Some proof that the MS drugs delay disability

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uppitycats
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Date Joined Jun 2005
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   Posted 3/22/2008 10:23 AM (GMT -6)   
I was poking around on the National MS Society web page this morning and found this study:
 
 
It was referenced in the Wisconsin Chapter of the National MS Society newsletter...I don't know if other chapters picked it up or not.  In the WI newsletter it said:
 
"There's been ample proof that Avonex, Betaseron, Rebif and Copaxone decrease both the number of active MS attacks and "silent" damage in the brain or spinal cord as seen on MRI for people with relapsing forms of MS.  Now a team of Canadian researchers has published a review of clinical experience over more than 20 years, before and since DM (disease-modifying) drugs came into use.  According to their estimates, these drugs also delay disability -- significantly."
 
So I went over and checked it out. Pretty interesting!
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Gretchen1
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Date Joined Jan 2007
Total Posts : 3539
   Posted 3/22/2008 5:33 PM (GMT -6)   
Thanks Cat,

This was a great read!! It left me with great hope as to my future with MS. I appreciate you talking the time to post this.

Love and prayers,
Gretchen       co-moderator MS board       diagnosed with MS July 2006


rhondab
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Date Joined Mar 2006
Total Posts : 2146
   Posted 3/22/2008 6:38 PM (GMT -6)   
Wow Uppity!

Thanks!! What a find! This offers real hope for everyone! Thanks for posting!
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
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D'awesome
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Date Joined Oct 2007
Total Posts : 343
   Posted 3/23/2008 8:54 PM (GMT -6)   
great article uppity, for sure! Thanks for the post... but I'm wondering: what if you've been R & R for the past 10-12 yrs and now moved into secondary progressive (this is where I suspect I am now cos nothing's alleviating itself anymore, it happens and it stays on and on and on).... will the DM drugs help still? Or is it a different series of drugs then?
Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~


Gretchen1
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Date Joined Jan 2007
Total Posts : 3539
   Posted 3/23/2008 9:32 PM (GMT -6)   
Deb,
 
Has your neuro told you that you have secondary progressive?? You said you suspect this is where you are because nothing is alleviating itself anymore.  Does this mean you are having symptoms everyday???  Most of us with RRMS have residual symptoms that never go away once the disease has done enough damage to the central nervous system.  For me this happened right after being diagnosed.  If you have had long periods of "normal" during your 10 or 12 years, then you have done very well!! 
 
Secondary Progressive usually means that you no longer flare and you just progressively get worse.  If you are unsure what type of MS you have, you need to ask your doctor or ask a nurse to check your file and see what the doctor has indicated as your type.  Even if you have secondary progressive, there is evidence that disease modifying drugs will help.  Here is a link.
 

uppitycats
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Date Joined Jun 2005
Total Posts : 2135
   Posted 3/24/2008 3:58 AM (GMT -6)   
D'awesome said...
great article uppity, for sure! Thanks for the post... but I'm wondering: what if you've been R & R for the past 10-12 yrs and now moved into secondary progressive (this is where I suspect I am now cos nothing's alleviating itself anymore, it happens and it stays on and on and on).... will the DM drugs help still? Or is it a different series of drugs then?

As Gretchen suggested, you need to be sure that you are really "secondary-progressive" -- talk to your doctor about it -- as residual symptoms are pretty common, even with relapsing-remitting, particularly after several years of flares.
 
But yes, the DM drugs still help.  This article talks a little about that. I've been labeled secondary-progressive for at least 15 years, now and was labeled that before I went on Betaseron. After starting B I had just one serious exacerbation. Note that I still have plenty of symptoms, every day...but no new ones, and no serious flares.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 3/24/2008 5:40 AM (GMT -6)   
That's what I was curious about Uppity, and it's my suspicion at this point, most definitely me and the neuro will be discussing what stage this is all at but I suspect it because it's steadily marched down a progression in the past 2 yrs... where before it was so sporadic it seemed to be miniscule to everyone and I could push thru the pains and aches and miscellaneous things just "disappeared" after a short period. Hard to work with something that "disappears".
 
But I'm wrapping my brain around the medication regimen and want to be educated on these things when we talk because he's already been sending me info on "new studies" his office is part of for research etc... but since he'd dismissed the idea of MS initially, I'd disposed of those offers. Now I know he'll be wanting to discuss meds and I appreciate the input. Thanks again. It's always hopeful to realize you can arrest something even if it's ever so slightly. :)
Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 3/24/2008 5:53 AM (GMT -6)   
I've not even gotten as far as either of you but im either relapsing over and over....its not just reisiduals, im alot like u describe dawesome.

where even a year ago id have 30 day or 60 let ups, the residuals are on and on but at the same time i enter these attacks of severity and worsening w/new and frankly quite too often!!!

i CANT seem to get a month in me of good or only the bad and horrid resiuals. Without a Slam DUNK...BUT i guess this is the R and R part. Mine def fluctuates tons and i do know what an exac feels like from my very first one. I can seperate now what is residual and when it knocks me back down....so i dont know why im having so many pounds. THEY ARE with new symptoms and severe worsening of others and more lately.

Since i had the spastic attack ( i almost prided myself that i came thru it duh) lol.......its left a crapload of stuff but now im flared again with new things and i cant catch my breath for it all.................
(mental fog from it as well)

i think the modifying drugs are great and im so hopeful butttttttt im learning that i cant hadly keep up now. I cant take chewing all those vit' ds (hard to even remember them) AND GET THAT folic acid in me and keep these bowels tamed as new things crack me and my spinal doc flared me lol..........im laffing cuz i cried yesterday til i almost screamed!

Its like even tho its R and R or even if you say ok these are residuals that wont leave....NO i get another DOSE and Double hard........i dont get it (shaking my head)....

I truthfully am beginning to feel as if all that i wanted as PRN is too much for me to remember to do or allow. Its all i can do to "appear" normal in front of others.

Sux to feel this! BUT SIGH......im sure you know.
 
For an example. even with the awful residuals of this past flare ,really my first that was total spasticity and very obvious in that manner, id get an hour of easening of those places....or a break or a lull of not so intense sensations.
 
Now im at a feeling like my backs on fire and limbs are having swords go down them with guess what? spasticity. I can see that these are MS combined things , add the bowel prob of last week and meet the new tendons on top of your feet with cranial headaches and a deaf feeling in one ear when i turn my head...and r and r ...isn't so assuring right now....
Omg add buttcheeks to that (as i type..) along with deadened fingers and yep thats a residual , but omg i really really cant hardly get an ease of major twists or let up of pain...


kiera


Every day brings us closer to what we reach for .........in all things.
 
Kiera

Post Edited (Kiera) : 3/24/2008 5:59:42 AM (GMT-6)


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 3/24/2008 9:02 AM (GMT -6)   

Here is my list of what I call "residual symptoms" that I experience daily.  These are not "new", but have been with me for years. Some of them "get worse" sometimes...intensify...but that's not an "exacerbation", it's still "residual symptoms":

Spasticity of limbs, particularly my legs.  "Big toe" constantly curves up (on both feet); ankles twist, knees flex "back", making standing impossible.  Spasticity in calves sometimes is more pronounced, sometimes less so.  Spasticity in thighs is moderate. Spasticity in groin is constant, and annoying. :) Spasticity around my torso is pretty mild right now (sometimes called the "MS hug") but worsens when I get over-tired, or in summer if I get over-heated.

Numbness and tingling from mid-torso to toes.  This also worsens when I'm fatigued, or too hot.

Weakness in my arms, particularly right arm and hand. I can only hold a pencil (or small tool ) briefly. I always have to watch to be sure I'm holding something (for example, if I pick up a cup of coffee, I have to be sure to watch that I keep holding it, or my hand will "let go" on it's own). This is challenging, as I'm right-handed.  I tell people I can write long enough to sign checks and credit cards...a dangerous thing! :)

If I weren't taking oxybutanin twice a day, I'd not have bladder control.  If I didn't use glycerin suppositories once every couple of days, I'd not have bowel control. Even with those things, bladder and bowel control is "questionable". I have had loss of both at times.

Esophageal spasms. I don't get these daily...but maybe a couple times a week.  Note that this is a "residual symptom" -- just because it doesn't occur daily, doesn't make it a "new exacerbation". That distinction is true for all of these symptoms!  Anyway .. the spasms mean that I'll start to burp/burp/burp and if I can't swallow water sufficiently to "bump open" the spasm, I'll vomit.  (I make a great lunch companion!! :)  )

Fatigue.  Not "pass out or fall asleep" fatigue ...but more an overwhelming sense of "I need to lie down right now", can't deal with another activity, must leave the room and be by myself fatigue.  Again, this doesn't happen daily, but is still a "residual" symptom.

"Remission" in the early stages of MS may in fact mean you'll go for some periods of time without any of these symptoms occuring.  But not always. If you've had a major exacerbation which has damaged your nervous system sufficiently, you'll have these sorts of things to deal with always. That's not a new exacerbation. Like, every time I get constipated, that's not an exacerbation -- it's my mismanagement of my "bowel program". Every time I experience the "MS hug", that's not an exacerbation; it's that I've gotten overtired, or overheated, or am sick with something else, causing that symptom to worsen. Every time I have an esophageal spasm it's not an exacerbation; it's another example of spasticity affecting my body.  And so on.  Do you see the differences?

 

 


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 3/24/2008 10:02 AM (GMT -6)   

Thanks Cat,

This was both validating and informative.  I really never had "normal" health once I was diagnosed.  I have always had residuals as well.  My biggest and most annoying symptom is the constant and ever present vertigo.  I have the sensation of movement on a constant basis.  I have some minor balance issues.  I also have bladder and bowel problems.  I have some mild eye problems - I have trouble tracking left to right with reading, especially small print.  I have leg spasticity especially in my left.  Both of my feet are numb from about the mid shin down. I have some minor foot drop in my left foot.  I have a patch of numbness on the left side of my torso. 

Any or all of these will get worse if I am over tired, fighting a cold or other illness and even allergies.  They will also get worse if I am not careful with my body temperature.  I am for the most part, pretty tolerant of the heat but when I am finally overheated look out!!! lol. 

My flares have been completely obvious.  I have only had three.  The first two were diagnostic and happened before I was officially diagnosed.  The first one was crazy bad and landed me in the hospital for 4 days unable to walk due to severe vertigo.  I could only walk with a wall, a walker or a big sturdy husband or other "man-cane."  After four days in the hospital I was allowed to go home after begging off from rehab!!!  The second flare also sent me to the hospital.  The last one (last spring) knocked me off my feet with severe and deep numbness from the waist down.  I was given 5 days of the lovely solumedrol.  It took 3 months for my new symptoms to cool to a new baseline. 

I feel extremely blessed to have the abilities I still have.  I am hanging in there despite the dreaded disease. 

Thanks for reading all this, I dont' know how helpfu this all was but thanks for letting me share/vent.

Love and prayers, 


Gretchen       co-moderator MS board       diagnosed with MS July 2006


D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 3/24/2008 9:56 PM (GMT -6)   
Actually Cats and Gretchen, it really is helpful to read this because I've wondered exactly what's classified as what... and everything I'm reading falls in line with my stuff too... the problem is that I've pushed thru it for so awful long that it's become second nature for me so that I have to focus on whether it's "normal" or not.
 
Prior to the past 18 -24mos most of my symptoms appeared and disappeared often and quickly without a lot of major discomforts. The initial first foremost symptom was a numb area over my right knee. The second area fell in my feet in the nerves over the big toes with major pain then finally numbness.  Restless legs, GERD, IBS and hypothyroid had all been a part of my life for a long time already so I didn't consider much in those areas until I was finding myself experiencing a regular chronic cycle of diarhea to constipation and back, and upt 3-5 times nightly to pee when before it might be once. Also a deep fatigue that at about 4pm every day I want a nap, I just start yawning and want to crash out. It passes by about 6pm but it's a struggle.
 
Then migraines daily that I just dealt with constant Advil.  And for the most part I'd have really off days sometimes where the room would shift on me suddenly, or I would bump into door jambs, walk "drunk" stumble or trip on flat floors, etc and hubby would just joke about how clutzy I am... so I didn't think anything of it either. And we'd go to the movies and when I'd get up to move my legs wouldn't want to, they'd be like "cement legs" and if I had to depend on just me to walk down the steps to exit without support, I'd fall, the weakness was horrendous and my legs simply weren't working so good but everyone said I was older now so that happens.
 
Then one day,  I spray painted some furniture for about 30 minutes and then went on to school and tried to take notes with my hand using a pen and couldn't write. My hand would not handle the pen properly, the handwriting kept skewing out of control... and my hand tremored. It remained this way through the whole day including during my regular GP visit in which she noticed and asked what's going on and I explained and that was July 2006 when she got concerned and sent me to a neuro in town (one I'd see for the "meningitis" in 2002). By the next day my hand was ok finally and I had my motor skills back. But when I saw him, he did all his tests and history and dx'd me with MS but the MRI's showed no lesion's in the brain so he took back the DX and went after everything else and still had no DX until recently when symptoms have increased to worse numbness of both feet, hands and now the upper right quadrant of my face, Optic neuritis of the right eye, unequal pupils (rt eye larger than the left), absolutely no sexual libido or sensation to speak of, problems with sensation of bowel or bladder at times, swallowing difficulties where while eating I cannot swallow without chasing it with something to drink,( it's like my throat "quits" on me and a gag reflex hits), and one night I awoke myself with my left leg shot straight up in the air at a right angle stiffly pointing to the ceiling... hubby thought I was crazy... I had no idea what I was doing. Lying still for the MRI's caused my arms and legs and most of my back to go totally numb in spasms.
 
And these are just there now... residually, I guess, some days worst than others and always horrible if I push thru the pain and fatigue.  Some days my body feels like it just on fire all over... and I hate hot showers, can't stand heat anymore... it's intolerable.
 
Yet, describing anything to the usual person and their first response is "but I get all that too!" I find it annoying trying to explain yet be understanding of how little they understand. So to read your responses helps greatly. The books help alot but hearing it from others helps more because it's really the same... I can relate. I remember feeling good for several months this spring of '07 and then July 4th weekend, driving home from a family get together, I felt the numbness set into my left arm and nothing would shake it... that was the beginning of this most recent mess of symptoms... helping with christmas lights in December and both hands went numb, feet got tingly like pins and needles half asleep driving me nuts trying to help and walk around... I used to jump a little creepy crawly feelings up the side of my legs now I just lean over and watch NOTHING on my leg as I sense something is there that isn't... normally I'd be fearing a spider crawling up me but so often nothing at is there yet the creepy crawly is doing it's thing up the leg.
 
So thank you for sharing, I do appreciate it... it's helped me... as I keep saying I'm learning. I have a lot of medical experience, medical background and some education yet nothing prepared me for this. Thank you all for your input.
Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~

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