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645390 tn?1338555377

Need Opinions today please

I know I haven't been here for a bit, trying to take a break from MS.

Anyway, here is my ?  I have been in a relapse for awhile. Doing worse on the neuro exan, double vision, decreased hearing in my right ear, on and on.  The short story is I am going to stop Copaxone, and my 2 "choices" at this point are going to be Tysabri or Gilenya.  Both sound awful.  Details later, this is not what this post is about.

I "agreed" to a course of Solumedrol this past Thursday.  Home Health care is supposed to start coming tomorrow.  I got the delivery on Friday night (10:00 in a blizzard) poor delivery man.  

Well, this weekend I pretty much slept the entire time.  I am feeling better and Ha vent had any double vision since Saturday.  Do you think I should cancel the steroids?  I really want to, HATE those, and only agreed mainly to see if it would help the double vision.  I need help deciding.

I already opened the box, as the IV bags had to be refrigerated.

Just curious on any thoughts, thanks,
michelle
9 Responses
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1453990 tn?1329231426
II Nerve insult (Optic Neuritis) didn't seem to be effected by my 3 days on 1 gm per day IVSM.  They did the VEP about 2 weeks after the steroids, and even though my vision was improving, my right eye was quite a bit longer on the P100 time.  While IVSM may have stopped the attack and reduced the inflammation, the VEP could still detect the damage.
Helpful - 0
645390 tn?1338555377
Thank you for all your comments.  I am going to start the steroids today.

Ren, I am going to speak with my boss today and ask about the steroids for a VI N palsy.  I dont really think that will help, but I am going to ask her.  If it is a "true" palsy, it sometimes can take about 6 months to recover.  It also shouldnt change the VEP at all, unless your vision is also affected. (The sight in the paralysis eye.)

Ren, always seems like we are on the same page here. Too bad we are so far apart, we could sit on the couch and watch a movie together.  By the way, how is the snow there?  Looks pretty bad for GA.

Helpful - 0
1396846 tn?1332459510
I just took IVSM last month at Christmas time and if I didn't need it I would not take it. I can't stand the way they make me feel. If your symptoms are getting better maybe you should talk with your neuro about not doing them.

As said above they are only there to help with the symtoms so if the symptoms are getting better then there is no reason to take them.

Good Luck,
Paula
Helpful - 0
739070 tn?1338603402
Dear Michelle,

I'm scheduled for a round of steroids when the roads become passable, probably Wed.  As for your DB, I was told it MAY help mine but I want some relief from the bone pain.

So, we have 2 things in common, First, have past rounds helped your leg function? Do you have any success with steroids and leg pain? To me, this would be an indicator of how well the steroids will work on the DB.

Actually/ I am scheduled for steroiids for leg pain but have DB. My question to the eye expert, Michelle, while the DB change my VEP and BAER if  Ihave a 6th nerve palsy?

I think we both need an expert opthomologist on hand to see how steroids affect DB.

It is a personal decision and I would base my decision on former infusions.

Let me know if you stumble across an  expert before Wednesday.....

Ren
Helpful - 0
559187 tn?1330782856
This is a touch decision.  You know how steroids can be our best friend or worst enemy.  It "may" help keep your DB from coming back or it may not work.  The pros and cons have to be weighed and don't worry that you opened the box. No big deal. I think the drug is good for at least a month so if you need it you will still have it.  Talk to your doctor and see what he thinks.

I am not keen on taking steroids at all unless it is absolutely necessary. As you know, I just finished a 5 day dose and am now on the pred taper.  My blood sugar is out of whac, my whole body is swollen from fluid retention that I'm on a med for, and I have thrush all the way down my throat, another med i have to be on for that too.  BUT, the roids got me back on my feet so the side effects did not outweigh taking them.  

I don't know if this helped, but I hope so. Like Sarah said, trust your body and do what it is telling you.  Let us know what you decide.  

Hugs,

Julie
Helpful - 0
1253197 tn?1331209110
Hi Michelle

I think this is a decision that you alone will have to make, but I am a great believer in listening to your body and gut instinct.  If you think you are improving and are reticent to take the steroids, think about why you have asked others what to do and you may find your answer.....

Ref. Gilenya and Tysabri......I know that you said this can wait for another post and this is probably a good idea to get input from others on what they have experienced...but at the end of the day..again you will have to make this decision.  They are very different treatments and personally I am finding taking an oral drug every day very easy but I will not be on the oral drug for definite till March in the drug trial I am on..so cannot really give any help at this point. There are a few others on the forum who I believe may be able to tell you how they have got on with both treatments.

Love Sarah x
Helpful - 0
1466984 tn?1310560608
So sorry you've been having a bad time.  I can't speak from experience of ever having had steriod treatments.  But it sounds like you don't want to use them.  And I (like Alex) have read that they don't change the course of the disease, they just help with the sx?

I don't know what the side affects are - but I've also read that they can be not so great.  

I always like making a T chart when I make decisions.  Pros and Cons.....maybe that could help you decide.

Can you call someone at your neuro's office to discuss with them?  They may have some good insights.

Best of luck to you and I hope you continue to feel better.
Carol
Helpful - 0
667078 tn?1316000935
You know the drill steroids do not help the course of MS at all only symptoms so if the symptoms are gone why the steroids? At least that is what all my MS Specialists say in their talks to the MS Society. That is just my two cents worth but I have never taken them so I am really not an experienced source.

Then again the double vision may come back tomorrow, I hope not but you have them.

Alex
Helpful - 0
1394601 tn?1328032308
My MS is out of control due to years of not being treated.  I take IVSM three times a month to help with the swelling which keeps my pain level down.  I also take Rebif.  If my neuro and I decide to go the Tysabri route, I would stop the steroids.  Too many risks involved with taking both.  

If I understand there will be a wait before they can start you on Tysabri so it might be smart to go ahead with the IVSM.
Helpful - 0
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