What comes next?

[Waydwnsouth1]

Well I just finished my 4th day on steroids. The first 2 1/2 days were good but the last part of yesterday and all today not so good. The pain and spasticity are back. It's the flare that won't leave.

Will the steroids continue or will I stop them. Will I have to change my DMD? Or is this a sign of progression? If anyone cares to weigh in I would greatly appreciate it. I go back to neuro tomorrow.

[MarieT]

Oh I feel for you! I did 1250mg oral pred for 3 days last week and am tapering off. Most of my symptoms resolved (my right foot is still tingly, but it is improving from numb).

I'm so sorry things came back. How high and how long was your dose? Did you do IV Solumed or oral doses?

My neuro and I decided to do oral because she is 60 miles away and traveling to her hospital to do IV Solumed was a hassle, and she has found research that shows that high-dose oral can be as effective as IV.

That being said, she did say that if the oral pred didn't work, we would go the IV route next.

[mjan]

You are on oral steriods right? Its up to your doctor to evaluate if that was enough treatment.

And sometimes it takes awhile for the steriods to kick in and work. Others will come on and give you their experience and opinions.

Hope you feel better real soon,

Hugs, Jan

[Redwings]

Hi Waydwnsouth:
In following your posts about your flare and steroids, I have a couple of thoughts. One is that your doc waited too long to start you on the steroids and the other is that you're on an oral dose that's high enough to give you the crummy side effects but not high enough to knock out the flare.

One of the principles about prescribing steroids is that they have to be used in a high enough dose for long enough to do their job properly. The confounding part of that, though, is that sometimes it's not clear exactly what that combination is. But it does seem that, for a significant MS flare, the preferred protocol is a short-term, high-dose whack.

60 mg of oral for a significant MS flare may not be high enough. It certainly wasn't high enough for optic neuritis in the Optic Neuritis Treatment Trial and has been warned against as being too low a dose.

If the intent of steroid treatment is to shorten the duration of the flare, waiting to start them is counterproductive.

And, if steroids are going to work, they work quickly. They're in and out of the body in just a few days, so "waiting for them to kick in" is somewhat of a misconception. They do their job pretty quickly while they're in the body for a few days and then they're gone.

I know many patients say, "I don't understand all the details but I trust my doctor." But then it shouldn't come as a complete surprise when the doctor doesn't follow conventional treatment practices and the outcome is less than optimal. Your flare may be the flare that won't leave because it hasn't properly had its butt kicked and been shown the door!

Q: "Will the steroids continue or will I stop them."
A: Dunno. What do you want to have happen? The benefit you're getting may not be worth the risk you're taking, even though the dose is low. A higher dose carries more long-term risk, but the chance of a greater benefit might make the trade-off worthwhile. The unknown here is that a lot of time has already passed and damage has already been done that steroids can't help.

Q:"Will I have to change my DMD?"
A: Not possible to tell based on the flare alone.

Q: "Or is this a sign of progression?"
A: Not possible to tell based on the flare alone.

I hope your neuro has some solid answers for you.

[bellaboostevens]

Hi, I have been on 3 day and 5 days of steroids. When I get a really bad flare, I can't speak, legs parallize (SP?), no energy, and a few other things. At first nothing really happens, it takes at least day 2 of steroids for my speech to come back, but the walking even after 5 days of steroids takes up to 2 weeks to come back. To me that is better than if i have no steroids it can take up to 2 months to start walking. It isn't an instant fix, but it does work. after the last treatment in dec. they decided that my meds were not working. took me off, right now they have me on iv steroids once every 4 weeks. have a few probs, but not as bad as usual. hoping the meds coming out next year will work. good luck to you and don't give up.

[Redwings]

I did 1250mg oral pred for 3 days last week and am tapering off. ...

My neuro and I decided to do oral because she is 60 miles away and traveling to her hospital to do IV Solumed was a hassle, and she has found research that shows that high-dose oral can be as effective as IV.

Hi Marie:
Thanks for posting about this. Information about the high-dose oral equivalent to IVSM has been slow to get out. The old convention that oral prednisone automatically means low-dose has been slow to die.

My own doc is fine with the concept of high-dose oral prednisone but doesn't recommend it because he's afraid all the prednisone will lead to an ulcer and I'll bleed out! (I've done the high-dose orals a couple of times and did fine, though.) So despite my worn-out veins, it will still be IV for me until I have no other option.

Your post is an important reminder that the times they are a'changin'.

Well I just finished my 4th day on steroids. The first 2 1/2 days were good but the last part of yesterday and all today not so good. The pain and spasticity are back. It's the flare that won't leave.

Will the steroids continue or will I stop them. Will I have to change my DMD? Or is this a sign of progression? If anyone cares to weigh in I would greatly appreciate it. I go back to neuro tomorrow.

Hey waydown, once again we're on the same trajectory. We started our flares and oral steroids within days of each other.

I got better right away on the dex, but 24 hours after I finished them my symptoms started coming back, though not as bad as before because while I was weak, I wasn't in danger of falling like I had been before. The pain has been worse than it was before I started the steroids. I don't know if calling improving function a victory, but I guess I'll take what I can get.

[MarieT]

Thanks Redwing. I've enjoyed reading your posts. You are a font of information!

I researched oral pred, too, after my doc suggested it. Oral seems to be the treatment method of choice in Canada and Europe.

As far as stomach problems, my neuro has me taking pepsid ac with the pred. It certainly keeps down any heartburn!

[SNOOPY]

Something else to consider:

Your doctor can treat your pain and spasticity with symptom management medications.

A list of medications and what they are used for in MS:
http://www.nationalmssociety.org/abo...ons/index.aspx

Not all relapses require or are helped by steroids. Steroids can sometimes be only a temporary solution to symptoms that continue to be a problem.

[Waydwnsouth1]

Redwings

I always appreciate your concise, insightful and obivously well educated replies. You may not always say what people want to hear but you are very informative. Thank you!

I was at my neuro as I was reading your reply. We discussed some of the topics you listed. I asked if it were medically acceptable to take IVSM after a significant oral dosage. He said it is and that would definitley be an option. We talked about the benefits-vs-risk factor. I told him I am aware steroids do not stop a flare but serve only to help shorten it or at the least bring relief to the hyperactive, for the lack of a better word, sx. We agreed to wait until next Monday and if things are not better we will do 3 days IVSM.

I was concerned about waiting so long and the possilibity of thngs getting worse. He assured me that I would be fine and if something should come up call. Coming from this Neuro I am completely comfortable with that.

So, now we wait.