Brand New MS diagnosis. Tell me about this high dose solumedrol.

[Otirrod]

HI, So I was diagnosed last wednesday. And the doctor gave me the option of doing the 5 day course of 1g solumedrol. Today will be day 5 and I feel no different. (If not worse). So my main question is: what symptoms might this help? I haven't had like a sudden event. *I have had chronic pain, chronic tingles to arms lips and nose, depression, fatigue, constipation... for years and months.

Also the fact I am seeing no change is that alarming?

Also how should I expect to feel for the next week?

Also if I had RRMS would I still possibly have the presentation that I had?

Thanks for the support and I am sure many people have already asked all the questions I have, so thanks for the repeat answers. I look forward to the support I can get from people who know how I am feeling.

[jreagan70]

Hi Otirrod:

Also the fact I am seeing no change is that alarming?

No. In the scenario you've described, steroids wouldn't be expected to cause a change.

Steroids are prescribed to knock down active inflammation -- in MS that almost always means a sudden event -- an attack, relapse, exacerbation, flare. If there's no inflammation, they won't help with symptoms.

If you didn't have a sudden event of inflammation, steroids wouldn't be expected to do anything. Your neurologist likely gave you the option of high-dose steroids just to give you the benefit of the doubt and to see if they make a difference in symptoms.

That you're not noticing an improvement in symptoms indicates that your symptoms aren't being caused by inflammation, and the steroids aren't likely to make any difference.

Long-term, chronic symptoms -- years and months -- are caused by nerve damage, not by inflammation, and steroids don't help existing nerve damage.

what symptoms might this help?

Based on your symptoms being long-term and chronic, the steroids aren't likely to help anything. If they do, be happy.

Also if I had RRMS would I still possibly have the presentation that I had?

Possibly, but not very likely. RRMS, by definition, involves relapses -- the sudden events -- and remissions -- periods where inflammation subsides and symptoms get somewhat better. Not every symptom gets better, but something gets somewhat better. No relapses and no remissions doesn't fit the definition of relapsing-remitting, so the presentation would be somewhat different.

Even in RRMS, steroids don't always cause symptoms to resolve during treatment. If they do, it's great. If they don't, the best they do is shorten the duration of the relapse, and that's not guaranteed. But, by definition, remissions involve some kind of improvement. If there isn't, it's an indication that RRMS has moved into secondary progressive.

Also how should I expect to feel for the next week?

You might feel pretty awful or you might not. (If not, be happy.) Your muscles and joints might ache, you might have a headache. What goes in must come out, so you may go through a couple of days where you pee a lot to get rid of retained water, and your bladder might be a bit irritated during that time. You might have some gastro-intestinal upset. You might stay a bit hyper from the steroids for a few more days or you might feel exhausted. You might just feel unwell and flu-ish. And your sleep might be disrupted for several more days. If it hasn't happened yet, food might lose it's taste. Other things might happen as well.

Steroids have a range of short-term and long-term side effects. So if they don't help your symptoms, there probably isn't any point in you taking them again.

All of this is important to discuss with your neurologist. It forms the basis of how you and your neuro decide to manage your symptoms.

[palmtree]

There is another parameter and that is that a 5 day course of a gram of Solumedrol can leave us so sleep deprived that our MS symptoms can temporarily worsen even though the steroids are addressing the inflammation.

So, in the beginning, if you can tolerate the side effects, steroids are empirically part of the regimen for most of us.

[dastardly]

Hi Otirroid I have had solumedrol twice now both times my legs stopped working the first was the most successful I attended the hospital in a wheelchair the a day or so later I attended using a walker then just a cane I couldn't believe the results going from a chair to just using a cane for balance in a few days, Im unsure what they use this treatment for but jreagan70 explanation should help good luck on your journey Craig

[zilphia01]

read, read and read some more

My suggestion for your new diagnosis is to read and read and read some more. When I was first diagnosed, I read on this (and other) forums for previously asked questions that had been answered. You will find a search in the upper right hand corner of this page. Mine looks like a magnifying lens.

I read some books, but really found most answers on the forums. I found incredible emotional support on this forum, without the polly anna attitude that everything would be ok. This can be a difficult disease, but WE CAN DO THIS! Good luck finding the answers you are looking for, and God Bless.

karen

[Mamabug]

HI, So I was diagnosed last wednesday. And the doctor gave me the option of doing the 5 day course of 1g solumedrol. Today will be day 5 and I feel no different. (If not worse). Yup; steroids have lots of yucky side effects.

So my main question is: what symptoms might this help? Steroids will help the symptoms of a flare go away, often back to your pre-flare status, but not always. But, if you aren't in a flare, I wouldn't expect steroids to help with residual symptoms, such as the chronic pain, chronic tingles, depression, fatigue, constipation, if you experience those all the time.

I haven't had like a sudden event. *I have had chronic pain, chronic tingles to arms lips and nose, depression, fatigue, constipation... for years and months.

You haven't had a "sudden event"? No flare / exacerbation? I've never had steroids prescribed except for a flare. And, yeah. What jreagan said. If you aren't having inflammation (which causes a flare), then I wouldn't expect the steroids to help.

Also the fact I am seeing no change is that alarming? I wouldn't expect the steroids to help.

Also how should I expect to feel for the next week? Are you on a taper, following your 5-day course? That might make a difference in how you feel.

Also if I had RRMS would I still possibly have the presentation that I had? RRMS is characterized by periods of remission (sometimes long periods of remission) and occasional periods of relapses (flares). It sounds like you aren't in a flare right now, since you report no sudden events. Have you had flares in the past? Did your doctor tell you what your MS dx is?

Thanks for the support and I am sure many people have already asked all the questions I have, so thanks for the repeat answers. I look forward to the support I can get from people who know how I am feeling. I'd recommend requesting some meds for symptom management. There are medications to treat the symptoms you are dealing with. Or, if you have a health food store with knowledgeable staff, sometimes supplements can help you to manage some of those symptoms.

Best wishes!

[MarkLavelle]

HI, So I was diagnosed last wednesday.
[...]
Also if I had RRMS would I still possibly have the presentation that I had?

I'm a little surprised no one has asked: Was your diagnosis done by an MS specialist? General neurologists are often not up-to-date about proper diagnosis or treatment of MS...