Beginner's Guide to MS: Solumedrol, It's All The Rage!!

Abby,

I'm so sorry to hear that you might be on the juice again soon.  But good for you for getting into the MS Clinic.  I have high hopes that you'll get the attention and treatment you deserve.  Inattentive doctors - Aargh!!

The first time I did steroids, it was oral Prednisone - 1000mg for 3 days plus taper.  I would NEVER recommend that to anyone.  It was a horrible, horrible, bad, bad experience.

Five years later when I did my first round of IVSM with Prednisone taper, it was really not very pleasant.  I was out basically for three weeks before I really could start to function again.  Prednisone = bad. 

But afterwards I thought to myself, "Ok, if I only have to do that every five years, then I suppose I can handle it."  Haha.  Six months later, back on the drip.  This time with a Decadron taper.  Ah, much better.

Knowing what to expect helps me the most.  Knowing that I'm going to be a blob who can't sleep or think makes dealing with it easier.  The most recent round I did was before Spring break.  This was good timing since it's the first week after the IVSM that I'm my worst.

Again, knowing what to expect makes the ride somewhat smoother.  Good luck with the new doctor.

Lisa

Hi Candy,

It's so validating to know that others experience many of the same things.  I don't think that my face gets red, but I do know that we watch my bloodpressure closely during infusions. 

In fact, I usually get a little cold sitting there for so long.  Last time around the nurse brought me the heating pad to place under the blanket.  Aw, that was nice.

Thanks for reading and commenting. I appreciate it.

Hiya Queen,

I think this must have been dexamethasone (aka Decadron).  Although I've never used it intravenously, I have used the oral form during the oral taper.  It is so much easier on my system than Prednisone.

Kinda funny.  My neurologist is surprised because he says that more people do better with Prednisone and not as well with Decadron.  I reserve the right to be different. 

I do know that oral Decadron is about 5x stronger than oral Prednisone.  Maybe you got off easy with a lower dose (lol, as if any of these dosages could be considered lower) and only had half strength infusion.

In any case, you know what to ask for next time if necessary.  I'll have to ask my neuro about the difference in the IV solutions sometime.  I'd much rather be hosting tea parties than emotional rollercoasters.

Ahhh... that WAS it. I recall asking the nurse why I was only getting 100, not 1000, and she did say it was stronger than Solumedrol. Plus, I got hit four times a day with the Solumedrol, only three with the D. I had no idea there was an alternative to Prednisone, I will ask for that next time.

Hi Emily,

It's funny that you mention sounds.  Occasionally, sounds drive me crazy.  What will be a teeny-tiny, nobody-else-can-hear-it sound is so loud that I want to strangle the source.  Good thing that folks around me understand the situation and just calmly let me be.

But you know what, I think that the double chocolate donut and cappuccino should be regular treatments for many different things.  Hmmmm, now I think I need some chocolate.

Julie,

I've done the IV route three times so far and one time with all oral Prednisone (mentioned above in a comment).  Personally, the oral prednisone was very difficult but that's probably due to the steroid of choice at the time and not the method of use.

I've never heard of mixing Solumedrol into a drink and taking it that way.  I have heard of injecting it into muscles however.  Did you experience the other steroid related side-effects?  I'm curious.

So sorry that the nurse didn't get a good line in on the first day which latest throughout the round of treatment.  I've always babied the IV line so that wouldn't happen, but I know that it does happen to other folks cause the nurse always praises me when we make it to the end with only one needle. 

It's nice to learn that there are other options for folks.  There's also another drug which can be self-injected into the muscles, Acthar Gel.  But with a drastic price increase last year, the 2 vials which it takes to complete the round can cost $50,000.  Insane!!!

Thanks for educating me a little. 

I'm so glad that you enjoyed the post Lauren.  Thank You!!

I'm a nurse with MS so I don't mind infusing myself, in fact I prefer infusing at home for a couple of reasons. I don't have to drive to the clinic. I pick the exact time I'm ready to infuse. I can get comfortable in bed or on the couch with a blanket or pillows and just relax. This relaxed atomosphere helps me get in touch with the benefits of why I'm infusing this drug in to my body. It may sound funny, but when that metal taste comes I get a mental picture in my head. I see the medication entering every lesion, calming them down. After the infusion I can lay back and relax even more. Just resting and letting the drug do it's thing. All of this really helps me make the best of it. Johnny

Hi Johnny, you make it sound like such a Zen experience.

Are you able to get the IV started on yourself?  If so, I'm sincerely impressed.

I wouldn't mind flushing the line and all that stuff.  But I'm fortunate, my neurologist's office is only about 10 minutes from my house.  And if you look at my response to Jughead (just left it), I am usually already at the neuro's office when the call for IVSM is made.  Very convenient.

Sounds like you've gone the routine down.  Thanks for your comment.

Hi Lynn,

A one handed IV start would be something.  No, I leave that to the real professionals.

Actually I try the Zen thing to keep me from bouncing off the ceiling from the drug rush.   Just finished my third gram yesterday so I'm still holding on to the anticipated good outcome in a week or so when I usually get the positive results of feeling better.

Hey Jughead,

Good to see you here (sorry it took so long for me to answer - off topic, I finally have heat at home, yippee).

It's funny.  This is what usually happens when I've got to do the IVSM.  I call the MS nurse and she asks, "how are you?  so what's up?"  Then I describe what had been brewing for a week or so.  After much more discussion, she says, "well, I think you need to come in and be seen."  Me - yeah, that's what I thought.

Then I get an appointment for the next morning.  See the neurologist or his assistant who says, "well.... I think we need to do a round of steroids.  Do you have any place to be right now?"  Me - nope, I even brought the book cause I just KNEW you were going to say that.  Then I walk down the hall to the infusion center and get started.

See..."they" never let me leave (lol) before juicing me up.  I've never been offered the choice of doing it at home. 

Melissa,

Thank you for the chocolate milk suggestion.  I've personally used the Jolly Ranchers or LifeSaver mints.  I wonder if chocolate soy milk works as well.

I hope that this round of Solumedrol goes more smoothly for you.  Just knowing what to expect has helped me cope with it better.  And I hope that Copaxone works for you.  It is the drug I use and seems to be doing a good job.

Now get some rest.

Lisa, thanks. It is good to talk to others about all of our experiences. It's hard to explain to people that can't sometimes see a "visual" of what we experience. From what my nurse at the infusion clinic has told me, the chocolate itself masks the bitterness. I'm sure the chocolate soy would be just as good. I usually get the Nestle Quik chocolate milk in the bottle, like I had as a kid. You take care and hope you co well.

Thanks for chatting with me,

Melissa