Does anyone NOT use steroids with any flare ups?
 

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!!

beautytransforming, I have had 6 exacerbations (relapse, flare-up, attack). The first 2 exacerbations I used oral prednisone - that and ACTH were the only options at that time.

The last 4 exacerbation I have waited out and just treat symptoms if needed.

There are some who have relapsing/remitting MS and can go into remission without the use of steroids but, there are some who can't remit without steroids.

It would really take alot to make me use steroids ever again but never say never.

My original neuro believes doctors are over prescribing steroids.

I can't use steriods...
 

...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?

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.

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.

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. ;)

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".:eek: 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!

21+ !!!!! I will never whine again!!;)

I totally expect everyone to whine! What will I do with all this Cheese!!!!


http://www.lowell.edu/users/grundy/images/cheese.jpg

I don't take steroids for an exacerbation. Took them once, and my tongue swelled up and blocked my airway...so no more for me. I just wait out exacerbations. Even if I could take them, I'd probably forego them at this point in my life as I'm starting to deal with some osteopenia according to my bone scans, and steroids can lead to osteoporosis.

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! ;)

Oh YEAH, that's enough cheese for a lot of "whining"

:partytime2::Dancing-Chilli:

Gosh Cheryl, I am just the opposite. I do get the headache. My blood pressure hits the roof as does my "mood" :p

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!!:p

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:eek:( 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!!

Obviously, we have differeing views on this topic :D

Now wouldn't that make for a lively conversation :eek: :p

Most certainly! But we would still be friends at the end of the day! :hug:

Ahhh, thanks :hug:

:mf_swordfight: :D

:You-Rock:

We don't always have to agree! :hug:

I've never used steroids in the 17+ yrs I've had this disease. I've never used ANY meds actually (like, DMD's, Baclofen, Neurontin, etc.) , except Naproxen and a/d's (on occasion), and LDN.

My neuro and doc don't agree with steroids because most of my lesions are spinal ones, meds and I don't get along, and the potential short & long-term side effects.

I have been paralyzed twice, and numb from head to toe on a few occasions too . . . but have recovered as quickly and well as anyone I've heard of who's gone through the same thing with steroids. Apparently, there are absolutely no clinical trials that support the use of steroids for spinal lesion attacks specifically.

Cherie

Gastric Bypass and steroids
 

Hi,
I also had gastric bypass surgery. We are not allowed to take (or rather not supposed to take) NSAID - which are "non-steroidal anti-inflammatory drugs" - not steroids.

I was recently dx and have done 2 courses of IV steroids. I can't imagine not having done them - because I was seeing double, terribly dizzy, and the vertigo was out of control. The steroids knocked those symptoms out very quickly.

I've also done oral steroids (a few times - once for allergies, once for a bad case of bronchitis that wouldn't go away, and most recently as a taper to my first IV dose). I've not had ANY problems (related to the WLS or otherwise) due to the steroids.

I would suggest checking with your doctor re: not being allowed steroids. If you want to take them (and as you see, everyone has a different opinion on this), then you should double check if you are "Allowed" to. I wouldn't want you to rule out something that could help you (if you wanted it) because you thought you couldn't when in fact you could.

Also, just as we're not "supposed" to take NSAIDS (like advil - ibuprofen, etc.) - I take them and have no problems. I'm told that the reasoning for not taking them is because of possibility of developing an ulcer and/or ruining the lining of our new pouches.

Good luck - and I hope you feel better from this flare...

~Keri

That is a great accomplishment for you...Congratulations! I have been at it for almost 2 years and have shed 120. To be where I would like to be I would need another 30. But if I never lose another pound, I feel very happy with my size now. I had never been heavy until after I had my 4th child. Got real depressed about some things in my personal life and .... well.... tried to eat my way into comfort for years. I was never a yo-yo dieter.... just kept eating.... didn't care about anything. Well, true confessions!!! I'd better shut-up. :wink:

Have been on and off steroids for my lungs and this MS, each time I say no more, then i get so far down, it helps, so what do u do. but even the doc said no more oral next does will be iv which I have no idea what to expect other than when I was in one time getting these massive doses of steroids injected but i was so far down hat time I don't recall much of it,

I get so tired of the weight gain from both types of roids, I try and try carrots salads low sugar carbs ect...

I get so hungry on these things arggghhhhh

so I am going to look into a few of the suggestions on here as an alternative,, cause u know dam well in ten yrs we will hear, oh and test show steroids cause this or cause that..... I believe the I will over come the flair sx or signs myself in my own pace, is where i am leaning to wards, have been do this lately

doing my best to cut down on the amt of pills i consume for my ms and doc agrees with me i am not a big pill person, its not an answer , its a band aid, therein lies my problem, I need to be a bit realistic too some of this stuff there is only a band aid for help so .......... what to do what to do

this will be my last time too, I had a melt down this time due to the large amount of roids and the fact i was having a wee bit of trouble mentally with this relapse flair exacerbation thingy, whatever you want to call it. this time it attacked my other side of my body so that was freaking me ,the steroids where pumping me ,and I did actually grab the keys and take a long drive other night, so we all agreed here, No one likes me on roids when i get past my zenith, and worse of all I don't like me when I am all pumped up on them, now i hear others say they sleep on these things, all the time, yes i did too at first cause I was so MS wiped out, but as i progress the roids , I hate em cause they work for me and i hate em cause of what they do to me,

probably could of saved a lot of typing and typed that last line right away

you all have happy Sunday


peace

I am assuming IVSM = IV steroid meds? I'll have to look for the abbreviations.

I have read 2 books already, everything on the NMSS page (printed out most of it for my family as well). And alternative pages and a host of other pages..LOL I am a research fanatic, and when I get something to research I don't stop till I have found the answer to every single questions I want. I researched Gastric bypass for 4 years - 2 for my mom, then 2 more for me. I researched my doc for about 6 months and I had the best!!! LOL

Your history really puts things in perspective for me when it comes to this disease. Do they think you had this a while before you were diagnosed? Do you use a DMD? And if you don't mind (I know us women never tell our age) how old were you when you were diagnosed?

Thanks for the info =)

Frank thanks for sharing your frustration. I hope it helped a bit to get it out. One thing I do know is if you take them for your lungs for COPD or something of the sort, they do benifit. I know, I hate to say that!!! I sound so hypocritical (saying they help in one instance but don't want to take them myself).

You have a great Sunday also!

You are the perfect person for whom the band would work!!! Congrats on your loss, you are not far behind me!! I have been at it 18 months!! I have been heavy all my life and dieted my way up to my heaviest :( I was a binge eater, and, well, just LOVED food. I have a much healthier outlook on food now - well, most of the time.

Just like finding out about the MS. Had I not had GBP, I would have gained 10 pounds in the last week from comforting myself. This can not happen (I actually shed 2 pounds :D ) now, and instead I turned to research!

Good luck with the last 30 pounds. You can do it... Maybe we ought to work together to reach our goals =)

I was thinking that also, but was afraid to say it :o

Yes they are bad for the bones!!! (Singing bad to the bone now... great. I will break out with that song in the middle of church :p )

Why have you decided against DMDs. I am at that cross road now. I don't want to take them, but DH wants me to. I see the possible benefits, but see the HUGE risks...

I take advil as well, now and then. Steroids are hard on your blind stomach because they work on the proton pumps as well, and you get decreased acids in your blind stomach. That is one of the reasons to be careful with NSAIDS, because of your blind stomach and the increased possibility of ulcers, since it would be so difficult to diagnose. BUT, with that said, I never had problems with them prior to surgery, and my chances of having trouble with them now is just as low.

I did go on a very LOW does of steroid therapy for my urticaria in November. No side effects, I just hated being on them!

thats the trouble with many things in life the double edge sword thingy, the steroids for the lungs do help, these for the ms I have doubted them helping, although they did help take the headache (13 days)away i was having with this flair, and nothing else was helping, short of an injection,

its also seems to be this way with other meds and some treatments too your danged if you do or if you dont,

glad to see a number of us feel same way and its not a oh i am only one type of situation. that helps at least


peace

haven't had steriods yet. My neuro's office only does it if there is an eye or physical complication with a flare. They seldom do it for "sensory only" flares, which is the majority of mine.

They will do it if the leison shows up active on an MRI. My main problem is by the time I "shot the tube", my new leisons have been inactive. Nothing like hearing that a leison is new but old already. :rolleyes:

I'm PPMS, steroids never offered to me, don't help.

Just to clarify . . . I did not mean to suggest that one of the DMD’s might not be the best option currently out there for many of us . . .

The CRABs are meant to reduce the number of relapses by approximately 30% on average . . . but the threat to MY health is not the number of relapses I have. My relapses are few and far between, but when I but when I do have them, they are severe.

There weren’t any DMD’s back when I was dx in 1991, and by the time I reconsidered my decision in 2003, my docs were of the impression that they wouldn’t help me (even though I am still RRMS). Almost all of my lesion damage over this 17 yr period has been in my spine, which can be a more serious threat. However, the specialists at the research clinic said that based on my history of attacks, it was their experience that the CRABs were not likely to change the course of the disease for me. (I am also terribly sensitive to most any med, so that may have factored into their recommendation.). The effect of these drugs on ‘disease progression’ is minimal too, so I don’t (personally) see the point in trying them at this point.

Many of the people on these forums are fairly new to this disease (less then 10 yrs), and the push now-a-days is to get on drugs IMMEDIATELY. I went the first 12 yrs (to 25 yrs, depending on when you start counting) without much fanfare (2 bad attacks) and I really don’t think I could have hoped for a much better outcome. Instead I changed my diet, reduced stress, immediately treated infection/fevers, (added LDN into the mix 3 yrs ago) and generally looked after my health much better then I had.

Having a long history to look back on now, I feel I've done reasonably well with the approach I chose. It is very hard to tell if any drug is working for us as individuals, but I believe that choosing to not use them has not adversely affected MY outcome.

I think PwMS, especially those with mostly brain lesions, should probably try the various DMD’s in an effort to hopefully influence the number of attacks they have.

Steroids are used to hasten the recovery from an attack, but they do not improve the degree of recovery, and they do not prevent the next attack. I understand why some people might want to use steroids to potentially hasten the recovery, but I just do not think the side-effects outweigh the benefits, particularly for those of us with mostly spinal lesions (no scientific or anecdotal evidence that they help for us). The side effects include:

Short term use:
- allergic reaction
- insomnia
- psychiatric disturbance
- stomach upset
- fluid retention
- increased appetite
- acne
- bone damage/avascular necrosis (although rare, it can occur even after a single dose of steroids)

Long-term use:
- weight gain
- high blood pressure
- cataracts
- hardening of the arteries
- diabetes
- life threatening infections
- osteoporosis, or other bone damage

They lose their effectiveness after a while too, and I've opted to reserve them for something severe, like breathing difficulties.

Cherie

I have no problem answering your questions. In fact, if you go to the Community Feedback Forum, you can read my Bio since I am a moderator (but not in this forum.) I post here as a member of the forum, not as a moderator! ;)

IVSM = IV SoluMedrol = IV methylprednisolone.

I was dx'd in 2001 after an acute exacerbation that left me paralyzed and numb from the waist down for 3 weeks. About 2 months later I had another exacerbation that clinched my dx. No previous hx. I was 48 and had gone back to college full time. I am now 55. I have been on Betaseron, Beta + Methotrexate, Tysabri, and Copaxone. I am currently in a clinical trial for Tovaxin. So far, nothing has slowed down the rate of exacerbations until the last two years. I have gone from 4+ to 2 per year. I have not progressed to SPMS, but right on the verge. Since I have been in this clinical trial, I have no been privvy to my MRIs and blood work, nor do I know if I am receiving placebo or real drug, it's a double blind trial.

My exacerbations leave me totally non-functional. As my neuro puts it, I am either 100% or zero. I work full time and so not being able to function is not an option. Waiting out the exacerbation is not an option for me. I tried that once, and it only got worse so my theory is get started on IVSM and stop the inflammation as soon as possible.

I have annual bone density scans, and they have been great. No signs of bone deterioriation whatsoever.

I am not a candidate for IViG to treat exacerbations due to my long list of allergies. :eek:

Each of us is different and we all react differently to meds...we all choose our own method of treatment. It's a personal choice. I respect everyone for their choice...;)

Comment on Lady's post....not everyone has the same reactions to steroids...I for one have almost the exact opposite reactions as most people do...and they do help me recover quickly from the exacerbation. That's why I choose to go that route. As I already stated...each of us is different...it's a personal choice. I respect everyone's choice.

I don't take steroids for exacerbations. Actually, I don't do much of anything other than take additional caffeine pills and excedrin.

I had the steroid IV treatment once. In 1988. As part of the Optic Neuritis Treatment Trials. Not for MS.

Tom

You are right, Cheryl . . . I should have said "potential" side-effects. Some people don't have much problem at all with them . . . although most people attest to having at least some amount of short-term side-effects.

Unfortunately, none of us could know the long-term side-effects until the "long term". I have known far too many people who have suffered devastating consequences from the use of them though. :(

Every option available is a "choice" . . . but I was just trying to answer the thread question of "why" I do NOT use steroids with flares. I retired at yr 15 (or 28, depending on how you count it) with this disease, and I didn't have MANY flares that kept me out of the workforce for any length of time. I understand why people would want to get back to work quickly though, especially if this is their only way to support themselves. :hug:

Cherie

I did for one and had a "rebound" effect-my flare got worse after the steroids. I'm waiting this one out...

I feel so blessed that it worked out this way for me to have the l.b. and lose the weight. Now that I know I have ms, I just feel better dealing with everything without the additional weight. At least, knowing that if anyone ever has to help move me around, it won't be such a burden on them. God works his will at appropriate times. My insurance didn't cover the surgery, but I had the exact same amount that it was going to cost as a medical reimbursement from a car accident injury. It just seemed like the thing to do, and as it turned out, it was.

I haven't been doing well working out, with the fatigue and all. But this summer I will have more time to devote to trying to get more exercise. Thank you for your encouraging words. It makes me feel not so alone.:hug:

Took steroids 3x - the first time helped - the other two did not and caused long term side effects - so no - I would not take them again -

What type of side effects did they cause for you? That is what I read, that they lose their efficacy after time, and are really only used for certain exacerbations, others they won't help anyhow.