When to consider starting DMDs?

[jumpinjiminy]

Let me start by saying, I'm a limbolander. The docs still have no idea what's happening, and I'm in the beginning stages of finding out, if that ever happens. I have this mysterious fever that comes and goes, which doesn't exactly fit with MS. But also, nothing brings this fever down, which doesn't exactly fit with a paraneoplastic disorder either.

However, I have been relatively mildly affected by this and am going back and forth between wanting to do something about it because of the obvious brain damage that continues to accumulate during this process, and not doing something (if anything is ever offered based on dx outcomes).

Assuming this may turn out to be MS (based on past history of possible exacerbations that were brushed off with other more common explanations), at what point does a doc offer DMDs? At what point do they consider doing IVSM?

If you're having a mild exacerbation, as mine must be because nobody is that rushed to find a cause except for me, do they offer anything to stop it? Does it work?

[metwo]

Hey jumpinjimminy I like that name

The unknown is harder than actually having a dx of something. I hear ya

I wasn't prescribed a disease modifying drug until I was diagnosed with MS even though I had symptoms. They have side effects and are very expensive so they want to be sure you have MS before going that route. The drugs don't make you feel better they are suppose to slow down the progression of the disease by preventing more lesions and damage to the centeral nervous system. From what I understand about the IV steroids, it is given to you when you have an exacerbation to hopefully lesson the duration and damage to the nerve. I have not had this treatment but many on this board have and will be able to tell you (and me) about it.

I wish you the best and hope you get some answers soon.
Melissa

[MelissaQ]

If they rule everything else out and think you are probable MS then possibly they will prescribe a DMD for you.

I am not diagnosed with MS yet. (not that I'm anxious to be) but have been on Rebif for the last 2 yrs.

In my case all else has been ruled out for the most part and studies show if you start a DMD right away, it can slow progression and also slow the time from an initial symptom to a clinical MS diagnosis.

But that's definately something to talk to your physician about. I hope you get some answers soon!!

[MrsBones]

MelissaQ said it all about the DMDs.

Taking steroids for a relapse is really elective. They do not improve the outcome. They just speed you through it. So for something like ON or paralysis, you might take them, but for some mild tingling or something like that, you might just ride it out with symptomatic treatment only. Your doctor may offer it for every relapse. He/she may only offer it for a relapse they think calls for IVSM.

Remember that because it is offered, you don't have to take them and if you think a relapse warrants the IVSM, you can ask for them.

They do have their own risks ( some are pretty nasty)and the common side effects aren't fun. You kind of pick your battles. They wouldn't be used for the symptomatic treatment of day to day recurring symptoms. They work by reducing inflammation in the CNS so they would be ineffective on symptoms that are caused by existing damage.

As far as them working, it's hit or miss. One time you might take them and feel relief in days. The next relapse, they might do nothing but give you the icky IVSM side effects. For some folks, it never works, some it works every time. You should keep in mind though that the more you take them the less they'll work. Again, you have to pick your battles.

[QuickType]

As MrsBones noted, doctors can vary on prescribing steroids. I had 2 fairly severe relapses a few years apart. On the first one, my neuro said I was "too far along" to get steroids, and on the second, he just shook his head when I asked about them. (There was a fairly significant language barrier.) I later switched to a neurologist who specializes more in MS and he was quite surprised that I had not been offered steroids both times. I was simply too sick at the time to insist on getting steroids and my husband didn't know what the right thing to do was.

Speaking for myself, it would take something pretty significant to get me on the steroids, but if I go down in a big way again (eye problems, unable to walk, dizziness, loss of limb function), I'm definitely going to try it and see if it works for me.

There are several topics in the Medications forum that discuss the pros and cons of the DMD medications. They work for some, not for others, and some choose not to take them at all. There is no real way to know how (or IF) they will affect the course of your disease. I have been on Avonex since February, and I don't *know* for sure if it's working. I do know that while I have more day-to-day symptoms since my last exacerbation, before I started taking the medication, I made it through an extremely hot summer without a relapse and most days I feel pretty good. I do think it is a beneficial thing for me, personally, but I completely understand why someone else might make a different decision.