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.
Well I had a 5 day dose of IV steroids and let me just say I was like super women....The first 2 days I was on serious over drive ...I really probably should of asked for some type of sleeping aide ...I did take two Benadryl pills and drank a cold beer every night to make me sleepy I know probably not the best combo but I needed some sleep ...and still some nights I was wide awake...I just remember after the bowl of Iv Steroids was done running everything turns really white and almost glowing ..that goes away pretty quickly and the metal taste.......I felt really good on them ..I thought wow I could repaint my house lol I didnt of course but I felt like it...
This is just my experience I'm sure others will have different experiences on them
wow I hope I feel like superwoman lol. I have wanted to do nothing but sleep, I take my meds and that makes me even more tired. the provigil is not working at the moment, the pain is to an extreme limit. I hope the steroids help with this relapse, I know they are only to help with the inflammation but I am really hope I feel better after this.
Wishing you the best....My symptoms did not go away but it definitely knock them down...I stoped drunking walking...my gait was still wobble but I was not running into walls..that was the first time in over two months...I guess I felt good on them because I felt like all my crazy friends became more manageable..I think my husband wanted to strangle me ( just kidding ) I was drying him nuts...I had a lot of energy .....talking alot ha ha
I'm sending good vibes your way.....
Keep us updated and I hope you find some relief because girl you deserve it///
Yeah I am beginning to wonder if I will ever be without another new symptom or worsening symptom. This is getting to be too much for me to deal with, that is why I am not on here as much as I use to be. It is one thing after another with me.
I guess it is good that my man works out of town so that he won't have to deal with me while I am going through the treatment.
I just want some time where I feel normal again, well maybe not normal but my normal, you know what I mean right?
I am so sorry that you are going through all of this. I know its hard to get through days when you have pain and fatigue. I hope you start feeling better when you start the steroids.
My best to you Paula,
I know exactly how you feel about feeling normal again ...I was little down today still not dx with anything but my neuro says clinically MS but will not dx because of no lesion ....which is fine with me as long as treats me when I need it...a lot of my symptoms have died down except for my leg tremors and muscles twitching...I'm use to those and figured o well things could be a lot worse ...but the last couple of days my foot has been going numb.. I hope this is not start of new relapse and things get crazy again ....I told my husband I don't think I will ever get back to my old self I will just have to get use to my new normal...Hang in there
You don't say how many treatments they will be administering. My suggestion is to drink a lot of fluid...as much as you can. My first round was five treatments. I had cotton mouth which feels like cobwebs in your mouth. A yucky feeling. Also you may retain water the first week or so.
I saw some relief after my second treatment. You may, too. If the symptoms are caused by inflammation it is more likely to see some immediate relief. I am on a monthly schedule with them. I am slowly seeing improvements. Since starting them (In July), I am probably 40% better than when I walked (err rode) into my neuro's office. At that time I could not even hold my neck up. So I am very pleased with how things are progressing.
I just had the iv steroids the first week of December. Major thing I learned was to bring mints with me to suck on during the infusion because you get a rotten taste in your mouth. Keep them handy because it carries on for several hours. I had the first infusion and didn't sleep for 36 hours, then took one of my meclizine and slept 9 hours. For me? The blood sugar was an issue, but it normalized after about 5 days after the last infusion. Make sure you eat some bananas, baked potatoes and such cause your potassium can drop. I figured that one out the hard way after the first round. I ate my bananas and potatoes this time and there was a definite difference. I did get a little crabby ( my family might say alot crabby), but all in all it wasn't all that bad. My dr doesn't taper so I go through a steroid "crash" started about a day and a half after the last infusion. That was kind of like having the flu and I wound up with thrush for a few days and used swish N swallow - no biggie. In other words, I don't find the IV soluMedrol that bad. Will I do it again? Maybe, but not for at least a year.
thanks for the warm wishes, I just want to make all of this dissapear, but since that is not likely I just want to fell good again. It stinks this all has to happen with Christmas so close.
I have accepted my new normal, but this is definately not it lol. I will make it through this just like I have everything else :) positive thoughts, positive thoughts lol
I am going to do a 5 day treatment, I am lucky cause they are sending a nurse to my house to do the treatment so if I do feel yucky at least I will already be home. I retain water all the time, I have lasiks for that so I should be ok there.
Yeah I have heard about the metalic taste that you can get in your mouth, I will definately have mints on hand :). I don't know what I would do if I didn't sleep for 36 hours, I sleep all the time so that would be a deffinate change for me lol. Will make a trip to the store for bananas, I have to eat them when I take my lasiks anyway guess I will be doubling up on them for the duration of the treatment. I am pretty sure he is going to do the prednisone taper. He better, Christmas is next week and I don't want to crash.
Thank you all for your wonderful advice and what telling me what it was like for you, this is my first round of IV steroids and hoping my last.
I have had IV steroids (w/ the prednisone taper) twice, pretty much back to back. The worst side effects for me:
*Bad headache during the IV steroid days. They gave me a med in the IV one day, but it did not work as well as Tylenol Headache, so I just stuck with the Tylenol.
* I gained 10 pounds even though I was careful to not eat as much as I wanted to eat.
* I was cranky and emotional (though my DH assured me I was acting fine, inside I just wanted to scream a lot)
* I did not sleep! Part of the meds my neuro gives, he includes an antianxiety med that will "bring you down" from the ramped up steroid feeling. I took that before bed, and I assume it only stays in your system for 4 hours, because no matter what time I went to bed, I popped awake 4 hours later....and I mean wide awake! I was usually awake for the day anytime between 2:30 and 4am, depending on how late I stayed up that night. My house was cleaner than it ever was, and I know the kids love the hot fresh made breakfasts...but I was not happy.
*The effects, especially the not sleeping one, stayed with me for about 3 weeks after I took my last prednisone pill.
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!
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 :)
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..
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
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.
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
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...
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...
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.
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.
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 :)
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.
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?
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.
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.
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.
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 :)
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
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.
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! :)
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
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