IV steroids?

[figuerpa]

Well I have been in serious pain with my leg for the past week and a half, got to the point that i finally called my nuero. Well his nurse called me back and told me that they are going to start me on IV steroids, the nurse will called me tomorrow to set up a schedule to come to my house to administer it.

Oh and she told me that they got my MRI results back today, not sure if that is the reason they are doing the IV steroids, maybe he saw more lesions? Maybe that is why he is doing the more aggressive approach? Who knows but she said he will go over them with me.

My question is, what kind of reaction should I expect from this? I have only ever had the oral steroids so I don't know what to expect with the IV steroids.

Thank you,
Paula

[Michelletenee]

I went on IV steroids for my MS the first of August 1000 mg a day for five days on the forth day after that treatment I went stright to the ER and stayed in the hospital for three awful days!! My heart rate went as low as 28 A minute! My heart was on a EKG the whole time. Stopped my periods hot flashes was told in was in Medapose at 48! The whole month of August September and October I have been in terrible pain. Been out of work and just home and depressed My hands were so weak I couldn't even hold a cup of coffee they felt like they were on fire! they are better now lasted three weeks pain before that was in my shoulder blades. felt like someone was pulling them open like a wish bone! On Lyrca. It's finally starting to work! Gabapentin did not work. Yesterday I got a Tilt table test. They are seeing if there is nerve damage and why pain is so horrible. Can't drive my new car because I feel too spacey too.  Today it feels like there is a person on my shoulders! I want to know How Long Does the 4000 mg stay in my 140 pound figure? I was 124 before the treatment. Weight don't bother me I am 5ft 7 inches. So Now I have Heart, Mind and Body issues! I want my life back!!!  MS didn't cause me this Pain the poison they put in me hurt me! Point..... Never felt such pain until the Steroids! Never again! Yes Still in Pain a Today! Waiting on the results then going to take It from there! I need luck! And God for sure! Michellerenee

[ProfS]

Eat bananas, carrot sticks, apples--and drink tons of water, literally until you can't drink any more.
I've has MS for 13 years, and an aggressive course.  But, trust me, you can make it through.  In many ways, it made me a better teacher (I'm a college professor) because I feel more attuned to the struggles of others.  
It will not be as bad as you expect, and you will find strength you never knew you had when the tough times come (and they might be fewer than you think).
I'm sending hugs and prayers--we're in this together! :)

[ajb1982]

Hi,

Just reading through some comments trying to understand my symptoms and side effects. I'm 25 and I just found out I have MS a week ago. Im receiving IV steroids and I have been extremely nauseous. Is anyone else feeling this? It seems like everyday i'm feeling sick unless i'm eating.

[figuerpa]

Lulu,

Thank you, I will enjoy the family Christmas tomorrow. I am getting appitizers and desserts ready tonight and i will cook the ham and other goodies tomorrow :)

They are working their magic on my leg pain, but the headaches are a killer, I am keeping 1000 mg tylonol in me just to keep the headaches away. I also think with the cotton mouth if I drink any more liquids I will float out of here lol

Take Care,
Paula

[Lulu54]

Paula, enjoy the family Christmas - I hope it is a great day for you.  How's the effects now?  Here's hoping they are working their magic.

-L

[figuerpa]

Sumana,

Yeah ended up not going to sleep until like 4:30 this morning, made myself get up to administer the steroids cause I thought if I do them earlier then maybe I will get to sleep earlier, but who knows we will see what tonight brings.

I will get through this after all it is only a few days and the energy will do me good tomorrow cause we are having our family Christmas tomorrow and I have a lot to do to get ready for it :)

Thanks for being here for me, means alot
Paula

[Sumanadevii]

You catch me up tonight with pain....so you have company and now are headed off to bed.  I truly hope it works for you.  In my experience with monthly treatments, I just come to the board and cause uproars for the moderators...lol...I do have Ambien and on a normal night they work but when they steroid me up?  Nope.  I just stay up and forget fighting it and like you, when it will give me an hour, I take it.

In two weeks time, I am betting you will glad you did it but right now, I am sure you are doubting your own sanity...lol....You have chat friends here that get it and will listen.

Hugs,
Sumana

[figuerpa]

Ren,

Thank for the advice, believe it or not I did sleep for about an hour earlier which I thought was weird since it was my first dose of steroids, but anyway maybe if I get off the computer and turn the lights and tv off I may be able to doze off lmao.

Good Night
Take Care
paula

[rendean]

My neuro ordered Ambien for my insomnia. It helped me sleep so that I wasn't worn out AFTER the steroids because I did too much while taking them. It's kinda like a double edged sword. Your energy levels are up but then you physically wear yourself out and then are fatigued from that.

In MY experiences with steroids, after the last dose I usually slept like 20out of 24 hours and then I felt better. Others have different experiences.

I do hope yo can get some rest and the steroids kick in SOON.

Ren

[figuerpa]

Ren,

Thank you, believe it or not I did feel relief from the pain right away but it is creeping back up on me. I am sure by the end of this it will have a big impact. The metalic taste is aweful, but peppermints help alot. I will deffinately tell anyone to have plenty on hand and peppermint is an appetite suppressant (well from what I have heard lol) so that helps too.

I am going to talk to my neuro cause it is 2:30am and I am still awake, keep trying to sleep but can't, also going to mention the no taper method. What did your neuro offer fo the insomnia?

Thank you,
Paula

[rendean]

Hey Paula,

Sorry to hear that you  needed the IV steroids but most people will say that the after it is all said and done, they would do it again, just for the MS symptom/pain relief.

I've had 3 sets of 3 day steroids (neuro said with 3 days no need for the taper pack) and 1 round of the methyl prednisone  by mouth at 1000mgs at a time. I had few side effects except insomnia which was handled promptly by my neuro.

Since I didn't do a taper pack , I believe I didn't have the bloating and weight gain. The IV steroids and the p.o. (by mouth) steriods all left that nasty metallic taste in my mouth so I wasn't hungry, especially the round I had  for vertigo.

I hope all goes well for you. Stay hydrated and avoid salty and processed foods to lessen the water weight gain. Let us know if they help your leg pain...it helped mine.

Sending good thoughts your way,
Ren

[figuerpa]

Willowoman,

I am doing the steroids weight gain or not, I really don't have an appetite as of yet, guessing due to all the water I am drinking due to the cotton mouth. I will watch what I eat, but this time of year it is hard lol.

Yeah I am starting to develop a headache but just took some tylonol so hoping it helps :)

Paula

[figuerpa]

Lulu,

Yeah I have a 24 hour nurse line to call and I also have her number if need be. I like it better this way cause I felt like I was flying high after my treatment and don't think I would want to drive like that. And I am hoping it will make me better for the holidays.

Kelly,

I bet your neighbor was scared lol, My mom lives with me and my daughter lives in the same apartment complex so I have back ups lol. I hope it doesn't burn that will be sucky, but as long as this helps then I will be happy :)

The pain died down big time but is starting to come back so hoping by the end of this the pain is at a tolerable level. I am developing a headache that I reall hopes goes away.

Paula

[Willowwoman777]

As far as the weight gain, you do have some control over it by drinking lots of water and telling yourself, "It's just the steroids..I do not need more food." I only put on 1 1/2 pounds. My pcp told me he was proud of me. Problem is, I seem to hit a cerain time every day where I get very hungry. That has been just since the IV steroids. I read it can have that effect for a couple of months so I try to be very selective about "what" I eat and try to do more fruits and vegetables instead of carbs, so don't let the weight issue scare  you off something that can really help. I'm glad you are taking the meds:) Also, I did forget I got the headache the first day but I just popped a Tylenol3 and that took the edge off and didn't have another headache the rest of the time. Cool that you are doing it at home, I will be the next time if I have to do it again...

[houseofallboys]

Yea I'm glad everything is going well...I thought it was awesome too that they came out to the house...set you up...taught  you what you needed to know and then left.( because I have 3boys and driving to hospital everyday and having them sit for an hour was not going to be possible)))...I think it's pretty neat you can store the bags in the freg too....I was a pro when it was all said an done...I only had one problem...I was home with my kids and I hooked the iv steroids up so tight that I couldn't undo the line when I needed to flush it....My husband was not going to be home for a couple of hours...I finally decided to go over to my neighbors...I think I scared the snot out of them... I was Wobbling  holding a  empty bag and had  iv in my arm....ha ha ...my neighbor had to use one of those rubber jar openers to get it off...lol ....
I'm glad things are going well...just another fyi by the last day of steroids the last dose burned going in..the nurse said that it might happen since I had the line in for 5 days...

Hope things continue to go smoothly
Kelly

[Lulu54]

Paula, it always amazes me when someone writes about doing these iv's at home.  I trust she left you lots of telephone contact numbers you can use if you encounter any problem with the IV.

I hope this kicks you back into gear - hopefully the boost will get you in good shape for the holidays.

feel better,
L

[figuerpa]

Jess,

I had my first dose of steroids today :) I am ok, the taste is horrible but mints do help with that, cotton mouth suck but at least I know I won't be dehydrated. I do feel bloated but it has to be from all the liquids I am drinking lol

I have 3 more treatments and hoping they all go that smoothly, she did leave me an eppy pen in case I have a reaction to them over the next three days and I will be doing it on my own. It is neat how they have the meds in a balloon bag that just needs hooked up to the IV and let run.

She was here for like 3 hours showing me how to do everything, how to slean the IV and everything before I administer the meds. It is nice not having to go to the hospital everyday :)

Anyway the steroids must have me on overdrive cause this post is longer than I expected lol.

Oh, I did fall asleep for a little while which supprised me lol

Paula

[lovemy6monkeys]

Paula, How are you doing?

[figuerpa]

houseofallboys,

I start my iv steroids tomorrow at 9am so I will see how it affects me. Has anyone ever lost weight on steroids, that would be awesome lmao

Sumanadevii,

Thanks for the info it is always nice to hear different experiences with this. I am hoping I don't gain any weight. It is bad enough that at this point all I have to do is look at food to gain 5 pounds lol. Hoping I don't gain any weight.

Paula

[Sumanadevii]

I never gained an ounce except water weight the first week.

[houseofallboys]

I know that everyone is different but I found myself less hungry on the steroids I think that is probably opposite then most people...I too was on 96 day tapering dose of prednisone after the IV steroids..My neuro suggested to drink a warm glass of lemon water every night...that seemed to really help cut back on some of the water weight and over all bloating feeling for me..

[figuerpa]

Jess,
I like your mind set saying...i may have to borrow that one.

Well they just called me to get all my information, told me the nurse would be calling me later this afternoon to set up a time to come out here to do the treatment and to have the steroids delivered before she arrives.

Something has to make me feel better, I am hoping this is what it will take, I am not so happy that it is going to be done so close to Christmas but it is necessary so I am going with it. Besides I am doing Christmas with my my family this Saturday, I will do the 24th with my sisters so if I can't make it to that one then it will be ok :)

Wish me luck
Paula

[lovemy6monkeys]

Paula,

I did 3 days of IV steroids, and 21 days of the prednisone taper. Then barely 1 week after taking the last prednisone pill, I started the second round (for another issue).

BUT, it helped! And by the 3rd day of steriods I felt much better. I know I will not run for steroids for every every thing that pops up (I've had a vibration feeling in my hand that is slowly progressing, but it is just annoying and not interfering with my daily routine too much, so I'm ignoring it for now) but if the vertigo comes back as bad as it was the first time, I'll be camped out at my neuros asking for him to "hook me up" LOL

My mindset lately is: If I can ignore it, I'm going to ignore it. If I can't ignore it, I'm going to treat it!

Good luck!
~Jess

[figuerpa]

Jess,

Wow that almost makes me not want to get the IV steroids. Gaining 10 pound is not something I need, I am big enough as it is. How long did you get the treatment to gain the 10 pounds.

The headaches don't sound fun either, the lack of sleep part might be good since all I seem to do now is sleep lol but we will see, if it is too much for me then I won't do it again.

Hoping all goes well and that I decide to go through with this.

Paula