I've been having some dizziness issues this past week. In my general MS history, these have normally been an indication of the beginning of a flare. Sometimes, in the more recent past, I have wondered if dizziness is becoming more of a residual symptom, that is mostly gone, but, re-occurs from time to time (once every couple of months, maybe).

In this case, I've had dizziness symptoms, probably 8-10 times in the past week. They are always fleeting (30 seconds or less), and, usually occur upon rising. (ie: at night, to get up for the bathroom, in the morning, or, following a nap). Occasionally, they've seemed to occur, during the day, without "rising" as a trigger. I've been keeping DH informed about them.

I tried, yesterday, taking some Meclizine (for dizziness) 4x per day, which Dr. L (my MS specialist) had rx for me in the past (probably, with the possibility of dizziness being a residual symptom), with no noticeable different results. This time, dizziness is probably occurring frequently enough for us to be able to assume that this may be the beginning of a flare.

The only other symptom that my DH and I are noticing is that I've seemed to be more tired the past few days. That is, also, sometimes (prior to mania), an early sign of a flare. I generally notice the physical symptoms, and, if there are memory or manic kinds of symptoms going on, he is often the first to pick those out. (Sometimes, I am able to notice changes in my thought patterns before DH does.)

I emailed Dr. L's nurse, regarding how to best treat this. (She generally responds quickly to emails; it is difficult to get her to respond to phone calls. Her office is located in KS City, 3 hours away.) I had fairly mixed feelings about how I'd wish to "treat" this flare. In the past, on Betaseron, if I had already gone this long in a flare, I'd likely already be manic, and, probably already hospitalized at a mental health facility.

Both DH and I seem to suspect that the Copaxone I am currently on seems to allow a flare to develop more slowly, and, perhaps, give us more time to assess things. I hate prednisone and its side effects. I dislike the weight gain that accompanies it. I dislike the nights of being unable to sleep, etc. However, I don't wish for this flare to progress to mania, even at a slow pace. Not with my daughter being home in less than 3 weeks, and her wedding coming up in May.

So, as I said, I was looking for some advice/input from Dr. L, regarding how to best treat this. (Decided to start with her, rather than going just through Dr. W, my PCP, who is locally located, but, has much less knowledge about MS.) I told her that I might lean to being somewhat conservative, perhaps (rather than aggressive) and, maybe not going for the full 5-day 1000mg treatment. But, being aggressive enough (even if it means the "full" treatment) to stop the flare before it becomes big.

Current symptoms are minor and manageable. Many people with MS would likely have the luxury of choosing not to treat the flare at all, and, just allow it to run its course. My MS history does not seem to allow me that choice.

Dr. L decided to rx 80mg per day, for 10 days, followed by a 9-day taper. Many doctors and pharmacists consider 100mg per day to be a high dose. So, even though this is considerably lower than the 1000mg I usually take, it is possibly high enough to stop the symptoms from increasing.

DH and I will continue to monitor for continued or increased symptoms.

~ Faith

no advice, just hugs

((((((Faith)))))) Hurry up and feel better.

Feel better soon, Faith.

During the night, I experienced the mild, brief dizziness 3x when I got up to use the bathroom. But, not every time. If the dizziness does not decrease in the next day or two, however, I will likely contact the MS specialist's office again, in case she wants to increase the steroids.

I remain mildly concerned, because of my hx, that, if left untreated, this flare will spiral into something big. Hopeful, though, that the Copaxone will continue to give us time to assess (and re-assess, if necessary) treatment options, so that maybe I can avoid the side effects of a mega-dose of steroids if it's not necessary. No weight gain showing on the scale yet, this morning, on this lower dose. And, I did sleep fine last night. Don't know if it was because the 80mg prednisone dose is less than 10% what I usually take. Or, because of the Trazedone that I took, just in case.

Like I said, the symptoms of this flare, so far, are real mild and manageable. I plan to do my nursing home volunteer work today, as scheduled (playing piano for devotions and dinner music). I also have some short volunteer things coming up Thursday and Friday, and I got a phone call yesterday, and, consented to volunteer to substitute teach Wednesday and Friday (two hours each morning) for Community Playschool (nine 4-5 year olds; there will be 2 adults). Most weeks, I don't volunteer for more than an hour a day. But, the sub thing at Community Playschool has come up more frequently lately. One of their regulars (2 mornings a week) has been recovering from surgery for weeks, and they've been utilizing two of their subs to alternate to fill in for her. I've been enjoying the opportunity to work in the early childhood field again.

I'm not feeling badly at all -- slightly more tired than usual is all. Will just make sure that I nap as much as I need to. This seems do-able. I elicited feedback from DH, prior to consenting to do the playschool sub job this week.

~ Faith

Faith - I am glad that things are going well for you so far. It may be the effects of the Copaxone. In my experience, it does lessen the symptoms and severity of the flare. I hope you start feeling better soon and that it all works out for you.

Sorry to hear of the flare. It sounds like one to me!

I hate doing steroids as well because of their negative side effects so I will recommend this to you...
Acthar Gel.
Its a shot you give yourself 5 days in a row once a day. Its not synthetic steroids, but it does stimulate your hormone that produces natural steroids.

I was in a flare (pretty sure I still am) the first of March and was put on Acthar Gel on 3-18-11

Within the first 6 hours I was able to walk without holding the walls and the spasticity in my back calmed down immensely. I still can't feel my hands, so I don't know if I am still in the flare or if this is just a semi-permanent symptom.

Acthar is $25,000 for the little bottle of it, but there's an assistance program that will help cover what your insurance won't. Hope this helps some and you get to feeling better soon!

$25,000! Holy chit! That's a lot! Does it last a long time? Does insurance cover it?


How are you doing today, Faith?

craziness, right?

It builds up like the synthetic do, but I have been off it for 2 and a half weeks now and still don't have the feeling back in my hands. But I did see improvements within the first 6 hours. So it steadied my gait, which was badly needed, and my back muscles relaxed some, and by day 3 I had all the feeling back in my legs and feet, but I use my hands more than my feet so it'd be nice if I could get full sensation back there. But I'm not complaining

The insurance part, now that's tricky. Depending on what your insurance company is and what they cover, I don't think alot of companies cover it. Why is it that we're constantly put in between a rock and a hard place?

Originally Posted by AynaDee..Acthar is $25,000 for the little bottle of it, but there's an assistance program that will help cover what your insurance won't.


Why so expensive? This is an old med (ACTH), that was used before IVSM came along. I guess big pharma got us again with an old med in a new form..