Steroids. Tell me your story.
 

I have been flaring lately, and I have been having massive cog difficulty, and now a dropped left foot, and increase in anxiety, and I just keep spinning. They are talking of advancing my dx from RRMS to SPMS and have asked me to go to the big girl hosptial tomorrow to talk about starting me on some IV Solumedrol.

So, im scared! I did steroids years ago, and have sworn the only way I would repeat them was if I had optic nerve issues. The trouble is this flare doesnt seem to want to break, and I am spiraling from one issue to the next, like my brain is really angry. I am considering letting them restart some steroids, but am lost, confused, cog fogged, and worried.

Tell me your stories please. What was your experience?

I also hate steroids so I do not have any good stories to share. I have only used iv 'roids once - 5 days/no taper. In retrospect, if I have to use them again, I will be asked to be closely monitored. Blood sugar , etc. My heart rate was rather rapid for several weeks. I am also not sure if they helped. The only good thing steroids is that I lost 50 pounds in the few months following my infusions. Of course, I gained it all back over the next year.:rolleyes: My neuro and I have agreed to no more steroids unless I experience optic neuritis or significant, rapid impairment. Take care!:hug:

I won't do steroids again. Besides being terrible for your bones they really didn't provide me with the relief I thought they would. It just wasn't worth it to have to endure the side effects for such minimal improvement.

I had ON a couple of months ago and my Neuro recommended IVSM but I declined. My episode resolved itself within 4 weeks.

The only good story I have is, the first time I had IVSM, was in the hospital and about 2 weeks after, with some PT, I went back into remission.:)

However, it was short lived and a few months later, I had to do IVSM again and it didn't work....AT ALL. :mad:

I hated it the first time but even more the second time. I even tried it a third time, glutten for punishment that I was, and it did NOT work, again. :eek: No more roids for me.

I had segwayed into SPMS....and 'roids do not work on SPMSers (period, paragraph). I don't care what your Doc or anyone else says.:rolleyes:

I still think your best bet is Paxil or some other dirty little SSRI. :p

3 rounds of IVSM 5 days, and 7 rounds of oral roids 10 days in a year and a half... I can say nothing nice about them, other than my doctor refuses to try them on me again. Good luck, hopefully your experience will be better than mine. I can say it was easier when they let me do them at home since I kept getting car sick from them and the ride to and from the hospital was horrible.

I've had about 5 IV solumedrol experiences in a year and a half.... and of course, for the days I have the IVs, it sucks. Actually, I didn't find it too bad...and I'm very sensitive. I was a little nutty from them (but it sounds like you're already struggling with that part of it from the relapse itself). It doesn't taste good while it's going in...and I ballooned up a little bit, but that went away within a few days. As well, my symptoms also went away within a few days of the steroids - so to me, the 5 days of mild-moderate discomfort were well worth it. I haven't had any infusions since last spring, before my re-dose of HiCy...it's the longest I've gone (prior to that, I barely made it 2-3 months without a dosing!).

Look, you're the one in your body - only you know if you need it. To me, if there's a chance of symptom reduction, I'd take it...but that's me...I hate feeling rotten, so I do whatever I can so I don't feel that way...and like I said, if it takes 5 days of yuckiness for improvement, I do it.

I also had my infusions at home and so it really was only mildly a nuisance. One of the times, I even worked during the day and had infusions in evening. Took only an hour and then the nurse was gone.

I do hope you feel better soon...no one deserves to suffer!!

LOVE IVSM! I wish I could have it all the time, I'm not joking. It does keep me up late a little and make me irritable (I'm told) but they seriously help me every time.

My system has always been robustly tolerant of such things, I'll admit it, but please don't assume they're not for you until you've given them a chance for yourself.

Prednisone does a number on my mood and makes me eat everything in sight, nonstop, morning, noon and night. :eek:

They're delicious with fava beans and a nice chianti. ;)

Jim loved his steroids too. He felt really good and wished he could have them all the time.

Hope you get relief too! Don't be scared.

I am sorry for making such a stupid broad statement about SPMSers not being helped by IVSM. I'm just mad that it doesn't work for me anymore. :rolleyes:

Obviously, where there is inflamation, IVSM can help, at any stage of MS. As with anything else, just don't overuse it.:eek:

:grouphug: