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Anyone have experience with Dexamethasone?

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    Anyone have experience with Dexamethasone?

    I've been prescribed Dexamethasone at 160mg a day for three days to help get over a ms flare. Being my first time with any ms treatment, I have yet to take them for several reasons. I don't really know what to expect from side effects and more importantly I'm uncertain about the dangers.

    I'm a month into my first flare, technically I haven't been diagnosed with ms because I have yet to experience a second flare. I'm experiencing numbness in my lower body and hands that make impossible for me to work. So far there has been no signs of my symptoms subsiding.

    I was tested for Lyme's among other things and it came back negative. I've heard the Lyme's is easy to misdiagnosed and easily confused for ms. The fear I have is that steroid treatment for ms flares can be detrimental for people who actually have Lyme's.

    Was it reckless for the doctor to prescribe me steroids this early? Has anyone had issues with Dexamethasone? Any advise is much appreciated. Oh and happy Mother's Day!

    #2
    Hi gbfsfcity:
    Dexamethasone is one of the corticosteroids. If you google "dexamethasone side effects," you'll come up with a lot of information about short- and long-term effects. You're wise to be concerned about the harmful effects of steroids. Because of the nature of steroids, everyone has some issue with them, depending on the dose and length of treatment. Anyone who chooses to take steroids trades off the potential bad effects for the potential good effects. It's an individual decision.

    In your case, your symptoms are bad enough to keep you from working and haven't improved in a month. The purpose of steroids is to try to shorten the duration of your flare. The side effects of dexamethasone are your trade-off for trying for a faster recovery. The most common short-term effects are bloating, insomnia, irritability, and joint and muscle pain (there are others) for a week or two.

    If your doctor has worked you up correctly, ruled out everything else and diagnosed you with clinically isolated syndrome (CIS, all of the criteria of MS are met except for a second attack), then steroid treatment of your flare is an appropriate option. An attack is still an attack, even if it's your first. Your doctor isn't reckless in prescribing steroids "this early." There may even be a benefit. I don't know how this applies to CIS in general, but in the Optic Neuritis Treatment Trial, it was found that subjects treated with high dose steroids had a delay in the conversion to clinically definite MS of up to two years.

    The earlier into a flare steroids are started, the more effective they are (although they sometimes don't help at all). Some doctors won't even prescribe steroids after two weeks because the damage of the flare has already been done. At that point they consider that the risks of the steroids outweigh the possible benefits. That doesn't mean that they won't still be helpful for some people if started later. But the faster they steroids are started, the sooner the inflammation can be squelched and the sooner the healing process can begin.

    If the purpose of steroids is to shorten the duration of a flare, it's counterproductive to wait two or three weeks before starting them. In theory, waiting only adds two or three weeks to the duration. So the longer you wait to decide about dexamethasone, the less effective it's going to be in shortening your flare.

    As a separate -- and perhaps larger -- issue, it's true that there can be some complexities involved in the diagnosis and treatment of Lyme (not Lyme's) disease. If you don't have confidence in the result of your Lyme test, your reluctance to start the dexamethasone is understandable. Ideally, in cases of infection, steroids shouldn't be used without also treating the underlying infection. And with a negative Lyme test, there's no indication for antibiotics.

    If you're not convinced that you don't have Lyme disease, it's time to have a discussion with your doctor about getting retested. If you're really not convinced, you might want to consult with an infectious disease specialist.

    You're already a month into your flare. Steroids might or might not be helpful. There's no way to know. If you add that uncertainty to your doubts about your diagnosis, that's a reasonable basis for not starting the dexamethasone. It depends on how doubtful you are about your diagnosis and what risks you're willing to take to try to get your symptoms to resolve. Whatever it is, it sounds like you'll be more prepared to make a decision after you've talked to your doctor about your concerns.

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