reaction that most people do. I am so lethargic that they really keep an eye on me, BP is low, etc. I have had thrush twice, and I get a horrible "steroid" headache, upset stomach, and the rash. I don't like them, but it's the only way I get out of an exacerbation.

Luckily, my exacerbation rate has slowed down in the past 2 years! Yeah!
Gosh Cheryl, I am just the opposite. I do get the headache. My blood pressure hits the roof as does my "mood"

If I was to call my daughter and say Hey, I need you to come stay a week, I'm getting steroid therapy, she would hang up on me and hire someone to do it!!
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Old 04-12-2008, 07:48 PM #8
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I can't take steroids anymore because of an eye problem, so I have been getting IVIG for my exacerbations. I like them better, no side effects except a headache. Steroids turn me into a wild woman( No sleep,boundless energy,thrush,Gerd). I'm happy I can't use them anymore. Lately I've just been riding out my flares, seems to work for me!!
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Old 04-12-2008, 06:49 PM #9
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21+ exacerbations

21+ !!!!! I will never whine again!!
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Old 04-12-2008, 07:12 PM #10
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Quote:
Originally Posted by SurvivingMSwithHOPE View Post
21+ !!!!! I will never whine again!!
I totally expect everyone to whine! What will I do with all this Cheese!!!!


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