First IV steroids and I am scared...

[Pressednotcrushed]

During the DX process I was given oral steroids twice both times not only did they not make the pain better it made it 10 times worse and spread out. The second time I could barely hold my head up my neck hurt so bad..... It didn't hurt at all before the oral steroids.

Last Friday after a few weeks of increase in nerve pain and weakness in my legs I called the Neuro he decided it was a flare and is sending me to get a Solu-Medrol IV for 3 days starting tomorrow. I told him of my bad reaction to the oral steroids and he said that we should still try this and to just be watchful.

I am so scared teat the IV steroids is gonna leave me worse off than the oral. I am willing to risk a few days of extra pain if in the long run I can have my daily life return to how it has been for the last 5 months. It is kinda depressing how low my standards have become.

Has anyone else had bad reactions to steroids but had their flare go away? Is It worth the risk. I am really trying not to panic. I made it 3 days without doing that but at the last minute I am getting very scared.

[maximumlite]

I just did my first IV steroids last week and for me it did'nt as well as I thought it would. They did what they were supposed to do no more eye pain, no more double vision and the headache went away. But for me pain has increased and my whole body feels like yuck. I have'nt been able to sleep during and now after but my neuro did give me a script for Ambien today and I got my Xanax script refilled.

To my dismay my neuro said I was secondary and now has order'd pulse steroids every 6 weeks but at half the strength that they gave me last week so now like you I'm scared also on how my body is going to react. They did not give me a taper dose and I've had people say that if they would have I would have had a better experience with it, I hope you have a good experience with it but I would ask for something to help sleep and maybe some Xanax to take the edge off and hope you enjoy the boost of energy and it does the job for you as I know it stopped my flare just did'nt like the side effects but than again I did'nt like the flare either
Best wishes to you

[isamadjul]

I hope someone else tries to explain this to because sometimes I don't explain the best.

Steroids don't "take the flare away" it reduces the inflammation the flare causes. I like to explain it to family like a sports injury. You hurt your knee and its swollen, so you ice it. The swelling goes down and it works better BUT its still swollen for awhile and slow to move "right".

Steroid will reduce this swelling and help that but it doesn't heal that flare spot. That spot had damage done to it. How much and if it will heal it unknown...YAY MS....

Some ppl find that steroids are like a miracle and they are up and running after the first or second round. Others (me included) don't find that effect at all. What I find is that I sleep more, I walk worse, feel like I was run over by a Mack tuck then it reversed and ran Ive me again...and again. I feel that run over feeling in my muscles for maybe 3 days, I take pain killers to lesson it and it does help.

NOT TRYING TO SCARE YOU!!!!! MANY PPL HAVE GREAT REACTIONS!!! You seem to maybe react like me so I thought you would like to know your not alone. I way how I feel with the thought of the "side effects" of the steroids before if take them. I often decide to do them though because they have a job IMO and in my Neuro opinion. They stop the flare from doing more damage then it would if I didn't do the steroids.

anyways I hope I didn't ramble to much for you and I hope I helped and didn't scare you.

isamadjul
(allyson)

[CasinoKathy]

Hi pressed- I was on monthly IV steroids for a year- started with a 3 day course. They weren't for a flare- just a add on with my betaseron.

I never had any bad reactions in all that time.My weak leg got better each time (immediately) but only lasted for about 3 days. But I so looked forward to those "good days" Unfortunately, steroids are not a long time thing. I did slow down after about 8 months.

[maximumlite]

Casino,
Just wondering if the monthly were at full strength or at the 50% like he is going to do to me and where you given a taper dose? and does the taper dose really make a big difference on how you tolerated it?
Thanks

[Pressednotcrushed]

Maximumlite I hope the lesser dose makes things go easier for you. I have something to help me sleep on order at the pharmacy (can't remember what) Isamadjul you explained about the steroids just fine, I kinda knew that was how they work but my mind latches onto things and ignores other parts so you helped me look at my situation more clearly. It wasn't until I was explaining to my mom why I needed to go get the IV done that it finally clicked in my head that I was having a flare.

I originally called my Neuro to get him to maybe increase my gabapentin dose or something not to send me for steroids. I've already been stuck on the couch or in bed for the most part of the last week due to pain and weakness the thought of adding to that is overwhelming.

I don't know if I will be able to get medicine for pain unless it gets so bad I have to make an ER visit. I see a pain specialist next Wednesday for the arthritis in my back and my PCP won't prescribe anything higher than a double dose of alive without the pain specialists recommendation.

Hopefully all my worrying is for nothing. Thanks for being here to encourage me and help me figure things out a little better.

[CasinoKathy]

Answer for Max

My SMIV were at full strength. Hope yours gets better for you!

[rsb]

this is totally anecdata, but I have talked to several people who received IV steroids for various autoimmune disorders, including MS, who tolerated them *better* than oral steroids. Certainly not everyone has that outcome, but it's definitely possible.

Best of luck to you!

[a.nukem]

I hope today's treatment went well, and when I had my first IV steroids done I actually did very well. The only issue I had was I didn't sleep well for about a week, and slept very little for the first four or five days I think. It really wasn't bad... I did get cold during the drip though so the nurses were kind enough to bring me a blanket... I'd suggest bringing a book or something you can do with one hand..

[isamadjul]

another thing though...is I do my treatments at home. If i find that my arm is getting old I can slow my drip down or if I feel its taking to long I can speed it up. We (my DH and I) have been taught how to time it and do all the stuff at home. The nurse comes out and starts the IV and then I do my 3-5day treatment at home.

Someone said that they know ppl that do better on the IV then on the oral...For me this is true for my mood. I did a taper dose 1x!! I will never do it again. I could have killed everyone. It was just before Thanksgiving so... although with my odd sense of humor it was kind of to tell family how I felt and blame it on steriods...HAHAHAHA (oh sorry thats wrong of my right? )

goodluck today and try to smile at something to brighten your day!

isamadjul
(allyson)

[Waydwnsouth1]

At the risk of scaring you even more I will share with what happened with my first IVSM. The first 2 days went fine but n the 3rd day I had problems. I started having shortness of breath and chest pains.

Long story short I ended up in the hospital for 4 days. My cardiologist ran an EKG which came back abnormal. It took 2 days to get me a slot in the Heart Cath lab. In those 2 days I miserable. I was extremely tired and in general just did not feel well. Kind of run down. I had the heart cath which was perfect. Had a CT Scan of my chest with contrast and they discovered my lungs were filling with fluid. Which was attributed to the steroids.

Now all that being said the steroids did their job. The benefits far out weighed the risks in my opinion. Now my Dear Wife's opinion is far different. I will really have to think aboutitlong and hard before doing IVSM again. I guess it will just depends on how bad things are.

Good Luck to you! Remember everyone reacts differently.

[Pressednotcrushed]

The first day wasn't too bad when I was getting the infusion, they had me wait an hour after it finished just to keep an eye on me. It was probably a good thing. A few minutes after the drip was done I started getting very dizzy an nauseated. They got the Dr. to prescribe an anti-nausea pill and it helped a bit.

When I got home I was actually able to sleep for 3 hours but woke up with horrible back pain and all the rest of me hurt pretty bad too but the back pain was worse and I doubt I will be able to go back to sleep tonight so I am glad I got that nap in.

I have arthritis in my back so I was thinking that even if the steroids didn't help reduce the flare my back would feel better but it seems to do the opposite.

On the plus side all the nurses are very nice and they have a touch screen thing that I can use to watch TV surf the internet or play games on. It is usually a chemo clinic so I am sure that is part of why they try very hard to make the patents as comfortable as possible.

I came home with a list of things to remember for tomorrow, like bring a hair tie to pull my hair back tomorrow just in case I get sick again, go to the bathroom before I get all hooked up and eat an hour or so before I go in. Hopefully those all work better for me.

[isamadjul]

forgot to tell you

I wanted to tell you for me the taste is not mmm good So I suck on a lemon candy or drink lemonade when I do steroids. I eat lemon pound cake from starbucks (cuz I would marry starbucks if I could ) I drink water with lemon in it...

I think your getting the theme here. Lemon has a high acid content so it helps. Someone on a different thread said Tomato juice worked for them to. Same thing high in acid. So it cuts through that metal taste.

isamadjul
(allyson)

[Hawkgirl]

I'm doing 3 days of IV steroids right now too. I bring butterscotch candies to suck on, because of that vile taste. I react better to IV than to oral prednisone--doesn't upset my stomach as much.

Usually IV steroids take down swelling which helps your symptoms. Sometimes I've had good results and come back stronger; sometimes it made no difference. This time it is like someone turned on the lights! I'd had no idea there was so much light; I was so used to everything being dim, like the curtains were closed. But what I'm really hoping is an end to this MS hug!

But your steroid withdrawal will be terrible! My stupid neuro didn't even order me a taper. My old neuro always did that, and also suggested lots of potassium (bananas, banana smoothies, etc.) Just all-over body aches. For me, however many days of steroid I did will be how many days I'll be sick afterward. A taper (oral prednisone stepping to a lower dose each day) helps.

Something to suck on, lots of bananas afterward ... that's my advice!

[1683421153@facebook]

IV Steroids

From someone who drinks lots of caffeine. I do not recommend any caffeine at all. I made the mistake of drinking caffeinated drinks while getting my SoluMedrol IV and I would be up all night long. I thought the aftertaste was horrific and would eat peppermint candies to cover the taste.