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Old 07-10-2012, 05:24 AM
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shellos8 shellos8 is offline
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Posts: 105
IV Steroids making me feel worse?

First of all I just typed 3 paragraphs and then hit some key and lost it. I hope it didn't go thru to the moderator because then I've posted twice. *sigh*

Anyway, I just did 3 days of IV steroids for the first time on Thurs, Fri & Sat. The process went well with my only real side effect being a very flushed face for a couple of hours each morning.

Sunday I was fine. Didn't really feel any different.

Then starting yesterday I went all haywire. I'm more off balance than usual. I'm so shaky that it's embarrassing. I'm an insurance agent so have to deal with clients and here I am shaking like a leaf and also in such a fog I have a hard time saying and doing what I need to do. The pain in my left hand is back to where it was before I started taking the Lamictal it was helping with the pain. And I'm really, really tired.

Is this normal to feel so much worse after the steroid treatment? And if so, how long does it last? I'm considering not even going into work today and just feel terrible for that too. Like I'm such a burden and should be able to "deal" with this. But I feel so awful that all I want to do is sit here. Please tell me this is normal and that I will feel better.
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Old 07-10-2012, 12:01 PM
Redwings Redwings is offline

Join Date: Mar 2009
Location: California, USA
Posts: 2,438
It's normal to feel terrible after an IV steroid series. Some people actually get so sick afterward that they decide never to do it again. You're probably passing through the worst of the effects right now, so you'll feel better in a few more days. But it's possible that you may still feel some of the effects in various ways for a couple of weeks.

For first-timers, it's a good idea to take a week off work because the physical and mental effects can be so overwhelming. Three days of high-dose steroids is quite a wallop, so don't think you have to tough it out at work if you really don't feel up to it. It can be nice coming back to work knowing that you won't have to spend time undoing things you did under the influence of brain fog.
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Old 07-10-2012, 12:56 PM
beadyeyes beadyeyes is offline
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Join Date: Mar 2012
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I hate IV steroids and after having gone through 2 rounds way back early in my MS journey I refuse to do them unless it is due to a really bad vision event.

I hated the way I felt after these treatments, physically and mentally...I believe that my weight issues started as a result of steroids and I have been unable to recover from the weight I gained back then.

I hope you get to feeling better very soon!
Angela Dx RRMS 7/2001; Copaxone 9/2001
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Old 07-11-2012, 11:40 AM
Texass Texass is offline
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Location: Boston
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I hate when I lose the whole essay I type on msworld. It has happened to me a few times as well.

The side effects from steroids can be crazy, so yes you may want to take the first 3-10 days off of work.
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Old 07-12-2012, 11:42 PM
hexed hexed is offline
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Absolutely. I know it is a different ride with everyone else, but here is mine. I went through 3 days of infusions with an at home home health service. Infused 1G of SoluMedrol every day.

I felt tired but antsy at the same time. Very weird feeling. I was sore all day it seemed. The worse part though is I was a nutcase. Crying....angry..snapping at people..crying..rinse and repeat. I told my wife I have a feeling I just found out what it is like to either experience the emotional/hormonal problems from PMS or being pregnant. Never thought I would say that.. but she agreed. It was rough on both of us.

My symptoms which went away within the first 2 weeks were my numb and tingling legs/feet/groin/abdomen, and my MS Hug (high waisted pants right under chest 2 sizes too small is what my hug felt like).

The symptoms that went away within 3 days were my Mickey Mouse hands. They were still numb but it felt like I was wearing Mickey Mouse hand gloves and then attempting to do normal things like tie a shoe, type on a computer (I'm IT) etc..etc. That was HORRIBLE. The symptom was gone in about 3 days...

...but 2 1/2 months later my hands are still numb. Kinda like they are asleep but only really when something is touching them or I am touching someone else. Really sucks to find lightly scratching your wife's back irritating and weird feeling.

oh well.. I've answered too much. I'd have to agree with others that you should call in for those days at work because to me.. that stuff made me "sick" and I dont go to work sick. You really need the off time, mainly to sleep.
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Old 07-13-2012, 09:55 PM
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CougarMama CougarMama is offline
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Yep, it can be tough!

I've done the high dose steroids more times then I can count and reserve them for only truly bad flares (lose of sight, issues with walking).

You really feel like a pycho in someways when your on high dose 'roids. Yelling, screaming, quick to anger or cry. It's actually not the best situation to be dealing with customers and co-workers in and I've learned to listen to myself.

If you are questioning if you should take a couple of days off, I would. If you feel awful and can't control yourself, what's the point of putting yourself through that and potentially damaging working relationships?

That being said I never took a day off because my boss preferred me at work as a *********, then to EVER take a day off work. I think he preferred the aggressive, assertive personality that came out!
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Old 07-15-2012, 01:31 PM
jmfmwc jmfmwc is offline
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I just finished a 5 day course of Solumedrol (1 gm daily). I took -3 days off after the last infusion in hopes of gaining back some sanity! I went back to work on Friday and did ok I suppose. I get extremely sweaty from steroids - I brought some clothing changes with me and was very very tired by the end of the day. I find that I'm exhausted after my infusions are done and I sleep about 16 - 18 hours a day - weird for me since I normally sleep no more than 5 hours. I did put on the 10 lbs of steroid weight that I always seem to gain but most of it is gone now. Thankfully I have regained some feeling in the left side of my trunk and my left leg. Hoping the improvement continues over the next few weeks.
DX 11/9/11
Rebif Therapy 12/13/11
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Old 07-30-2012, 01:16 AM
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truckin truckin is offline
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Withdrawals like this?

I just finished 5 days of 250 mg Solumedrol 2 days ago.

I was weak and spacy yesterday. Then this afternoon about 4 PM I get:

huge cramps in my right rib cage and neck,

burning throat,

tight, trembling spasms in my shoulders and arms,

burning down there,

tight diaphragm,

extreme alertness.

I took my Seroquel and Nortryptyline at bedtime, plus Skelaxin, but I'm just racing & shaking.

The neuro nurse and the infusion nurse had said my dose was too small for a taper. Wondering how I slept OK the day after but then today, wham!

Any suggestions on how you deal with/alleviate this?
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Old 08-01-2012, 04:04 PM
cranberrysauce cranberrysauce is offline
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yep, steroids make most people feel icky. You just have to learn if they work for you. For me, they do and I know I have to deal with the steroid side effects to get the MS flare under control sooner.

Now that I've had MS for a few years, I don't panic quite as much when I have a flare, so I've opted to not take steroids for less severe attacks. When I was first diagnosed every symptom drove me bonkers and I had to do something!!

I get cranky, irritated and want to eat 24/7. Drink water, eat healthy and take a couple days off. My side effects are always a few days in too. It also depends on how quickly I taper off. I can't decide if a long taper is better or worse for me. I do hate the weight gain with steroids. I gain up to 10 pounds every round and the numbness in my legs has made it increasingly hard to lose it afterwards

Good luck! What you are going through is pretty "normal", now you just have to decide if you want to try it again next time!
Symptoms Oct 2009, Dx Feb 2010. betaseron 2/10-2/12. Copaxone 3/12- present.
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Old 08-03-2012, 03:57 PM

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Question Were you put on an oral dose taper-down after?

I was just in the hospital a few weekends ago with mega-dose IV steroids. They sent me home on a prednisone taper (which I'm still enduring). I'm down to 3 prednisone a day, but I also get really shaky and am still quite weak. Actually was going to ask if anyone knew if starting Neurontin while on Prednisone could make my sx worse again.

The last time that I had IV steroids WITHOUT a taper down was last September. I stopped on a Friday (5 day tx), and on Saturday *WHAM!* I felt like I'd been run over by a truck!! Practically felt worse than before I'd begun the tx. On Sunday, I felt bad, but not the same as the previous day; just felt like I had before the tx started. Went to see if I had a UTI or something, but it came back normal. Basically, the IV tx hadn't worked. I had to ride it out (flare) for, basically, the rest of the semester while teaching.

This time, it is being handled the same as in January (hospital stay for 1 G. infusions, followed by oral taper). The only difference is that I seem to be feeling worse/weaker. It could simply be that I only have my dh here to help out and I'm trying to do too much (parents were here last time).

We just this afternoon have "moved me upstairs" b/c I suggested finding out if our insurance would cover a stay at a rehab/care facility. I could barely move and the nerve pain, fatigue, difficulty moving was just too much; even with the help of a rollator. Don't know how it's going to work out, but my dh said he'd get a tv for me up here. Wants to try doing this before the idea of a rehab place.

I guess I'm saying all of this to say, "Yes, you should expect to feel yucko for awhile." Your body went through a lot on that tx, and it isn't easy to just bounce back (imho). I agree that if you feel this bad, you should take a little time off until you feel up to being at work. Oh, and I think if all of us were to admit to how many times we've typed a good long explanation (or even a short one) just to have it "wiped out" with one keystroke, you'd find yourself in good company!
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Old 09-07-2014, 10:42 PM
mimiflo1 mimiflo1 is offline
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Miserable side effects

I have PPMS and have a lot of all over body prickly, tingling, jumpy symptoms that caused me to have my first steroid infusion cycle. 3 day/1g. The side effects after the 3rd day almost had me in the ER. The all over body swelling and abdominal swelling seemed to accentuate the prickly, painful symptoms I had the treatment to get rid of, and had me in tears. I have a high pain tolerance, so the pain is one thing, but the terrible chilly prickly feeling in my entire body was unbearable. My last infusion was 3 days ago, and today has been first day where symptoms are bearable and I can get some sleep. The other symptom is feeling like parts of my body are sitting in ice water. At times I can't figure out if I'm feeling heat or cold. My belly looks like I'm 8 months pregnant. Has anybody ever had a reaction like this to a steroid treatment? I didn't get a tapering schedule. Yikes!
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Old 09-12-2014, 02:10 AM
victory1 victory1 is offline
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Location: holton, mi
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Now I'm scared I'm supposed to start intravenous steroids tomorrow cause my left arm is weak. I already suffer with anxiety don't need any help with that and heart palpitations. My neurologist did some blood work on me n called in said he wanted me to do this treatment. Did he find something that why I wonder. Forgot to ask I was to upset..
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Old 09-13-2014, 08:13 AM
madlarjack madlarjack is offline
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Location: Raleigh NC
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Steroids Every 8 Weeks

I hope it is ok to post this question here. I have searched the site but I have not been able to find this exact question.

I was diagnosed in July 2013. Official diagnosis was RRMS but the Dr told me it was likely PPMS. He officially changed the diagnosis in August 2014. I had a seizure in April, caused by one of the meds I was taking. He took me off the medicine and they stopped.

I went in for a follow-up visit. While there, I brought up some of the walking issues I was having (numerous falls, one resulting in a fractured wrist). He had me walk for him. When we finished, he said things were going downhill quicker than he hoped. He wants me to start steroid infusions every 8 weeks. The infusions are for 3 days.

Has anyone else done this? I tolerated the 1st round ok. Felt bad for a couple of days after the treatment ended, kinda like I had the flu. I know there are some issues with doing this long term (bone density), is it worth it? What are the benefits?
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Old 10-21-2014, 04:46 PM
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ejonesbowlie ejonesbowlie is offline
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Location: Colorado
Posts: 45
My Steriod Story...sounds similar to many of yours..

I also just finished up a 4 day IV steroid infusion with a 12 day taper. My primary symptoms have always been walking issues and spasticity. After I finished the taper I noticed that my spasticity had improved, but I felt almost too loose/shakey/unstable. Now, a little over a week after finishing the taper, I feel the same, but in addition I have been hit by extreme exhaustion and also have the weird "cold water" sensation that someone mentioned...also more "twitchy and twingy" that normal. I assume that things get better at some point? Right now it seems that I have gotten some improvement but with the trade off of adding other unwanted/unwelcome symptoms <sigh>

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Old 10-26-2014, 01:27 PM
Mrsparsons Mrsparsons is offline
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Join Date: Sep 2014
Location: Charleston, West Virginia
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Steroids are killer!

I just finished 1000 mg Solumedrol infusion for 5 days, now on prednisone taper for another week. The first 2 days was a piece of cake. The first night I was so wired I could not sleep, but I had energy. Now I am weak and tired, can't sleep past 5 AM, waking w/ headache every morning. I have gained 14 pounds of fluid and have a major case of belly-aches/ belching and abdominal discomfort every time I try to eat. I cannot wait until I feel better again!
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