Going for 3 Day Solumedrol....Any Advice?
 

I'm in the midst of a pretty severe flare up so I will be getting a 3 day course of Solumedrol starting tomorrow.

I have managed to avoid IV steroids so far but this flare up is affecting my walking and balance quite severely so I'm going to give them a try.

Does anyone have any advice or suggestions of what I can do to make the experience better.....or not as bad.......or really just any words of wisdom from someone who's had an experience with IV steroids. What should I expect? :confused:

Dear Kitty, I'm sorry you're dealing with this right now.
No advice from me except to say that I hope you find that it has a positive outcome. :hug:
Feel better soon.

Good luck Kitty. :hug: There should be MSers here to help you.
You might search "solumedrol" and see what was posted in the past.

i've not taken any but i wish you luck and pray for a good remission.

They worked tremendously for me! I had them for 5 days (1g IVSM per day) along with Lemtrada. By day 3 my walking was notably better, by day 5 I needed just a cane (not my walker) and I'm still walking unassisted since about 1 week post-infusions. It could be the Lemtrada working now too at one month post, but it's mostly steroids I think.

3 days should be enough to kick the flare up in the rear without a lot of the other steroid side effects.

You might expect some extra energy but try not to overdo it. Also, your appetite might increase. It has been a long time since I've had the steroids but I'm hoping it will help you get back to normal. :)

Take some mints along with you to suck on while you get the infusions. You tend to get a metallic taste in your mouth.

Drink water. Get some mints. Take a nice book to read, or take a nap.

Last time I had steroids was pre-iPad days. I took a netbook computer, and a Kindle with me to play with. (I might have had my 1st generation Kindle Fire with me too. I took a lot of toys with me).

You *might* want to ask for an oral steroid taper after you're done with the 3 days of IVSM. I didn't like the steroid crash that I had the very first time I had IVSM. That was not cool.

Thanks for all the suggestions. I have some Altoids to take! I need to ask my son to pick up some Zantac for me in case I get heartburn. Or maybe some Tums.

My Neuro has also ordered an MRI of my brain. I should be getting that at the hospital, too. Also some blood work so I'm going to request that be done at the hospital, too. Might as well get it all done at one place.

My DIL is picking me up around 1 PM and I'll get to see my sweet granddaughters!! They will be a good distraction for me on the way to the hospital. :)

It worked out beautifully that two of the days I'll need a ride to the hospital are weekend days. They said I could just come in whenever I wanted to.

Erin, I think I'll probably take a nap during my infusion. Seems like the minute I sit down and get still I fall asleep. :rolleyes: Maybe they will have TV on with something good to watch....or something to put me right to sleep!

This flareup is almost like the one I had in 2008 when my sister passed away, I had a house full of company and had a flareup that I'm sure was caused by stress. It felt like I was walking on tennis balls and my legs were heavy.

This flare up today makes my legs feel like they weight 100 pounds each. I can barely pick my feet up and while I'm at home I wear socks and just slide around the wood floors. I figure I'm at least cleaning them when I walk that way! :p

I'm sorry you are having a nasty flare. I hope the IVSM works for you and you start feeling better soon.

In addition to the mints, lemon drops are good as well. I've also brought lemon water with me to drink. It seems to help with the metallic taste.

Drink plenty of water and other fluids throughout the day(s) to keep hydrated.

For me, IVSM makes me feel really tired and sick feeling. I do not get the energy bursts that others seem to get. Have some books or magazines and other "quiet" things to do at home just in case you get the same reaction.

Zantac is a good idea. It will help with any GI symptoms you may get.

Let us know how it goes and how you are doing.:hug:

Sorry to hear you are in a flare. :(

I have never had IVSM so I can't be of any help with that.

I hope it goes well and you are on the mend soon! :hug:

my legs feel exactly the same way right now. Heavy, and not playing well with the rest of me at the moment. I'm starting to wonder if it has something to do with the pain in the middle of my back that I've had the past few weeks. (right at waist level, where waistband of my jeans go. Right on the spine)

And the sneaky fatigue. I hate when I sit down to do something, and all of a sudden, I can feel myself falling asleep, sitting straight up. I've had to start sitting my chair further away from my desk. I've had a couple of near misses with the Corian desktop when I've fallen asleep, and nearly faceplanted my nose into the corner edge of the desktop.

I like apple flavored candy when I'm getting IVSM. Oh, and this probably isn't the thing to eat while on steroids, but I like Greek food, usually gyros, with garlicky tzatziki sauce. Something about the garlic in the tzatziki sauce kills the taste of the steroids for me.

Well, it wasn't too terribly bad. They left the IV in because I'll be back in the morning at 9AM and on Sunday at 8 AM.

I have the metallic taste already. I felt sort of queasy when I got home so I ate some saltines and that seemed to help.

The nurses at the infusion center were real nice. The nurse who took care of me was a riot. I asked her if I could use my cell phone while in the room getting the infusion and she said "Of course honey! You're not in prison!" Okay then............:D.

My cats are having fun sniffing the bandage covering my arm. I'll have to figure out how to keep it dry in the shower.

Erin, do you think you might have a UTI? That can cause all sorts of havoc with symptoms.

It's not in the same place as where I get the weird sensations during a uti. This is actually pain on the spine, with a spot of numbness that radiates out. It might just be from sleeping in my computer chair when the sneaky fatigue sneaks up.

But, I'm always on the lookout for a uti. They are the bane of my existence, and usually the cause of most of my MS problems.

Well, day 2 was uneventful. I've noticed that the numbness in my right hand has gotten less severe and today I can even write somewhat legibly. I had not even thought about that getting any better but I'll take what I can get.

How long do the effects from IVSM last after the 3 day course is finished?

So far this has been a positive experience. I even enjoy visiting with the nurses at the infusion center. :)

Today is day 3....last day!! :)

I can definitely tell a difference. I didn't go to bed until 1 AM and here it is 5 AM and I'm UP!! :D Oh well, no big deal. I'll nap later if I need it.

I keep telling myself that I'm just feeling better because I know I'm "supposed" to and it's just a placebo effect but I can really tell there is more strength in my legs and I'm walking better. Noting miraculous but it was so bad a week ago there is definitely a difference today.

I hope this lasts for a long while. I could get used to this!! ;)

Hope it lasts for you too.

Last time I had steroids for something that was not vision related, it didn't work. (usually only take steroids for vision related MS stuff)

The one time I tried steroids for a non-vision thing, it was when my hands went numb in 2012. Movement of my fingers was weird then too. Steroids didn't seem to do a thing for it. My hands are still numb. I created my own PT for it. I crocheted, knitted, and did typing tests on the internet to try to help any movement issues, and keep my hands moving. That seemed to help some.

I did have some cortisone shots in my shoulder last year for the not-MS-related frozen shoulder, and was told that wouldn't do anything for the MS. It did seem to help my energy for awhile, and it helped the pain in the shoulder from the frozen shoulder.

I've been having a lot more issues lately with walking. I'm about to contact my neuro and see if he'll Rx some steroids, or a round of IVSM, or I'm going to switch neuros. Just afraid to switch neuros, because they'll probably want an MRI, and I'm claustrophobic and don't want to crawl into a tube where it'll be uncomfortable, and I'll end up emotionally traumatized from the claustrophobia AND be in pain from not moving.

I'm supposed to have an MRI but they are waiting for the authorization from Humana and I think the weekend timing of all this is slowing it down. I was really hoping to be able to get the MRI while at the hospital already receiving the IVSM. That's not going to happen, though.

The IVSM seems to be helping the numbness in my right hand a little bit. I can write better....or at least legibly....so that's a positive.

The grandbabies were over yesterday and they both zoomed in on the bandage covering the IV on my arm so that was interesting trying to get them to leave it alone! :D They don't miss anything new.

you don't really want to be in an MRI machine while hooked up to a steroid infusion. Depending on how long you'd be in the machine. I only say this because IVSM makes me have to go potty very very very often.

I noticed I'm going a lot, too. I was hoping it was just from the IVSM and not another UTI coming on. Hopefully this will help with curbing any UTI's from coming back. I think I set a record for having them this past year. :rolleyes:

I go to the Neuro tomorrow and have a few questions for him....like how long the effects from the IVSM will last and when it kicks in. I'm thinking someone told me or I read it somewhere that you feel a little worse before things get better.

I'm hoping I can get some sleep tonight. There's a great show on PBS tonight playing all the hits from the 70's and 80's and I'm really enjoying the trip back in time. These are all the hits I remember from high school.

If you're drinking the water that was suggested, and on the steroids. That's probably the main reason for frequent potty breaks. But this is good. It keeps your kidneys nice and hydrated, and healthy while on the steroids. Steroids are rough on the body. You need the fluids.

Really? Bed at midnight and up at 3 AM!! The cats are loving it but I'm afraid this lack of sleep is going to be my downfall. At least i can nap during the day if I feel the need. I'm really trying to just take it easy and not give in to the energy rush that usually follows the IVSM. My seasonal allergies are acting up so I'm sure that's part of the reason I can't seem to sleep for very long at a time.

Ah, Kelly...wish I'd been on here when you had your questions beforehand.

I had an IVSM last month. One thing my neuro told me was to keep sodium intake below 2500mg/day, as you retain water with solumedrol. It's tricky, because lots of processed food has loads of sodium.

My sxs were reduced all of 6 days before they returned after the infusion:( I don't know why, but this always happens for me.

As for the lack of sleep, it is temporary...try to drink some relaxing tea before bed, and read something boring. if you awaken during the night, I would suggest not lying there waiting to fall back to sleep. Get up and read or do something boring like watch the weather channel. Always works for me:D

I hope that your sxs keep getting kicked down for a long time:hug:

I got a prescription for a taper of Prednisone so I'll be taking that the next few days. I don't feel like I need it but I'm afraid if I don't take it I'll be sorry.

Kelly, I just saw this post so it is to late to give you any advice. I have only had IVSM once and it was for five days. I could only sleep for four hour for several weeks after getting the infusions. I did not really get any quick relief and my neurologist suggested that was because I did not get them more quickly after having my first major flare.

I actually lost my appetite and lost almost 50 pounds in the weeks following my infusion. That was the only benefit:rolleyes: One thing that I realized in retrospect is that steroids increase my heart rate by quite a bit. This has happened when I have been on oral steroids and have had steroid injections too. I always have weird reactions to meds.

Hope you get some more relief.

I wish I had better news to report. :( I got up yesterday to the worst case of lightheadedness I've ever experienced. It felt like I was walking on a floor that was also moving. Weird............

I called the neuro to see if maybe it was because of the Prednisone taper I was on.....because the 3 days I was getting IVSM I didn't feel like this at all.

They said no it was the flareup and the neuro suggested another 3 day round of IVSM!! Can that be done??? Wouldn't that be way too much in such a short time?

We decided that I would finish the taper and scheduled an MRI. I'm not taking any DMD right now since I had that awful reaction to the Tecfidera. I'm wondering if he will want me to try the Tec again?

How long does it take for the benefits of the IVSM to kick in? I thought it was immediate but maybe it's not.

Who here thinks I should go for another round of IVSM? :confused:

Going back today for my MRI. After that I start another 3 day IVSM infusion. :eek:

After the infusion I have a 15 day taper dose!!I have never heard of a 15 day taper but I guess I will find out what that's like! :rolleyes:

I have never felt so disabled as I do now. I know it will get better but I just hate this feeling. Honestly, my legs feel like cement blocks.

I am keeping Poise in business and think I should probably buy stock in the company.......:thud:

Had the brain MRI today and then my first of three IVSM infusions.

The MRI was very different fro what I'm used to. The technician said it was a newer and more powerful machine. It was definitely louder than any other I've been in. I almost jumped off the table once! :o

Hoping this new dosage of IVSM works. The same group of nurses were there today. We had fun watching Judge Judy this afternoon. :)

Kitty, yes that happened to me once. Isn't pretty but the second 3 day worked. My veins were terrible but it worked.

It's working!! :)

I feel so much better. The leg weakness is nearly gone. Yesterday I walked (with my rollator) from the hospital entrance all the way back to the Outpatient Center for my infusion.

I had my MRI on Thursday and the nurse called me yesterday with the results. No new or active lesions. :confused: She said the first round of steroids probably took down the inflammation a lot so anything active was probably not noticeable. But obviously there was something going on. Just glad it's resolved itself.

I'm fairly certain that the Neuro will suggest Tysabri to me now. And I will gladly accept it. Even the nurses in the infusion center tell me they have numerous patients that come in for that med and they are all doing so much better on it.

Today is my last infusion...oldest DS is coming over to give me a ride and make a grocery store run for me. The weather here is turning HOT this weekend so I'm very thankful I don't have to be out in it after today.