Weird Steroid Side effects

[rendean]

HI all,

Sorry for the long post:

Just finished my 2nd day of IV steroids. This is the 4th go round in the past year. The other 3 episodes and experiences were identical. The 1st 3 times the steroids were for severe vertigo and/or unrelenting leg pain. No real side effects, slight metallic taste, no burst of energy and only a minor decrease in symptoms. This round was for new right arm weakness, overall increased fatigue and sudden renewed loss of balance but not necessarily vertigo.

This go round after all the red tape and idiotic office scheduler ordering the wrong med, then the wrong dose including calling ME to ask what med I wanted and at what strength ad length of treatment...bozo.

Well, this round of 'roids has kicked my butt. Last night was horrific! Every symptoms I have ever had resurfaced..from vertigo to leg pain to MS hug to increased right sided weakness, new horrific pain in left hand and then numbness in arm (considered TIA for that 3 hour episode) and of course the insomnia. I threw my entire arsenal of meds at it and NOTHING fazed it.

Stop for background info. My son has a stomach virus that caused him to lose at least 10  pounds of his slender frame of 126 pounds at 5'7". That's what I checked today and he is keeping most fluids down. Who knows what i was before mean mom stood over him with a glass of  Gatorade and demanded sips of it every 15-20 min. I have had no symptoms but am worried about him. We 've had many trips to the ER for dangerous dehydration before...once his body gets in this mode it's hard to put the brakes on it. So mommy worry is definitely a contributing factor.

So, despite DH's many , many gallant attempts to comfort me, nothing helped. Now is the weirdest part. Today's infusion could be felt first in my right back molar causing pain reminiscent of my TN pain, then moved to the next tooth and so on. Could even feel my cold sore flush. (Canker sores have healed!!!!!!!!!!). This continued to my left side and seemed to set off the TN on that side as it did yesterday. I was in tears due to the TN pain yesterday.

After my face the pain continued to my arms and legs. Not horrible but still noticeable. I now have lots of energy as I went grocery shopping and fixed dinner; but still feel  background fatigue.

Has anyone else experience a flare in symptoms while taking steroids or am I  the only owner of a weird body?

Thanks,
Ren

[michelleric]

Are you feeling better? I really hope so, let us know...
Michelle

[rendean]

Thanks for the response! Sounds like you had a horrible time with your infusion. Weird that my most intense symptoms were during the infusion with the exception of the insomnia and the left hand pain/ left arm numbness.

Binx, it sounds like the steroids set off something in  you as well. Were you around anyone else or exposed to any body with an illness while you had your steroids?  The swollen glands in your neck is what made me ask.

Yep, the insomnia is to be expected, unfortunately. I was starting to feel better but the hoarseness I have experienced since Friday and had attributed to the steroids is evolving into something upper respiratory. Today, my left ear feels blocked and the hoarseness is worse. I feel crummy and can't decide if it's the MS, the steroids or the URI.  Guess I will be getting something mundane on top of the rest of the junk from the steroids. I know my cog fog is worse. Even more so than when I wrote the above entries, which I obviously did not proofread...sorry for all the typos guys.

Hope things get better for you binx. If you ever get an explanation for your docs about  your reaction I would be interested in hearing about it.

Best to you as well,
Ren

[illinwithoutacause]

i just saw this and felt like responding even though you've already gotten lots of info from other folks.

i am not diagnosed, but underwent IV steroid infusion in early february for suspected myelitis in my c-spine and had wretched side effects, too.  it was my first time with the medication, so i didn't know what to expect, but it was horrible.  i actually haven't been the same since.

the first two days were yucky, but then i woke up in the middle of the night after the third infusion drenched with sweat and nauseous, my pinky and ring fingers on my left hand felt virtually dead and i had an aching pain traveling through my left side from the top of my head to the tips of my toes.  the glands in my neck were all swollen for a few days, my legs were twitchy and wobbly and have remained so on and off to date.  i had all that on top of the insomnia and anxiety that are typical side effects.  i did not derive any improvement from the treatment what so ever.  the doctors haven't really explained why that all happened to me yet.

i am glad to know you are improving and hope that continues.  i hope you have been able to avoid additional illness.

best wishes,
binx

[rendean]

Thanks you for all the input and kind thoughts. Each day is improving, thank goodness. I just have never experienced the full gamut of all my varied symptoms all at once .

Kev is slowly regaining the  weight loss. Yeah!!!  Stella, Kev has bee in Egleston children's hospital a minimum of 10 times. So this is old hat to os.

My oldest just returned from a 7 day spring break cruise trip only to return with a whopper of a URI. Just what I need , another  sick kid in the midst of steroid therapy... oh well, can't change happen stance so I learn to live with  it and keep a large bottle of instant hand sanitizer in prominent view. She had the time of her life and had the best time at spring break ever. She earned it after making Dean's last semester and probably this one too. Course subjects:microbiology II; intro to Toxicology; ; statistics; Biochemistry I and Senior seminar. Proud momma and poppa here!!!!

Well, this all the nw that's fit to print.Thank you all for your support and concern, It is certainly appreciated even if the cog fog may have garbled some thoughts and sentences. Have a good week!

warmly,
ren

[lovemy6monkeys]

Ren,

I just wanted to offer some gentle ((hugs)) I hope the rest of your treatment goes better and that your son feels better quickly too. ((hugs))

~Jess

[stella213]

Good grief- sorry I didn't proofread that. I may need to keep my thoughts to myself from now on! sorry guys!

FEEL BETTER !!!

Stella

[stella213]

I too, am wondering how yuo're doing this morning morning? I hope you are much better and pray you are no worse-at the least but it sounds horrible and I'm soo sorry!

Has your son been to the hospital this time or were you referring to the past? (sorry I read it twice but cant get it thru my thick skull) I think it may be time for him to go back if he's no better today-sometimes they still get dehydrated even w such a caring momma watching over 'em and making sure they're drinking something ya know?.  How many days has it been now? 4-5? Poor kid...

Poor momma... I wish there was something I could do to help you. I'm feeling pretty bad myself from these 'lil pills I'm taking and what your on is like eating 200 of these at the same time-or something crazy like that so I can't imagine... (I guess that's whats making me like this-maybe not)

I think you should call and talk to a proffesional about all of this and Ess could be right so check that out too cause you know what everybody says don't you? It'll never happen to me...and then BAM.  

One of the top hospials in the country mixed up dosages on an IVig treatment for my son and I'M the one who caught it! So I'm just saying-it happens.

Well I've made this way too long and I'm sorry! I just wanted to check on you. I do hope you both are better.

Stella

[essdipity]

Hey Ren. Is there any chance that the strength and dosage were bungled? It seems that everything else was. My confidence level in those folks is at zero.

I really hope you aren't coming down with a bug? How are you this morning?

hugs,
ess

[rendean]

Thank to all of you for the kind and positive thoughts. I hope I'm not getting my son round of stomach ick. Certainly not what I need. Funny, the morning  of the day Kev got sick, my PT warned me about this new bug going around as she wanted me to avoid at all costs since she could see my dramatic decline from Monday to Wednesday and even offered to push the neuro to get the steroid rolling..she's truly a  gem!

Off to sleep, perchance to dream...

Ren

[doublevision1]

I also wonder if you've picked up a bug from your son.  Is your temp up, even a little?  If so this might be a contributing factor.  I'd say call your neuro first thing monday morning though it souns like you are losing confidence, understandably.  Sorry you're feeling so awful, esp with so much going on at once.  I hope tomorrow is a better day.

[starryeyes1]

This sounds completely terrifying. I am on my 3rd bag tomorrow and my side affects have been headache, lower backpain,aweful taste in my mouth which lasts all day. I did have insomnia, talking really fast, out of breath, and less of the vertigo today, which I am so thankful for.

Have you contacted the Dr who ordered this for you? I am wondering if they gave you the correct stuff. Very concerning. I hope your not coming down with this sickness too. It can wreak havoc on us much worse than thee average healthy person.

I will say a prayer for you to overcome these terrible symptoms and get well.
God Bless!!

Huggs,,,
Kristi

[rendean]

Actually, I never gave the extra fluids for my self any extra thought except  immediately after to flush the metallic taste. Good idea, thanks!!!!

I appreciate the hugs and positive thoughts!!  Off tho have another glass of water...would prefer wine but............

Ren

[Sarahsmom46]

Geez girl, you all have a lot going on right now.  Too much really.  

I used to get rebound symptoms "after" I finished the steroids not during them.  Hmmm...Ok this sounds crazy, but are you getting enough fluids right now?  Drinking a lot will not help the pee'ing issues, but maybe will help with the symptoms being so extreme. Is there any chance you picked up the same illness your poor son has?  Poor guy, he must be miserable right now.  

I wish I had something to say that would help take this away. A

Sending you hugs and positive thoughts that this will resolve quickly.  

Julie