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**gomer** · 03-09-2012, 12:15 AM

Like so many things MS, there is no simple easy answer.

CAN RRMS turn progressive, (SPMS) YES, but not always.
--(secondary progressive multiple sclerosis)--

I am diabetic so not allowed steroids, not even low dose so far.

Gomer Sir Falls-a-lot

**MrsBones** · 03-09-2012, 12:52 AM

Originally posted by Kdm11 View Post

I haven't started medications yet. It's going to be copaxone when I do. So, to my original question/thought. The doctor said it appears that I have RRMS. I've had a problem with my leg in 2008 and the dizziness in 2011. Does RRMS eventually turn into progressive MS? Any information is very much appreciated. Thank you for taking the time to read my ramblings. Stay well. Karen

For the vast majority, yes. Half of those dx'd with RRMS will develop SPMS within 10 years and 90% will develop it in 25 years.

http://www.nationalmssociety.org/abo...urs/index.aspx

**0485c10** · 03-09-2012, 01:35 AM

Difficult question to answer. Primarily because statistics on that question were developed before the MS meds existed. So the effect of the meds are not known yet but likely have improved the currently known statistics...

like before the ms meds existed, ms was likely to shorten a life span on average 6 years. But at a recent conference by the rocky Mountain MS center they reported that statistically there is no difference in the average life span of someone with MS as with someone without MS.

to get some terms defined..
RRMS-Relapse Remitting MS
PPMS-Primary Progressive MS-it starts and remains progressive.
SPMS-Secondary Progressive MS-its 1st stage is RR and then the 2nd stage is progressive.
PRMS-Progressive Relapsing MS-it starts progressive, remains progressives but begins to have relapses with the progression in the 2nd stage.

Before the MS meds: i read that more than 50% of those that start RRMS will become SP within 10 years, 90% within within 25 years.

that means that 10% will remain RR and never progress to SP.

The meds will have improved these stats. The first med betaseron came out in 1993, Avonnex,Rebif sometime between 1993-1996. Copaxone last in 1996.
Tysabri 2005. Gilenya 2011.

Soon BG-12(2012), lemtrada(2013-15?),liquidomid(2014-2016?) All on FDA fast track for approval may be sooner than i estimated.

Previous estimates to SP, before the ms meds existed, don't really let a person know what will happen now. It will take 25 years before we know how the stats have changed. hard question to answer & a good question to ask.

**0485c10** · 03-09-2012, 01:40 AM

I had the pulfrich effect which is caused by optic neuritis, when the lastancy betwen the eyes differs and cause the brain to get different pictures in time from each eye. Causes disorientation.
i was told and given the name of someone i could call that could retrained the brain for that. but steroids took care of the ON and that effects so i never did need to call. i believe it can be done.

**Redwings** · 03-09-2012, 02:45 AM

MS is recognized as being a progressive disease, but the rate of progression is impossible to predict for any individual. Some people progress relentlessly, while some have a mild course over their lifetime and don't seem to progress much at all.

There was an older statistic that indicated that, after about 10 years, 50% of people with relapsing-remitting MS became secondary progressive (that should not be confused with primary progressive). However, that figure has to be put into context and may not even be quotable anymore. That figure means/meant that about 50% don't progress to secondary progressive over 10 years. It includes/included people who didn't convert to secondary progressive for 20 or more years. It includes/included people who never took DMDs.

The advent of new medications over the last 5 or so years, and the new medications on the horizon, are bound to reduce that somewhat. Time will tell. But the trend is for that figure to improve, not get worse.

There is a lot of information about secondary progressive MS available at the website of the National Multiple Sclerosis Society (www.nmss.org). Just do a search for secondary progressive MS.

**0485c10** · 03-09-2012, 03:05 AM

Pros & cons of steroid use.

The first time I used IV steroids, it was 5 days with maybe a 10 day oral taper of prednisone following the IV steroids. after i completed the oral taper my symptoms returned--not being able to use my hands was my big symptom. The doc just prescribed another 10 days of the oral prednisone and then it stayed better. by that time the inflamation was down.

The purpose of steroids is to reduce inflammation faster. When the nerves are demylenated by MS it causes inflamation & it is the inflamation impinging on the nerve that causes the symptoms of a relapse. steroids reduce inflamation faster, but the body would have reduced it on its own, it just would have taken longer to do.

The "taper" of oral prednisone is used because the body normally produces it own steroids, but when the body sees a high external source of steroids, it shuts down it own natural steroid production. The taper is used to gradually decrease the external steroid concentration so the bodies own steroid production gradually starts up.

Usually 3 days of IV steroids is not enough time to cause the bodies natural steroid production to shutdown, so after 3 days of iv steroids the oral taper is not used. But for 5 days its more likely to be followed by an oral taper. I have had 5 days of IV steroids with & without a taper. Without the taper there is an incredible amount of fatigue until the bodies natural steroid production starts back up.

some docs & patients prefer that because its a lot of fatigue over a shorter amount of time, but with the taper there is less fatigue, but still fatigue, over a longer period of time while the taper drags the fatigue out & start up of natural steroid production ...

Quick & dirty on steroids. They reduce the inflamation and resolve the symptoms of the relapse sooner, but they have a negative effect of weakening bones & teeth, messing with blood sugar and they become ineffective after too much use.

That is why a maintenance med like copaxone is needed. Copaxone reduces the frequency and severity of relapses so steroids do not need to be used as often. after i started my MS maintenance med, steroids were much more effective than, before i was on an ms maintenance med.

so judge this as different from any other steroid experience you will have. this is the first steroids experience you have before your on an an MS maintenance med.

**Kdm11** · 03-09-2012, 05:44 AM

Thank you everyone for your response

All your responses are very helpful to me. I am keeping a journal of all the new terms and abbreviations so I know what people are talking about when they post. (I'm sure I won't need my little cheat sheet in a few months)

**Arthur Spooner** · 03-09-2012, 07:48 AM

There s an abbreviations and acronyms thread near the top of the General Questions. I think it s the 5th thread. Like you, I struggled fr ages to keep up until I was shown this thread.

**KarenR** · 03-09-2012, 07:54 AM

Originally posted by Kdm11 View Post

All your responses are very helpful to me. I am keeping a journal of all the new terms and abbreviations so I know what people are talking about when they post. (I'm sure I won't need my little cheat sheet in a few months)

Welcome to MSWorld, Kdm11!

The Abbreviations and Acronyms thread is here:
http://www.msworld.org/forum/showthread.php?t=94606

Be well,

**newbie but goodie** · 03-09-2012, 08:52 PM

I am also recently Dx. On my Dx day my neuro set me up with mega dose steroids. It was a hell of a few days and I only felt a little better afterward but the improvement continued for some time. What has really made me feel better is starting my DMD's (disease managing drug). I chose Copaxone and after 2 months of it, actually feel close to being a normal person.
About the brain retraining: if you are working with areas of your brain that have not suffered axonal damage, then I don't see why you couldnt train it. I've seen bio-feedback offered for everything from pain to smoking cessation to ADHD. MS is a disorder of the CNS (central nervous system) so it seems to make sense that a little brain training is in order.

**onlyairfare** · 03-09-2012, 09:15 PM

FWIW: I have had MS since 1975 and my neurologist (an MS specialist) says I still have RRMS. I have had far less frequent relapses the past 10 years also. I took Copaxone from 2002, when I had a severe relapse, until around 2008 when I decided to stop because of an insurance change that required me to pay $800 per month as a co-pay. My insurance has changed again to one with more reasonable co-pays, but I decided that since I am doing OK I don't want to go back on daily shots.

So there really are some of us who do not, and hopefully may never, go into a progressive form of MS.

**ru4cats** · 03-10-2012, 11:23 AM

Kdm11,
I've included a link to a series of videos from Nov. 11 you might like to watch. I found them really interesting and full of useful info. Since you are newly diagnosed, they should prove useful

http://www.mscenter.org/videos

**Kdm11** · 03-12-2012, 08:44 PM

Great site!

I'm so happy that you've shared this site! Thank you. It is so helpful in understanding the disease.

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Does RRMS eventually become progressive MS?

Does RRMS eventually become progressive MS?

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