Flare Questions

[dyin_myelin]

I've only had one flare. I'm starting Tysabri which is 97% effective in preventing new lesions, so I hope that I won't need this info, but of course all MS fallout is never far from one's mind.

I literally went to bed healthy and woke up sick, so I don't know if it came on in five minues or nine hours. I also can't remember well the week before as I got distracted pretty quickly. Can you literally go blind/lame while driving or hiking? Do you have sx that suggest you may have a flare coming on?

How to start a line was demonstrated to me. I don't think I can do this in the midst of a medical crisis, esp. cause my hands shake so bad. Do you think a doctor would script steroids to me so I have them on hand if I get another flare? I'm traveling next month, and I am alone so if I can't drive I don't know how I would fill a perscription. TIA.

[aitch10]

I have good days and bad days, and I say I can "feel my myelin melting"(ie. quick onset of symptoms) if something stresses me out or if I get hot, but I haven't experienced a sudden loss of mobility without some sort of causation first.

And I could be wrong here, but I don't think steroids for a flare can be prescribed prophylactically. I've always had my steroids administered through IV so I'm not sure how that would work.

In any event, good luck!

[abeautifullife]

I found that after my first flare, I had the same experience as you - went to bed ok, woke up not being able to walk. But after the same thing happened during my second flare, I realized that my process was more gradual than that. I had probably just ignored the early signs of weakness during my first flare. The leg in question had weakness before reaching the point where I could not walk. So just be aware of your body (not obsessively so, but aware).

Hopefully Tysabri knocks it out for you and you won't have to worry!

[MSer102]

I'm kind of surprised that nobody has picked up on this so I will in case it prevents somebody from being misled because "I read it on the Internet so it must be true".

I'm starting Tysabri which is 97% effective in preventing new lesions

No that is not true! Tysabri doesn't work that well (wish it did). You or whoever explained that to you misunderstood what that number means.

That 97% applies only to gadolinium enhancing lesions found during the monotherapy clinical trial, not to prevention of all lesions. Lesions enhance for only about 6 weeks so it isn't a surprise that so few of them were caught during the trial.

For ALL lesions only 57% of test subjects had no new lesions during the trial. That's still phenomenally good but nowhere near 97%. 18% of the subjects had 3 or more new or newly enlarged lesions.

67% of the subjects were relapse free at the end of the trial. That's very very good. But 41% of the people on the placebo were relapse free too. The difference between them is 26%.

So that's the hard numbers from the Tysabri clinical trial. It's a very different picture than incorrectly using one result from the trial and saying that Tysabri is 97% effective in preventing new lesions. Nowhere near it.

I literally went to bed healthy and woke up sick, so I don't know if it came on in five minues or nine hours. I also can't remember well the week before as I got distracted pretty quickly. Can you literally go blind/lame while driving or hiking?

The inflammation from MS takes hours to build up it doesn't happen in a few minutes. If a problem comes on in just a few minutes it's considered to be a good indication that the problem is not MS. Migraines and strokes come on in a few minutes but not MS.

Like somebody else said there are usually signs that something isn't right a few hours or days before a symptom gets bad. But of course if you are asleep during those hours you won't be able to notice.

But MS isn't something that is known for "striking you down" suddenly in the middle of doing something. It isn't going to make you go suddenly blind - and not in both eyes - while you are driving or make you unable to walk after just an hour. If you can't remember the week before your flare it's possible that there were some subtle things going on that you had no way to know could turn serious so you might not have paid attention to them.

The stories of "I woke up paralyzed" are few and far between. And like it's said many times you have a much greater chance of being hit by a bus than you do of anything so dramatic happening from MS. So you have to try to keep things in perspective.

Do you think a doctor would script steroids to me so I have them on hand if I get another flare?

Based on the doctors I've had over the years I think the answer is probably not. And I'm sure not an IV setup.

You've only had 1 flare so there hasn't been time for your MS to show any need for steroids. The placebo studies show that people who aren't on an MS DMD generally have only 1 flare a year maybe 2. Some don't even have that many. So the only reason your doctor would have to give you steroids to travel with is your fear. And none of the doctors I've had would ever think that fear is a reason to prescribe steroids to a person with MS who has only had 1 flare.

Plus you haven't had enough time for you to gain experience to know whether steroids are called for. And your doctor would be out of line to just hand over high dose steroids to a person who is running on fear instead of medical knowledge. And again it's pushing things pretty far to hand over full supplies for mixing and administering IV's to an untrained person. I'm not sure that any of our doctors would do that for any of us who have had active MS for years.

Another thing is that MS isn't going to "strike you down suddenly" so unless you are going to be in Antarctica there will be time for you to get medical attention if another flare starts. Research has shown that steroids don't affect the outcome of a flare anyway so for most flares there's no emergency to start them right away. There seems to be about a 2 week window to get them started to try to shorten the length of a flare. And that's to shorten the flare not to affect the outcome.

You can ask your neurologist to prescribe you some oral steroids. There are still a lot of reasons not to do that but some doctors will prescribe an oral dose pack. The amount of steroids is much too small to affect a serious flare but also so small that you aren't going to hurt yourself with them either so some doctors do it so their patients will think they're doing something. So you can ask IF you do it by fully expecting the answer to be no.