MRI next week will likely be dropped from research study

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

MRI next week will likely be dropped from research study

Postby mmpetunia » Sat Aug 10, 2013 6:01 pm

i have been in a research study investigating the effect of high dose vitamin D combined with copaxone. in april of this year i relapsed at least once and had symptoms up until a couple of weeks ago. the study docs have already mentioned that i will likely be dropped from the study to "pursue other treatments" (ie: you're screwing up our data so we are kicking you out). i'm a bit relieved, as i'm pretty disillusioned with the DMD situation anyways. however, i'm not sure what i should do next. diets and supplements only? LDN? oral med? Gilenya was mentioned... i will not do another injectable med. can anyone point me to that study that showed that the interferons were not effective in reducing disability over time? i'd like to read it.

gilenya is scary since there have been a few deaths but tecfidera and PML have me a little bit more nervous. i know there are some treatments using chemo but my ultimate goal is a stem cell transplant so i don't want to do anything that could affect the chemo regimen prior to transplant. i won't be ready for that for a few years so i need something to buy me time. argh.

i want to go into my appointment prepared to discuss treatments that i think would work for me. can someone repost that chart that showed all of the medications and their effectiveness and risk profiles too?
Dx: 9/8/11 RRMS
Gluten and dairy free diet
copaxone x3: let's hope the third time is the charm!
http://mylaceybrain.wordpress.com
mmpetunia
Family Member
 
Posts: 99
Joined: Fri Dec 21, 2012 2:21 pm
Location: SF

Advertisement

Re: MRI next week will likely be dropped from research study

Postby CaliReader » Wed Aug 14, 2013 8:31 pm

Do you mean the chart from this post?

general-discussion-f1/topic21682.html
CaliReader
Family Elder
 
Posts: 182
Joined: Fri Nov 02, 2012 4:30 pm

Re: MRI next week will likely be dropped from research study

Postby euphoniaa » Thu Aug 15, 2013 3:20 am

mmpetunia wrote:i want to go into my appointment prepared to discuss treatments that i think would work for me. can someone repost that chart that showed all of the medications and their effectiveness and risk profiles too?


Hi mmpetunia,

That chart was also posted in another thread discussion about DMDs in general the other day:
general-discussion-f1/topic22646.html

One problem with the chart is that many of those meds have been renamed since their clinical trials, so in that thread I also posted what those meds are now called and which of the new ones have their own forums here:

BG-12 is now the oral med Tecfidera (has its own forum here)
Rituximab (is found in the Rituxan forum here)
Teriflunomide is now the oral med Aubagio (has its own forum here)
Alemtuzumab, or Campath (has its own forum, soon to be re-named Lemtrada)


I also posted a link to a recent article in MSFocus magazine comparing most of the MS meds:

http://eflip.msfocus.org/Spring2013.htm

Look on page 28 for "Everything You Need to Know about Adverse Reactions Associated with the Disease-Modifying Treatments for Multiple Sclerosis." Tecfidera is reviewed on p. 34.

Good luck in finding a treatment option that works for you!
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
User avatar
euphoniaa
Family Elder
 
Posts: 662
Joined: Sat Jul 15, 2006 3:00 pm
Location: midwest U.S.

Re: MRI next week will likely be dropped from research study

Postby HarryZ » Thu Aug 15, 2013 7:36 am

So many of these drugs claim to reduce the number of white brain matter lesions by a large amount. But we know that there is little if any correlation between white matter lesions and MS symptoms. That's one of the reasons that the progression of MS in the DMDs made in the 90's continues on, virtually unabated despite those wonderful numbers. In the past couple of years the focus of attention has been what is going on in the MS patient's grey matter which is rarely, if ever, monitored in these drug trials. If they based their results on grey matter lesions, these drugs' efficacy would likely be extremely poor.

Harry
User avatar
HarryZ
Family Elder
 
Posts: 2321
Joined: Tue May 25, 2004 3:00 pm
Location: London, ON, Canada

Re: MRI next week will likely be dropped from research study

Postby DrGeoff » Thu Aug 15, 2013 8:08 am

Any well-run study using real live people should have a set of exclusion criteria established before it starts.
Typically "Any participant whose scores are more that 3 Standard Deviations from the mean will be excluded".
I have used that one myself in the past.

You could have been dropped from the study without being excluded from the results. If (say) the hypothesis was that participants on a high dose of Vit D would not have a relapse, then your having one would mean that you became a tick in one box, and there was no need for you to continue.

As for what you could do next:
Any of the first line DMDs (interferons or Copaxone) is supposed to reduce both the the frequency and strength of relapses (as set out in the table that others have provided). I wqould not want to try anything other than a first line DMD to begin with. Add a good diet, not neccessarily one of the "High Publicity" ones. Add LDN if you want to but do be clear why you are doing it (and some people have added LDN to a first line DMD and are pleased). Do not go for anything without checking out the side effects. Just be really clear why you make any decision.

Geoff
DrGeoff
Family Member
 
Posts: 51
Joined: Mon Aug 05, 2013 3:44 am

Re: MRI next week will likely be dropped from research study

Postby mmpetunia » Thu Aug 15, 2013 11:45 am

Thanks for the links I will check the charts out. As far as the study it is a double blind randomized controlled study and I met the inclusion criteria at the beginning of the study and I did not have any of the exclusion criteria met at the time. I do understand that I am just a tick in a box, just being a bit facetious. :) I'm already on copaxone but the injections are truly not for me. I've never been good at taking medications and I thought the importance of the DMD would motivate me but it doesn't. I've stumbled around with the med quite a bit... Bottom line it just doesn't work for me. I'm not super convinced that dmd's are even useful but I will take what I can get to get me to a stem cell transplant.
Dx: 9/8/11 RRMS
Gluten and dairy free diet
copaxone x3: let's hope the third time is the charm!
http://mylaceybrain.wordpress.com
mmpetunia
Family Member
 
Posts: 99
Joined: Fri Dec 21, 2012 2:21 pm
Location: SF


Return to General Discussion

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users