How often do We use steroids?

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Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/20/2008 1:00 PM (GMT -6)   
From my understanding of their latest findings (which of course might be wrong), since steroids can have such ill effects on the heart and other things, and at the same time, not alter the diseases course. I've been told to try and not use them unless the vision is affected. Then you are to get in and gitterdone.
 
I have had 3 different steroidal times. In the beginning of huge attack i did 3 days of iv type steroid. (vision improved greatly) lower body swoll from it--edema.
 
Then about a month later (im guessing same attack) i had to do 1 iv sitting as outpatient. It helped but not for long.
 
Last time i had steroids it was the one that begins with a D? and was a shot in the hip ...it actually seemed to do better than what the second round was like. I went home and everything eased and the attack finally ended.
 
That was 3 yrs ago. I haven't had steroids since then. Do other's use these more frequently and if so, what do you feel are your markers or reasons for opting for them. Do you remain at  home during most and go for steroids when severe? Or do you go for all, or get steroids to take at home?
 
I am curious because as we post we find that different people from different states and countries, with different doctors all do it (do i dare use the word again) differently? (i dared)
 
Id like to know as maybe im not doing it as much as i should. They warned me not to overuse them but perhaps im underusing them? I really dont know.
 
Again, this is just like the , how do i stay clean post....something i wonder about and its good to hear how others handle these things.
 
Anything i ever ask, i do understand if someone doesn't want to answer. Everyone feels certain things are (and alot are) private. If you dont mind sharing though, id truly appreciate it.
 
 
 
thanks
 
kiera
Every day brings us closer to what we reach for .........in all things.
 
Kiera


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 1/20/2008 1:33 PM (GMT -6)   
I haven't used steroids in years. But then, I haven't HAD to use steroids in years.  Since starting on the Betaseron about 15 years ago, I have only  had on exacerbation, and that subsided on it's own in about 2 weeks.
 
At the time, the neuro I saw said that he was no longer prescribing steroids for every attack. Only for those that dramatically affected a person's ability to "perform Activities of Daily Living"": feeding, bathing, dressing, toileting, bowel and bladder continence, getting in and out of a chair, household and community activities such as meal preparation, doing laundery, grocery shopping, managing money, making telephone calls, doing light work, getting around outside, going places that are beyond walking (or wheelchairing) distance..  Note I said DRAMATICALLY affecting one's ability to do those things.  Sometimes it was a matter of "wait and see; if things dont improve in a couple of days, then we'll consider steroids.."
 
I think what happens is that a lot of newly diagnosed people think that somehow, if/when the MS "goes into remission", that they'll feel COMPLETELY normal for awhile. That they'll not experience ANY residual stuff..numbness, tingling, loss of strength, spasticity, all those "usual" MS symptoms. When in fact it's been MY experience that most people with MS experience at least SOME of those things, in varying intensities, ALL of the time.  It's a matter of "re-defining normal".  "Normal" will NEVER be what it was like before you got MS.  "Normal" can ONLY be your "best good day"..when, while you experience some symptoms, they're not so onerous that you can't go about your daily activities, modified perhaps by an afternoon nap, or by doing things a bit differently, or by postponing the more physical activities for awhile, until you feel better.
 
When I was first diagnosed I was feeling like, "I gotta do SOMETHING!!!" so I was on the phone all the time to the neuro. Of course this was long before any of the disease modifying drugs, or even the newer steroid treatments, so it meant hospitalization, and ACTH intraveneously, and lots of expense, of both $$ and energy.  Then when I finally came to grips with the fact that I was ALWAYS going to experience some disability, then it was a matter of..."If I can't pee by myself..time to call the doctor." or "can't move my leg at all", or "my left arm seems to not want to grip things.." or...any of those things that really affected my "ADL's" (activities of daily living).  And almost ALWAYS for visiion things, as that's the one area where the steroids do indeed seem to have some benefit.
 
So...you really need to talk with your doctor.  Find out when HE thinks you should call..and sometimes, it's really just a call to "report" that you're in a flare, and not really a request for intervention.  But you and he need to work that out to your comfort, and satisfaction.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3538
   Posted 1/20/2008 3:35 PM (GMT -6)   

This is a great thread.  This should garner some good experiencial information.  My doctor said basically what Uppitycats said.  Don't use them unless you are really uncomfortable or if your activities of daily living are affected.  I have only used them once.  I am fairly newly diagnosed.  I had two big flares that were to be my diagnostic flares.  No one knew that it was MS so no steroids.  Last spring I had a big flare and called my doc.  My doc is actually an hour and a half away so we do a lot by phone and e-mail.  She ordered the solumedrol for five days.  I had the infusions at home.  My side effects were sleeplessness, horrendous heart burn, and sort of general anxiety.  I did not think the steroids did that much for me.  My doc thinks they did shorten the discomfort. 

I felt better after about six weeks.  It took another 8 weeks before I could tell what residual symptoms I would be stuck with.  It was a miserable experience.  I was in agony with spasticity and had to add pain relievers to the mix.  I also did physical therapy to get me back on track.  I missed a couple weeks of work and returned with a pronounced limp that took some time to go away. I had botox to relieve some very specific spasticity in my left leg that was causing the limp and toeing in. 

That is my only experience with steroids.  My doc only orders the IV type.  She feels it is for comfort only.  She believes that whatever disability that the flare is going to cause is not controlled or affected by the steroids.  She is perfectly ok with me NOT doing steroids.  I had a minor flare in November lasting about 4 weeks for which I had no treatment.

If and when I flare like that big one last spring, I would ask for the steroids again.  I only want them if I am in pain, having visions problems or if my activities of daily living are a problem.  I have not been "normal" since well before diagnosis and agree with Uppitycats, normal is definitely redefined with MS.  I am definitely in remitting right now but have constant symptoms that are my new normal.

Love and prayers,


Gretchen       co-moderator MS board       diagnosed with MS July 2006


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/20/2008 5:00 PM (GMT -6)   
I have residual but thankfully thus far its mild. Tingling in hands, things falling asleep, fatigue and some bowel problems are residual but i feel great during these times. No wonder, when they are compared to the other times. I say normal because i dont mind the numbness (as it hasnt yet prevented my walking altogether) or do i mind the fatigue until its a full attack with it involved. So it becomes normal for me. My definition of my normal as you point out is not like i was before MS. Before MS no tingles, no numbness, no fatigue.

So, i really dont think that ive ever thought that i was like i was before. I do feel brandnew during the remissions though. Brand new because of what ive just came through was so poor of a condition, that being able to shop, get groceries, wash my hair and go see a friend or attending church: stops. When it leaves i can resume these activities with a cramp or two here and there, and the other things i mentioned above.

So i guess ive accepted my residual's as my norm for now. For now because each episode can bring new things and leave new things behind. I guess adjusting to what my Normal is, will be an ongoing thing.

I agree with you that those who are new to this may have that impression. I certainly hope that my explanation here clears up any thought that i return to totally Ms free type of life. I dont.

I do love it when it remits though, who doesn't? Thankfully the residuals for me have been thus far the more mild ones. Headaches are just now beginning to be in the picture in episode but once out, they didnt remain behind. (thank God) ..of course i know that they can come back......


My normal is My normal. I guess that would go for everyone's idea of how they define normal. It also goes with i have ms, ms doesnt have me.
So yes, i continually redefine what my normal is.
thanks
kiera


Every day brings us closer to what we reach for .........in all things.
 
Kiera


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 1/20/2008 5:17 PM (GMT -6)   

Yes, Kiera, you've identified what for me was probably the most frustrating part of this disease: just when I thought I "had it figured out", another flare would come along with different symptoms, or different intensities of symptoms, and I'd have to factor those in to what I'd considered "normal", all over again.

Somebody was grousing at me (not here, but in "real life") that they had suffered a disability, and now they were "like me".  I assured them that..while they did have a disability (they'd fallen off a roof, dislocated and damaged their shoulder)...we were different in that

they, once they completed healing and physical therapy, would KNOW...from day to day, month to month, year to year...what their disability was going to be. And that, over time, while their shoulder may weaken some, it was ONLY going to be their shoulder that was impaired, and they'd figure out what they could do and couldn't do, and that wouldn't change much.

Whereas for ME, I really didn't know, day to day, what I'd be able to do..or not do. And wouldn't know, in the midst of a flare, what it would be like once the flare (or exacerbation) cleared up.  Would I return to what it was like before the flare? Would I have increased disability? would other stuff come up? etc....

So yes indeed, it's forever moving "normal"...forever having to re-focus and relearn and move in a different direction.  Frustrating for sure.


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/20/2008 5:45 PM (GMT -6)   
Wow, i tried explaining this to a brother of mine. He has a compression fracture (gasp) ok, i shouldn't make fun and yes it can cause alot of pain but like your person with the roof, he at least knows what he's dealing with, where it's coming from and what to do about it. He can even opt out for pain relief and have no disability. But no, to hear him tell it , he's forever ruined......

needless to say, i stopped telling him about me. For one he didn't ask much, for another all id get back was how bad his fracture was.

The awareness of MS has greatly excelled, but i feel it needs to be even moreso as far as to explain it the way we have right here. That it changes. That montel changes, that clay aitken changes, etc....they simply dont inject and are ok.

Frustrating for certain and i can see how it might be odd for you...for us to say the inspiration part. Because even after all youve come through, its not like MS has said ok, i give up, ill leave her alone now. (i wish it would)

So we remain in this boat that doesn't usually sink all the way but gets knocks, pounds, tossed to and fro, bailing water out as we go and not baring the heat beating down upon us...wow i think ill write a book lol (a little jest there)..but we keep going.

My own doctor said that he will not tell me the neurontin amount as he will put me in next time . Ha well i guess he missed his chance! I did call and his nurse returned the call and we did report all that was going on . I didnt turn myself in (my way of saying it) though. I have done so many of these flares at home that ive decided when the blurred vision is there that is when i head out. Maybe to come back with steroids or to stay in for them. I wont chance my eyes though, nor should anyone. Alot of this other has really struck me odd. I kept seeing severe ms written on my forms but degree of disability isnt visible. Its more the daily activity thing ...not walking, i can. not standing, i can...but performing tasks during these episodes such as laundry etc i cant. but..i dont want that many steroids that often. So im trying to slow down on the good days and not "recycle" back into the flares. Remember ? we kind of touched on this before.

Hopefully that will provide a little more relief for me. I am now pacing myself but feel great today other than a lil eye throb (not full blown on), and some tingle schmingles.
I wanted so bad to do alot but i decided to fold some towels, phone a few friends and just really relax. Its the weekend anyway.

Sometimes i wonder if people (the ones who dont) knew what we went through. If they felt it for just 1 week, one of our larger flares, how they'd react once it was lifted up? ...toward us...?...maybe theyd run away or maybe theyd then understand. Guess we will never know that !


thanks

kiera
Every day brings us closer to what we reach for .........in all things.
 
Kiera

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