Need advice on 1st yearly MRI

[jen673]

It's been a year since diagnosed and just had my new MRI.  It showed 2 new active lesions which concern my neuro and he suggests changing my DMD.  I have taken Copaxone for the past year of which I still have some reactions to.  Any suggestions as to which DMD I should try next?  The neuro would put me on Gilenya if I wanted.  I am concerned that since Copaxone didn't work, that the other injections might not as well.  Not to mention, I am scared to try the them!  lol  I have had mild foot pain/cramping pretty much this past year that comes and goes fairly quickly.   Also the hand tingling/numbness.  What is new is some itching, right eye twitching (currrently), and vibrations.  These have occurred a few times over the past year. My foot pain is worse right now which I am wondering if it's because of the active lesions.  Sorry I am rambling on and on.  Any advice would be appreciated.  I feel so clueless when the neuro leaves it up to me as to what route to take.  lol

Jeny :)

[jen673]

Thanks Sho.  Thanks makes me feel a whole lot more confident with my MS neuro and making the decision to switch.  As of right now I'm leaning towards rebif or Gilenya.  I have not been symptom free since I found out I had ms a year ago.  Is this normal or does it mean I have perm damage?  Maybe the Copaxone hasn't worked at all this past year!  Hopefully a new dmd will make the difference :)
Thank you all!
Jeny

[shoshin]

As has been pointed out, it is really hard to say whether someone is responding optimally to a DMD. However, this report from a 2011 MS neuro meeting talks about recent research that suggest that your neuro is on the right track:

"This study showed that if patients who were treated with the standard front-line disease-modifying therapy, either interferons or glatiramer acetate, experienced gadolinium-enhancing activity while adherent to therapy, the presence of the lesions on MRI 6 months to 1 year after being on treatment was a prognostic indicator of a core response to treatment -- meaning these patients tended to experience more aggressive disease with higher accumulation of disability on Expanded Disability Status Scale (EDSS) in the years to come...

"These data show me that when I start a patient on therapy, it is important to obtain another brain MRI 6 to 12 months into treatment, and if contrast-enhancing lesions are evident at that point, consider a switch in therapy."

http://www.medscape.org/viewarticle/756027_transcript

References:
Romeo M, Martinelli V, Peregoet E, et al. Brain MRI activity after disease-modifying treatment may predict disability progression after 5 years in relapsing-remitting multiple sclerosis patients. Program and abstracts of ECTRIMS/ACTRIMS 2011; October 19-22, 2011; Amsterdam, The Netherlands. Abstract 29.

There is evidence that people who don't respond well to one DMD often do better on another. See http://multiple-sclerosis-research.blogspot.com/2012/02/treatment-swicth-for-suboptimal.html for example.

Glad you have a proactive neuro and good luck with your decision.

sho

[JulesCurd]

Hi Jenny,

I have MS since I was 22 so now going on 19 years. My 40th birthday was one hell of a party!
  I can tell you this all the MS meds have some side effect, nothing going hurt you so bad you go backwards with the MS. Preventing is the best they do and you have to go through the test period and discover what works for you.   I was in the orginal study for the beta interferon stuff.  I have done the rebif, avonex, and a couple of others but Copaxone i have been on for a number of years.  
The one most important factor I had to realize with this wonderful world of  MS is what my lifestyle was and how it effected the MS.  I live in houston so I never go out in the summer it's over 100 degrees here and trust me that can bring on so many problems. Fatique is 2nd for me and stress is 3rd.  so if i stay away from these 3 things everything is 100% better for me.
But after 19 years and all the meds you just have to find out what works for you best. Hope this helps!

Julie

[jen673]

Thank you double vision and all of you for your input.  It has helped me tremendously.  I don't know you guys stay on top it all.  My memory couldn't all this info for long.  Lol. I will definitely let you know what I decide!

))hugs((
Jeny

[SarahL2491]

the new statistics on Tysabri % of 0 relapses are outstanding.  Check into it online at their website.  Just a thought.

Found the Medscape article VERY interesting and an excellent explanation.  Will cut/paste that one for my research folder.

Keep us posted whatever you decide

[doublevision1]

There is an interesting interview on Medscape with Dr. Mark Freedman, one of the leading M researchers in Canada, in which he touches on the dilemma you face re: how to determine sub-optimal treatment response.

I'm enclosing the link and also a blurb from it about the use of MRI in making treatment decisions.  His reference to the MRI as a 'snapshot in time' sounds much like how my neuro explained it to me.



Treatment Optimization for Multiple Sclerosis: An Expert Interview With Mark Freedman, MD


"Medscape:
MRI use for determining an MS patient's disease status has become fairly widespread in some countries. Do you use MRIs in your practice?

Dr. Freedman:
I would never act solely on the results of an MRI. It is nothing more than a snapshot of a moving picture. We know that brain activity can change day by day, if not week by week, and you take 1 snapshot every 6 months. How is that going to provide any information about what has transpired over the entire period? If you take a picture of a patient's brain 6 months into treatment, and it's lit up with all these enhancing lesions, it might have been just a bad day. Two months later, all those lesions might have normalized and the patient might actually be doing quite well. The presence of lesions, however, still represents ongoing disease "activity," which we all agree is not good. But should having an MRI with enhancing lesions carry a greater level of concern than having an attack that affects motor capabilities that don't recover? Most believe not.

It's very easy to misinterpret a single MRI result, and the way the MRI was used in PRISMS and other clinical trials was very different from day-to-day practice. These were sequential scans done every 4-6 weeks that used the same scanner; the patient was positioned in such a way that the brain lined up exactly in 3 dimensions. This enabled investigators to remap every lesion within 1 mm from scan to scan. Only then can one really confirm that it is the same lesion and determine whether a lesion has gotten bigger or smaller, disappeared, or re-enhanced. That's not how MRIs are used today in our regular practice. We do not yet have a scanning protocol for MS that is followed by all clinicians and researchers in Vancouver, Ottawa, and elsewhere. If we do someday, perhaps we will be able to better follow patients with sequential MRI results."


http://www.medscape.org/viewarticle/491641

[doublevision1]

Jen - EDSS is the Expanded Disability Status Scale.  Wiki provoides a decent summary:

http://en.wikipedia.org/wiki/Expanded_Disability_Status_Scale

Typically a patient's EDSS will be mentioned in the neuro evaluation report.  Do you get copies of yours for your own records?  If not, you can ask your neuro to provide them to you.

[sllowe]

I do not experience continued flu-like symptoms from rebif - if anything, the aches and such were nothing compared to the real flu.

[sllowe]

HI Jen,

If it were me, and I had active lesions I'd consider a switch after a years time. Just because one did not stop them, doesn't mean another won't. Like TLC say - copax is a completely different med (it's a peptide) and the others are interferons. Interferons may work for you, or like opie, the Gilenya might.

You don't know til you try :) Don't be scared. Many of us have minimal if any side affects.

It's not uncommon to experience minimal symptoms from active demyelination. But, none-the-less, you are experiencing it, and even if you were symptom free completely, the MRI shows different, and at any given time, you can experience symptoms from that damage.

I wish you well with your switch! Just go for it! Your next med may halt further disease process :)

[jen673]

Hi!  Good questions!  My MRI shows new lesions since last one and 2 active ones which I don't know the location of.  My neuro appt is next week.  I am having stronger symptoms because of it but in comparison to others I'd say are mild.  My left foot pain I believe is dysesthesias because it comes and goes.  There is no injury to it.  I'm having right arm pain and some twitching in my right eye.  My MRI show many brain lesions and 3 spinal lesions which could explain why most of my problems are with my arms and legs.  I've only known I have MS for a year now so a lot of this I'm still learning. Lol. What isEDSS scores? My neuro is leaving it up to me as what med I want to take.  It would be so much easier if he would just recommend one!  It is a crapshoot so how do you decide to go with the shots or something like Gilenya?  I do believe I've had a couple relapses although minor over the past year.   Do the flu like symptoms with the shots ever go away?  Or do you always have them no matter how on them?  

Thanks for your thoughts!

Jeny

[opie74]

I started Gilenya a year ago, and it is working about as well as culd be expected.  I have had 1 relapse this year and the year I was on Betaseron, I had 3 or4.

[doublevision1]

Hi Jeny -

two new lesions in a year doesn't necessarily in and of itself sound concerning to me.  Obviously your neuro knows more than me, lol, but none of the DMDs claim to halt further lesions and flares.  The fact that you have two new lesions doens't necessarily mean your treatment isn't working.  It's tricky...maybe without the Copaxone you'd have 10 new lesions.  Maybe if you'd been on Rebif you'd have none....or, even more new ones than you have on Copaxone.  It IS frustrating because so much of this seems to be a cr@p shoot.

I would think more of the focus ought to be on how you are doing clinically, how you are functioning, has your EDSS score progressed, etc.  Presumably your neuro is of course looking at the whole picture but I just want to throw that out there.  

Hmmm. just noticed you said two new 'active' lesions....are you currently having a flare and is it severe?  From what you describe your symptoms sound indeed troublesome but not severe.  Please know though that I don't mean to minimize your symptoms, just that I don't hear you speaking of difficulty walking, disabling fatigue, vision problems, urinary, etc that might be more obvious signs of treatment failure.  

Your foot pain could be due to new lesions but were other non-MS causes ruled out?  Is the nature of the foot pain typical for MS, eg: dysesthesia or spasticity, or might it be due to something else?  

What part of the brain or spine are the new lesions located?  It's not always possible to trace specific symptoms to specific locations of lesions, but often this can be evident.

All that said, when you say you still have reactions to Copaxone, this is certainly a consideration in weighing the pros and cons of switching treatment.  Many of us have found the side effects of one or another DMD intolerable and had to make a change.  They of course all have side effects and we need to figure out which ones we are most willing to live with.

As for all the rapid fire questions, I don't meant to be nosey and don't feel a need to reply!  My intent was just to provide some questions to go over with your neuro.

[TLC_31]

Copaxone works differently than the other injectibles (the interferons), so please consider trying one of them. They all have potential side effects, but those usually can be mitigated, and they generally have good safety profiles.

Many have done well on Gilenya, although it didn't work for me.