Inpatient IV steroids for 3 days—first time—have no idea what to expect? Please share

[Emily74]

Hi everyone,

I am so sorry to start a new thread when I haven’t replied to the old threads, but I just got out of the hospital after IV steroids and have no idea what is happening to me now or what to expect in the weeks to come. I have “what to expect after the first time w/ IV steroids questions” bolded a few paragraphs below if you want to skip down.

You were right! I begged and begged and got in to see my neurologist and I was so much worse that he had me admitted to the hospital for IV steroids, inpatient.

I am so grateful he finally took me seriously, but I have never had a relapse this severe and I’ve never been on IV steroids before. Based on what I have learned from you, I believe now he has consistently mishandled my care, and I want so much to get better this time. But again, I don’t have any guidance. So I am very eager for your input—since you all knew what I needed weeks before he did! (Someone should be paying you all a salary)!

My vision has been blurry since my first dose—blurrier than it’s ever been during an MS exacerbation—so I can’t read much for very long—but my husband can read your replies to me. He is also very worried. And when I can see well again I can actually catch up and read what you wrote to me before.

I was in the hospital Friday Sept. 20, Saturday Sept. 21, Sunday Sept. 22, and Monday Sept. 23. I had 1000 ccs a day.

But they discharged me on Monday and the hospitalist did not have any information about Solumedrol or what to expect. He said to follow up with my neurologist. You all know how that story goes—my neurologist can’t fit me in until Oct. 15th. I called and asked if he would please, please talk to me and my husband on the phone and answer our questions—10 minutes tops—but no luck yet.

BIG QUESTIONS NO ONE HAS ANSWERED:

1. I was not given an oral taper. The hospitalist said in a person so young it wasn’t necessary. Is this true? When I could still see well enough to read well most of the information I found said an oral taper was normal.
2. The hospitalist asked when I was discharged if I “felt better.” No, I don’t. Should I? I still have the merciless clenching spasticity/pain and my walk is still stiff and hobbling and I would still need a wheelchair if I were in any condition to go anywhere.
3. But I don’t know if a person should “feel better” from an MS relapse right away after IV steroids. Is it supposed to take effect right away? That is what they seem to be saying. This makes me nervous. Does this mean it did not work? In your experience on IV steroids, how long did it take to work?
4. My last dose was 48 hours ago. I am having what I think are some pretty major side effects. The worst is the blurry vision. It’s not as constant as it was when I was on the steroids, but it’s pretty bad. I can’t read for long. The second worse is the headaches, and the third worst is the sore, sore skin and muscles. I just feel like I’ve been bruised all over.
5. Do these sounds like normal steroid side effects? If so, in your experience, how long will they last?
6. I guess I just feel like I’ve been hit by a truck—like I still have the MS symptoms and I also have these new steroid side effects. Is that normal? I can bear it as long as I know it will pass.

I’m officially “on my own” til Oct. 15th, since my neurologist will not speak to me til then, though as soon as I have any sort of energy at all I am going to try to find someone new. But if you can help me with these questions—please, please, please help!

If everything is OK, if I’m not supposed to feel better right away, if I know roughly how long it will take to feel better, if I know my side effects are normal and roughly how long they might take to go away, and if I am not supposed to be on a taper, I will be able to just take my pain medication and rest and wait. But because of what has happened in the past I just fear the worst. I don’t want this neurologist to hurt me any more.

I know this sounds silly, but I miss being able to see well enough to read.

And this may sound silly, too, but so far the best thing to come out of being in the hospital is I finally got some effective pain relief.

There was a nurse there whose father had MS. The hospitalist wouldn’t give me pain relief because he said “MS patients didn’t feel pain,” and after a day I was just curled up in a ball crying, and this nurse had the doctor and my husband and the nursing supervisor all meet, and they put me on IV Diladid, where you press the button for pain.

Even though I was on Solumedrol, when I got the Diladid I slept 16 hours. I have Diladid now in pill form and I can sleep at night for the first time in weeks. I am by no means pain free, but I sleep, and my pain is substantially relieved. I feel hope in this.

And that nurse—one thing I just want to say that lightens up the dark, is that this nurse took my face in her hands and kissed my forehead as soon as I got the Diladid, and said I’d have a better night. There are good and beautiful people in the world—she is, and you are.
Emily

[MSer102]

Hi Emily. Thanks for the update.

You did the right thing by starting a new thread. New topics need new threads and it makes what you have to say so much easier to follow so you can get the answers you need.

I have been on IV steroids and even high dose oral steroids many times so I'll answer your questions as best I can.

1. One of the side effects of high dose steroids is blurry vision. For some strange reason it often isn't listed among the side effects but it definitely happens. I get blurry vision every time!

After my first few IV series for MS flares which included optic neuritis, it wasn't the blindness in one eye from the ON that kept me home from work for 2 weeks. It was the blurry vision in my good eye from the steroids that kept me home because I was so blurry that I wasn't safe to drive.

So for some people blurry vision from the steroids is a side effect. Don't worry - it will clear up when the steroids and their after effects clear up. Might take a week or two. So as scary as it is it's really nothing to worry about!

2. Oral steroid tapers after IV USED TO be normal - they aren't anymore and are being phased out. Research showed that there is no medical benefit gained from them when used after IV steroids for MS attacks. It is now the standard to NOT do an oral taper after treatment for an MS flare.

Tapers were based on the idea that they were needed to prevent rebound inflammation and to help the body start to make its own steroids again after people were on steroids for weeks to months to years for other conditions, not MS. It was found that the adrenal glands DON'T shut down after a 3 to 5 day steroid treatment for MS and that there isn't any rebound inflammation after a 3 to 5 day steroid treatment for MS. So an oral taper is now considered to be giving excess steroids for no benefit and adding to the cumulative damage that steroids cause.

I haven't done an oral taper in years and I'm glad. A taper only added to the agony of the steroid side effects for me and just prolonged the time until the steroid side effects went away. So if you feel bad from the steroids now, imagine what it would be like to prolong them for another week or two!

NOT having an oral taper is now becoming the standard of care so you are OK there.

3. No, you should NOT feel better right away from steroids. And especially you won't feel better right away if your symptoms have been there for a long time.

Steroids don't do anything to heal damage. So you are definitely NOT going to feel better from existing damage right away, like aspirin can squelch a headache in a half an hour. I think that's the biggest misunderstanding about steroids. And apparently even some doctors don't understand that.

Steroids only suppress inflammation so there is a "quiet" environment in which the body can heal. So in that respect they have already "worked." "Working" means that they suppressed inflammation, NOT that you have healed or that you feel better. The body has to heal itself. That can take weeks to months.

And so it can take weeks to months to feel better. And if the damage is permanent you might not feel better. It doesn't mean that the steroids didn't "work". It's just that how well they suppressed inflammation ("worked") isn't related to how fast or whether the body heals so the success of the suppression can't be judged by how quickly you feel better. Those two things can't be mixed up although apparently even doctors do that.

So it sounds like the hospitalizing doctor who asked you if you were feeling better was either just making conversation or he really doesn't have any idea of your situation and what steroids are supposed to do and what they don't do. And whoever the "they" are who are telling you that you are supposed to feel better right away - you can ignore them because they don't freakin' know what they're talking about!

In fact the nasty side effects from the steroids might even have you feeling WORSE! That's pretty common, so if you don't feel better and feel worse in some ways, that's to be expected. Try not to worry about it. It takes a week or two for the steroids and their after effects to go away.

4. The sore skin and muscles are pretty common. I get that every single time, especially in my shoulders and upper back. Even the pressure of the water in the shower hurts for awhile. I also get headaches, sometimes vertigo and sometimes all I can do is lie in bed and sweat with the room spinning because I over heat so easily after steroids. And another thing I sometimes get is that my knees and ankles lock up easily for a few days. So don't worry if your walking is even stiffer for a few days. If it's a steroid side effect it will get better along with the other side effects.

5. Yes it sounds like you are having the usual steroid side effects. Feeling like you've been hit and dragged by a truck is one way to describe what it feels like - that's what if often feels like for me.

You didn't mention being bloated from retained water/fluid, but that's one of the major side effects of high dose steroids. I have bloated right out of my clothes and into a bigger size from the 1st day to the 3rd of my IV's. So if you feel like a squishy water balloon, that's pretty normal.

One side effect you might have been lucky enough not to get is that food loses its flavor and everything tastes like cardboard for a few days. I've had a couple of Thanksgivings go by like that.

I get a little addle brained for the first week, I think from all of the retained fluid waterlogging my brain. And sometimes I can't pick sounds out from background noise. I call that "blurry hearing" to go along with the blurry vision.

About a week after my last dose I go through a few days when I get, well, gassy and farty! And I sometimes get steroid induced acne. If that happens to you don't worry. It all goes away in a few days like everything else.

Now this part could be important. I know you've had some urinary trouble so I don't know how this might go for you. But what goes in must come out. So all of that retained water will have to come out sometime.

For me it starts to come out maybe 4? days after my last dose of steroids. I have to pee frequently. Sometimes that means that I wake up about every hour during the night for a couple of nights just to pee! But after that it goes back to normal and I stop looking and feeling like a water balloon.

I wanted you to know that so you don't worry if you start to need to pee a lot. It's a normal part for a lot of people for the side effects starting to get better. So I didn't want you to think that something had suddenly gone wrong with your urinary system or that the steroids had somehow made your bladder worse.

But I don't know how easily that will pass for you because of your earlier troubles. So maybe you should be ready for anything and be ready to call your primary doctor if things go somehow bad with the frequency of your need to pee for those couple of days or so. Or maybe be ready to go back to the ER if you think you need to pee but can't. I don't want you to get freaked out if it happens but I hope you can be calmly prepared in case something happens.

I'm sure other people will reply to tell you what their experience with Solu-Medrol has been. It can be different for everybody. Even for me every flare is a little different - some steroid experiences better, some worse.

I'm a little jealous of the people who say they hardly get any side effects at all from an IV Solu-Medrol series. Wow! But then there are other people who get so sick from the steroids that they swear they'll never do it again. The way you've described your side effects it sounds like your experience is in the terrible "middle".

So welcome to the Solu-Medrol club! Again, most of the side effects will be gone in a couple of weeks. So do try not to worry.

Finally I'm SO glad you finally got your pain taken care of! Dilaudid is a wonder drug!

When you feel up to it please let us know how you are doing. And of course please ask if you have more questions.

[Kimba22]

Hi Emily-

I was going to ask if you were OK, since you haven't posted anything for a week. Instead I noticed you posted! I'm relieved you were finally admitted and given IV steroids, given Dilaudid to manage your pain, and finally can sleep.

I'd personally like to shoot anyone who says there's no pain with MS. I deal with constant pain due to spasticity. (Good Lord, anyone who has had a muscle cramp knows it hurts!) Unfortunately, it's only been within the last few years that this reasoning has officially changed. But, changing minds of those who heard otherwise is a slow process which I'm sure won't ever change for some.

Some answers I can share, based on my experience

1. The oral taper is falling out of practice. It has nothing to do with age. I remember being told it was to reduce the effects of stopping such a high dose abruptly years ago, but found no difference myself. I'm actually glad I haven't had to use it anymore, since the side effects of steroids linger longer that way.

2. & 3. It can still take a few weeks before you notice improvement from the steroids. Rest as much as you can and try not to stress out about how fast they will work right now (I know, easier said than done).

4. Yes, steroids can have an effect on your vision until they are out of your system. (As far as I remember, it takes a week for this to happen.)

5. & 6. This can all be normal.

Each person's experience will be different, and each time can be different for the same person. I've had all the side effects you've mentioned at one time or another (and a few to boot). But, I never had all the exact same side effects each time, although there were a few that were consistent.

I hope some of your anxiety will be relieved by responses you receive to your post. I know others will address anything I haven't.

Try to keep hanging in there ... the worst of what you've been through is finally over.

And bless those nurses who offer kindness and compassion when a person is suffering. I've been lucky enough to meet a few of them myself over the years. Thank goodness just the right nurse was placed into your care that night.

I'm glad the posters on this site could offer some advice to you, but so sorry your own doctors were slow to listen & take action. The concern & compassion from posters here has warmed my heart, too. There indeed are good and beautiful people in this world.

Good luck, Emily. I hope you are back to feeling better and able to be there for your family again, soon.

[michelerenee]

I just went through something similiar about four weeks ago. Had a total of five days of IV steroids.

My side effects were:

1 dizziness: with this and the weakness I ended up using a cane for about a week.

2 I peed ALL the time

3 very gassy/bloated

4 a little bit of water weight/puffiness

5 a little moody but terrible

6 general achiness

I was prescribed a taper but shortened it doing each step for 2-3 days instead of four.

Its been about four weeks and i am finally feeling better. Not 100% but this may be my new 100%. LOL

Best of luck to you!!

Michele

[hsmaldo]

So glad to hear from you!

Emily,
I've been hoping and praying that your lack of activity again was due to you being admitted to the hospital and I'm SO glad that was the case!

I've never had the steroids, so I'm glad that others who are more knowledgeable have been able to answer your questions regarding them.

Thank God for that nurse who acted as an advocate for you and got the pain relief that you so desperately needed! Getting sleep and rest is paramount in healing and now that you're able to sleep, your body can start the process of healing.

It sounds like you still have a long road ahead, but you said that you now have HOPE, and I know that will carry you through!

As an aside, because of your situation, I have looked at my own through the lenses of "worst case scenario" and have started thinking about questions to ask my current neuro about levels of care during a flare, what possibilities exist and because he and the hospital he visits is an hour away, have also made an appointment with an MS Specialist who is 20 min from my house to see if I "click" with him, to see what level of care I could expect from him and what is available at the MS center.

So, while I'm sorry for all the pain and suffering that you've been going through, it really opened my eyes to things that can and SHOULD be done, as well as how things can be mishandled and mismanaged. That has really driven home the need to have doctors who I know, trust, and can depend on! So thank you, for being so open and candid, because it has been helpful to me!

Hang in there dear one, there is now light at the end of the proverbial tunnel and I know that you can make it through all of this!

Hannah

[tlbaker381]

iv solumedrol

I'm finishing my 3rd and last treatment today. I guess I'm lucky because I began responding after the 1st one. My vision actually got much clearer and my cognitive issues are becoming a little better also. Just one more to go today and then wait to see what happens. Guess everyone responds differently to treatments just as all of us have differences with our battle with this disease. (ms) Just wanted to post a positive and pray that things turn around for yourself...

[KellyTour]

Side effects

Hi, I am new to this party! I was admitted to the ER/hospital 9/16/13, preliminarily diagnosed with MS 9/18/13 and immediately put on a 5 day 1000cc steroidal treatment. The hospital neuro is obviously aggressive! Like you, I felt like I was smoking crack and hit by a Mac truck--could have also been side effects of lumbar puncture--

My whole body was achey (but was already experiencing this with probable MS symptoms), blood pressure off the charts high, "brain fog" jittery, insomnia, nausea, anxiety, all and all fun times. BUT I would do it again, as it this point no other MS symptoms have appeared.

Two different neuros have explained to me that the steroids arrest the hyper-inflammatory activity, but do not immediately resolve MS symptoms. I still have major extremity pain that ebbs and flows, numb/stiff body parts from head to toe (mainly on left side).

I am taking Gabapentin and Motrin but not necessarily getting any relief. Since I have more strength today, I am going to roll around on the floor with my foam roller (FYI, very good inexpensive prop for muscle relaxation, spine alignment. If anyone has ??? let me know, I am a Pilates instructor and have owned my own studio in LA for 11 years.).

AND QUESTION FOR POSTERS: in your experience how long after a steroidal treatment did you resume sensation, pain reduction, mobility? I understand it takes a while to heal, but ballpark idea would help me reconcile some of my emotions. Thanx!

@EMILY--I hope you feel better soon!!!! Xoxoxo, Kelly T

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[KateA2]

Hi Emily- I hope by the time you read this you are feeling better!

But to answer some of your questions:

1. I prefer NO steroid taper. I've done both, and tapering prolongs side-effects. I say get 'em done and over ASAP (plus no current research shows that it helps MS'ers to taper.)

2. During a 3-5 day infusion I get overheated, sweaty, jittery, and occasionally VERY MOODY (my husband calls it flare-'roid-rage...hard to remain calm at small annoyances - but it quickly passes *phew!*) I have tons of energy during the infusion, like super-woman.

3. Sometimes I get very hungry as blood-sugar swings are common with steroids - if this happens to you, avoid sugar/salt and white-flour carbs (retain less water/bloat less).

4. It can take a month to begin to start feeling better, and you may slooooowly continue to have some improvements for awhile depending on where/what the damage is...everyone's different.

5. The 2 weeks after a course of steroids are the worst: acne, bloat, mood-swings, serious joint aches/pains, and overall feeling of having a nasty flu + MS. You'll be peeing allot (I usually do), drink enough fluids, fresh veggies and salad, lean protein to replace vitamins and whatnot.

[dyin_myelin]

Hi Emily,

/hugs I had similar problems with regards to a neuro apt. that was three months out. I went to my GP and he helped me with residual sx. He even found out I had a UTI and cleared it up for me, making it easier to go. I was tapered off the roids.

-Bulking fiber Between the MS and the roids I didn't go for two weeks and wish I'd started earlier.

-Thrush A delightful fungal colony set up shop in my mouth/corners of my mouth. Vingear and it resolved on its own.

-Three hour sleep cycles Yay! Classroom neat as a pin.

-A full month for sx to resolve. Mobility in legs first to return, numbness and bowel function in abdomen last to return. Cog stuff/Lerhmites hung around.

-I met a dog with an autoimmune disease just like me! She was doing roids too, and was losing hair. That was an ah-ha moment because I've been losing so much hair I'm surprised I don't look like I've licked a nuclear fuel rod.

[Leeaura]

My experience

Emily,

First of all, don't ever worry about starting a new thread. You must need some answers and that's what the wonderful people here do! Besides, those of us that don't sleep can always need something to read....

I've done IV steroids once. Five days x 1000 for vertigo/dizziness/nausea during last year's heat wave.
Doctor's nurse said it wouldn't help but I begged and away we went!

Days 1-5: Did not see benefit but also had no side effects.
No taper because I didn't want any.
Days 6-8: Felt like I had the flu. Whole body ached. I stayed in bed, but could not sleep. Was wide-eyed.
Days 9-?: Felt so wonderful I could have jumped the moon and I was STARVING. I gained 10 lbs in the next 3 months but it was with it to get rid of the vertigo.

Most of us will need steroids at some point or another.
Everyone will have their own reaction too. I hope yours turns out as well as mine! Good Luck and Take Care

[tlbaker381]

Follow up

After finishing my treatments all symptoms have returned. Was hoping they would continue to get better but maybe with more time they will again respond to the treatments.

[hsmaldo]

Emily--how are you?

Emily,
how are you doing lately? I've been thinking of you a lot and just wanted to check in with you to see if you were feeling any better.

How are your eyes? Is the blurriness going away? Does your flare seem to be calming down?

Please update us if/when you're able...Hope things are starting to get better for you!

Hannah