My 3 Day Steroid Treatment for MS - Part 2

Recap of my First Infusion

This is the second part of a series about my latest 3 day Solu-Medrol infusion. If you missed Part 1 you can read it now. It is my deepest desire that a blow-by-blow account of the therapy, will demystify it for anyone new to the infusion process. While every one's infusion might not be the same, the basic guidelines are followed for all home infusions. Of course, as stated previously, your very first infusion will have to take place in a out-patient or hospital setting, to determine your tolerance of the steroids and to monitor your sugar levels.

Today, I will review the procedure my nurse followed and discuss the actual set-up of the infusion. I will conclude with side effects felt and how long it took me to get to sleep.

Reuniting With My Nurse

Yesterday's infusion started off very well. Seeing my old nurse and friend was very enjoyable. We hugged and laughed and caught up briefly on our lives since we last saw one another 4 or 5 years ago. I was so glad she was still available to help me. She was surprised I requested her by name, wondering which of her patients wanted her back. She said when she found out it was me, she was happy about it.

She arrived at my home about 1:30 pm, within the time frame she gave me. I love her punctuality, the sign of a true professional. After the small talk was concluded, she asked for details about this current relapse. She then asked why I waited so long to get help. I told her I was hoping I just needed to give me body more time, and she said she understood.

She mentioned she understood why I didn't want to start back on Copaxone as she wouldn't want to have to inject herself everyday either. See why I love this woman? She knows how to empathize without being condescending. She agreed that I lasted a long time without taking any of the injectables and hoped that going back on Copaxone would get me back to where I want to be, especially after the steroids have a chance to kick in.

From that conversation we went to the dreaded needle insertion.

Setting-Up the IV

Even though it has been quite some time, she remembered not only my strange acting vein, it has wiggled unexpected, just as the needle is being inserted. Making it harder for her to thread in the IV line. She also remembered my relaxation readiness drill. Once she does the alcohol swipe, I nervously state, "OK, wait a minute, wait a minute, let me look away and get myself relaxed!" She smirks, "Alright, look away and relax . . . are you ready?" "Yeah, I'm ready now." "A little pinch" she says. And amazingly, the needle was in. I shockingly proclaimed, "we're done?" "Yep" she says, "that's it" It was one of the smoothest insertions I've had in quite some time. I guess there's some good that comes out of not needing an IV on a more regular basis - your veins have time to heal. Of course, although relatively painless, my vein had to show off just a little bit and decided not to stop bleeding. It wasn't a gusher, just enough blood to irritate my nurse. She got it under control though, no vein was going to make her have to reinsert another needle. With the bleeding stopped, she taped the line down, fit the sleeve over it and we proceeded to the next step. What's called using the SASH Method of training.

SASH

SASH stands for the order I follow in administering the IV.

  1. Inject the saline solution into my line to cleanse the tubing.
  2. Hook-up the medication or antibiotic to the tubing.
  3. After the Solu-Medrol is finished, unhook the ball device
  4. Flush the line with Hebron so that the blood doesn't clot

It only takes 90 minutes for the IV to run, it takes a couple of minutes to unhook everything and apply the Hebron and then you are all done until the next infusion. You just have to make sure to keep the line safe and secure by tucking it into the sleeve you are given.

I have the line put in my left hand since I am right-handed. My healthiest vein is located right below my wrist, so it is not in the way. The sleeve gets a little itchy especially when the weather is hot, but nothing that is so annoying it can't be tolerated.

I show special concern when sleeping, as I don't want to dislodge the IV line, but since I'm sleeping that long a period of time, it is an easy precaution to follow. I don't sleep on my left side until the treatment is over.

I am in love with this new infusion system. The Solu-Medrol ball needs nothing. You can easily carry it in your pocket while doing other things.
I am in love with this new infusion system. The Solu-Medrol ball needs nothing. You can easily carry it in your pocket while doing other things.

The Solu-Medrol Ball

This method of the delivery is the greatest thing since sliced bread, wheat not white bread. I was happy there was someone who put a picture of it on google so that I could show it to you. As you can see, no poles or necessary, you just hook it to the line in your arm and you are good to go. Want to do some chores, or run to the store? No problem, it is small enough to slip in your pocket or your purse and take it with you.

It works on pressurized power and has a unique look to it. As you can see it is clear, but upon closer examination it actually has two bladder type containers. The outer container is made of durable plastic that cannot be punctured. Then there is an inner bladder which actually carries the Solu into your line. As the Solu is delivered that inner bladder collapses on itself. By the time the IV is finished you can see it has all been discharged and the inner bladder is empty.

I don't know if you use the home transfusion method or not, but if you do, I highly recommend asking for the solu ball instead of the infusion bag. It makes life much easier.

First Day Side Effects

As first days go, the side effects weren't bad at all. That annoying metallic taste kicks in about 20 minutes into the infusion. Always a pleasure. For me it slowly decreases in about 6-8 hours.

The IV didn't begin until a little after 1:30, so the taste lasted into the evening hours. However with an earlier start, comes an earlier disappearance of the taste.

Almost immediately, even with the nasty taste in my mouth, I found my self starving. So the overwhelming desire to eat everything in sight, was my constant companion for the rest of the day.

I noticed a few heart palpitations, nothing really scary, just enough to get my attention. I commented on it to my husband, and he told me it wasn't any wonder considering all the steroids hitting my system. One thousand milligrams is a lot, even when it is condensed into a small circular object. Oh and a very slight headache at times as well.

Bladder Voiding seemed to occur rather quickly as well. I guess your body just wants to empty out all the toxins as soon as possible. Or maybe it is just that 1,000 milligrams of any thing will make your bladder just a tad full.

Insomnia of course becomes evident when it is your normal bedtime. I was up for 20 straight hours. Finally around 1:00 am this morning, I thought I just might be tired enough to begin my wind down procedure. I took 1-1/2 of my normal sleeping pill dosage, turned on my MP3 player and around 2:00 am I finally fell asleep. I was awake by 6:00 am, only 4 hours of sleep, but it was four quality hours, so didn't feel unusually tired.


Another Experience of Solu-Medrol Use

Day 1 Concluded

This concludes day one and Part 2 of my 3 day steroid odyssey. Tomorrow, I will report on how my steroid infusion beginning this morning and ending with my ability to sleep tonight, ended. I'll take note of any thing strange and any side effects.

So far so good though. I hope it continues!




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12 comments

Darvon Lawsuit 5 years ago

Dearest Jen,

While i was reading your article here, i mean your personal experience about this treatment, i was placing my self in your shoe. It feels good and challenging. Looking forward for your next hub. Take care always.


LovelyLady01 5 years ago

I will start my first treatment on Saturday, I hope it goes well I'm a little scared so PRAY for me.


Jen's Solitude profile image

Jen's Solitude 7 years ago from Delaware Author

Hi christina, Well you are officially the first person I've ever met that drinks the stuff. I can't even imagine what the liquid form must taste like.

How much do you have to drink and how often during the day?

I'm glad it helps, it just ought to, when you have to drink it, eh?

Thanks for dropping by and leaving a comment.

Jen


christina 7 years ago

Yep ive been on it! it sucks!!! I am on the liquid form now that you drink nassssssty and the sweating is awful. It also makes your skin stink!!! Its the worst crap out there but does help!!!


Jen's Solitude profile image

Jen's Solitude 7 years ago from Delaware Author

Hi again Useful Knowledge,

I didn't know catscans leave a metallic taste too. Yes it is horrible, but you quickly realize when it comes to steroids, its the least of your problems when it comes to the side effects. LOL

I am feeling better and stronger, especially now that the needles aren't as difficult to take. Stressed myself out over that and had a bout of fatigue as a result. But my energy is returning now and I'm looking forward to driving for the first time in months tomorrow. Small progress but happy to have it!

Thanks again for your comment.

~Jen


Useful Knowledge 7 years ago

Jen, I read this hub following the first one. I have had that metallic taste before when they did a catscan on me. It only lasted briefly, but was horrible. I hope you are feeling better now.


Jen's Solitude profile image

Jen's Solitude 7 years ago from Delaware Author

Hey Violet, I'm glad we found each other too. You are doing so good with your lifestyle changes, I would be surprised if you needed steroids any time soon. I can't remember if you mentioned how long you've had MS, but seems like until you get close to the 10-15 year mark, or unless you have any new lesions pop up out of the blue, you should be good to go.

And even if you have a flare, they will usually go away on their own unless a lesion hits in a complicated part of your brain or spine. So steroids still wouldn't be necessary, you could just chose to ride it out. That was my plan, but you know what they say, it's good to be able to walk. :D

Thanks for dropping by and leaving a comment.


Violet Valerie profile image

Violet Valerie 7 years ago from Westminster, Colorado

So happy you found me on here so I can keep up with your journey as well. It has been a while since I have had to do steroids (a little over 2 1/2 years), but it is good for me to keep up on my options. Though I am, of course, hoping that the life changes I have made and the reduction of stress that goes along with them will keep me free from a flare!


Jen's Solitude profile image

Jen's Solitude 7 years ago from Delaware Author

Hey there Connie, I've been thinking about you these past couple of days, sure is good to read your post. ;) I'll e-mail you soon. My problem is remembering to check my mail. Maybe these steroids will help with that type of cognitive issue. My mom was given solu-medrol while she was in the hospital too. Its used quite frequently although not at such high dosages as we MSers have to receive. For tomorrow I wrote myself a list of all the things I forgot to include with today's article. Like sweating. Don't know how I forgot it, probably because it doesn't kick in immediately. But that along with a couple of other side effects will be on tomorrows list.

Look forward to e-mailing you as soon as possible. I'm now officially all hyped up and trying to relax while at the same time my mind is racing with everything I could be doing. LOL Feels good to feel good, that is for sure! I hope my husband has his ear plugs ready to go, cause I feel like TALKING A lot!! :D


Connie Smith profile image

Connie Smith 7 years ago from Tampa Bay, Florida

These articles are very informative, Jen. Through them all, (I read part 1 and 2 and the Solu-Medrol one), I just felt so much compassion that you have to go through all this. I had my share of steroid shots (4 or 5) this past winter and I am pretty sure that the doctor called them Solu-Medrol, so I knew a bit about what you were writing about. I can't sleep for days after one of those shots and I feel a bit like I'm going crazy. I also had some arrhythmia with it that can be scary, not to mention those hot flashes. I hope this flare doesn't last too long and that you can get back off of the Copaxone without it affecting you too much at some point. I know I would have a hard time self injecting. Email when you feel better. As always, I admire your courage in putting yourself out there to help others cope with MS.


Jen's Solitude profile image

Jen's Solitude 7 years ago from Delaware Author

Have a productive day and thanks for taking out time to post a comment, I appreciate it! :)

~Jen


dawei888 profile image

dawei888 7 years ago

Thanks for posting jen - i'm going through all my sites and re-doing some stuff so no hubpage contributions for me today. hope u'r feeling better! -dawei888

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