High dose IV Solumedrol therapy and results

[Dawn42]

Hi Shanna
I felt the same way this time taking steroids-just to walk around the house was difficult, but it did go away after a week or so. From what I understand, steroids may or may not work and how you did with one round doesn't really affect how you will do the next time. Sometimes they work, sometimes they don't, and it is not always immediate. Hopefully you will start to see some improvement.

I have tried to explain to the neuro how badly steroids make me feel, and although he is kind, I don't think he has a clue as to how bad it can be. However, there aren't a lot of options available for a relapse so there is a limit to what he offer. Hang in there.

[LisaL77]

On Day 2. Yuck. Gross taste in my mouth. Sooooo tired. Dizzy. Headache. Gained 2 lbs in fluids. More frequent bathroom visits. Everything hurts, even my fingernails. Tummyache.

Had an unexpected problem with the catheter. She had to use a very small IV needle (small veins). Today she pulled it out as it was not working. We used a butterfly in the elbow.

Hoping for the best, however. Also, taking the next days off through the end of Day 5.

[ShannaB]

Hi Dawn,

Thanks for the reassurance. I am actually starting to feel some "pins & needles" in my feet today. So that has helped me to not get discouraged. I just have to be patient and hope that it improves as the days go by. I can't imagine how weird it will feel if the sensation of pins & needles moves its way up my body like the numbness did in the beginning.

Lisa - try to hang in there. Steroids are not the most fun thing in the world. I always try to look at it as a new adventure in food! The one thing that I found was really good after a treatment for the nasty taste in your mouth was a Cherry Limeade from Taco Bell. I also take a lot of lemon drops with me to help while I am getting the treatment. I took the time off work as well, that way I wasn't stressed at night if I couldn't sleep. I have read that
that it helps to start the treatment with food in your belly. It is supposed to help with the queasy stomach. I was lucky and didn't have too many bad side effects with this time around. Hang in there! Hopefully the end result will have been worth it!

[LisaL77]

Shanna, thanks. I'm on Day 4, very tired and a little nauseous and dizzy but looking forward to the upside of this treatment.

[FL_Jhawk]

I mentioned a few days ago I was going to have my second Solumedrol treatment and I would report back, so here it is.

First, over the weekend, I work on some mechanical things around the house and may have overexerted myself, especially in my arms. I did my Betaseron Sunday evening, with me now at half a dose. I woke up Monday with those "strange feelings" in my arms, which was something I had not experienced for a few weeks. I was concerned I was having a new flare up, but I now mainly attribute it to my overexertion over the weekend. I went to work and it pretty much cleared up, and I ventured to the infusion center that afternoon for my first day of my second round of Solumedrol.

Usual terrible taste in my mouth, but no real reaction that evening, but I had a bit of a headache and some brain fogginess the next day. Second treatment on Tuesday and more Betaserone that evening, and Wednesday again found me with a bit of a headaches, a little fogginess but still feeling decent enough. The final infusion was Wednesday, and I still felt good enough that I was able to go to a club meeting afterwards, though I was starting to feel fatigued.

Today, Thursday, I am really tired and feeling some leg pain/stiffness (back of the leg on the left side) with a bit more fogginess. I made it through work, but was looking forward to getting home and taking a nap!

I have not noticed much of an energy boost at all through this, nor any particular gain in appetite. In fact, this time and the previous time I think my appetite went down. Being tired and foggy is a bit depressing, and being still new at the MS thing, being unsure about all will or may happen is depressing in itself, which brings on fatigued I suppose.

I am hoping that these feelings are due solely to the Solumedrol and not due to any relapse, but time will tell. I will report back on how long this fatigue lasts and what other symptoms occur.

[FL_Jhawk]

Another update for anyone who is interested.

Could barely sleep last night and was up literally every hour going to the bathroom (#1). This is a day-off Friday, so no work for me, but I had a follow up appointment with my neurologist. I would have preferred to have stayed in bed, but I got up and drove to the appointment and when I arrived the receptionist looked at me strange and asked what I wanted. “Er, I am here for my appointment,” I said. “Uh, the doctor is not in today. What is your name?” She typed my name in and said she shows no appointment for me at all any time this month. I was sure I had an appointment. I remember being in a month ago and making a following up for 4 weeks later. She repeated there is nothing in their records. Cog fog? Am I imagining things now? Oh, well.

I am building an airplane at the local airport, so I went to my hanger to work on my plane. I was fatigued, had a little cog fog, and continued to have some uncomfortable leg heaviness. I survived it all and put in a long day and drove home carefully. When I got home, I looked on my bathroom vanity and there it was, my appointment card for the doctor. I did indeed have an appointment scheduled and it was indeed for today – Feb 10, 2012, at 9:45 AM. I was right. They messed up. The neuro is a pilot and I may see him at the airport tomorrow, so I will give him trouble over that!

Anyway, at this point, I feel worse after the Solumedrol. It is like it made my worst MS symptoms return. I continue to hope, like before, they will clear up in a few days to a week. Ugh. Still, I am grateful for having a decent-enough day I can still work on my plane.

[LisaL77]

JHawk, sorry your experience is so fractured. I'm having a lot of trouble with my reaction to the Solu-Medrol and Gabapentin 3 x a day.

I feel like I am racing through space at warp speed because my balance and dizziness are so bad. I am experiencing pain and weird electrical shock sensations. The pins and needles on my right arm is overwhelming, but it's better than no sensation at all.

Colors are brighter! Pinky on right hand has some feeling. Right ear feels like it's 'mine' and not a foreign object. I think I'm getting some feeling back.

[FL_Jhawk]

Another update if anyone is interested.

I had my second monthly round of Solumedrol starting a week ago Monday (this is the second Tuseday). After the third day of the 3-day treatment I was feeling worse. It was a return of previous symptons which included leg pain, fatigue, mild banding (in my forehead), and some cog fog, which continued through yesterday (Monday). Today, even with a newly increased dose of Betaserone taken last night, I felt better. Much of the fog was lifted and some of the numbness and fatigue diminished. Other than some tired arms (a previous symptom I had not felt for a while) and a numbish big toe, I don't feel too bad.

So, my conclusion is that the Solumedrol does tend to take me down for about a week and you just have to slug it out. It makes me wonder if I want to do it again, but then you read where pulse steriod therapy has been shown to reduce relapses over time. I am very fortunate that, newly diagnosed at age 56, my symptoms are still pretty mild and have not gotten any worse than what they had been, so I guess I will keep doing this.

[Yankee]

Solumedrol

These posts look very old (2012). I'm a new member so I'm just testing the waters here. I just finished a 3 day stint of Solumedrol and wow...both great and nasty. I'm actually an old pro with steroids (29 years) for my MS but I will never get used to them. Never sure if it really works because while I'm taking it I feel good (speedy), but as I withdraw it plays havoc with my symptoms and that can be horrible. Lately my symptoms are that I feel woozy, my body and legs have been vibrating/buzzing too much, for a month and a half so, my Doc said "let's hit it hard". Whew, I'm wiped. Ok, that's all for now.

[ram11273]

Still feels like optic neuritis

I was in hospital for 5 days almost 2 weeks ago for optic neuritis/vertigo. I had IV Solumedrol (1000) steroids, brain, neck, spine mri's and monitoring. Im still a little swollen from steroids, body hurts still blurred eyes, and feels like needles sticking my right eye, obvious headache's. I've done 5 days in hospital before and eyes were cleared n I wasn't as dizzy as I still am. I feel the same way as I did before I went for the treatment. I'm too dizzy to even get to neuro. Wondering if I should tell neuro that I need to do another round of steroids. Anyone else ever go thru this?

[Kimba22]

I was in hospital for 5 days almost 2 weeks ago for optic neuritis/vertigo. I had IV Solumedrol (1000) steroids, brain, neck, spine mri's and monitoring. Im still a little swollen from steroids, body hurts still blurred eyes, and feels like needles sticking my right eye, obvious headache's. I've done 5 days in hospital before and eyes were cleared n I wasn't as dizzy as I still am. I feel the same way as I did before I went for the treatment. I'm too dizzy to even get to neuro. Wondering if I should tell neuro that I need to do another round of steroids. Anyone else ever go thru this?

Hi ram,

I created a new thread for you http://www.msworld.org/forum/showthr...optic-neuritis

[fbwill88]

Solumedrol tx

Just finished my 3 day 1000 MG solumedrol, ugh, dizzy ataxic weak tired, hoping it passes and my ms symptoms improved have been down for about 4 months now with first relapse, diagnosed Oct 2015. Still in some denial, hired a nurse, not working, single, ugh ms going to be starting tecfidera as soon as insurance clears. No one prepared me for this, only 45 yo. Not ready for this, it has to get better....