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"

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!!

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!!

Obviously, we have differeing views on this topic

Now wouldn't that make for a lively conversation

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

Ahhh, thanks

We don't always have to agree!

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

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