Just back from Nero

[opie74]

I just returned form my Nero exam.  My local Nero had sent me to an MS specialist for a second opinion.  The specialist confermend the Dx in December.  The specialist recommended Rebif or Betaseron (sp?).  He also mentioned a clinical trial.  I had been interrested in the trial med, but I was beginning to get a little nervous.  My local nero said today that he did not think that the trial was a good idea.  I am inclined to agree.  

Anyway I am supoed to start Beta. when the drug company contacts my insurance.  

If anyone else is interrested in the trial, you can follow the link below.  It does not use a plecibo.  The experimantal drug is a lukemia med and the control group is given Rebif.

Ann

http://clinicaltrials.gov/ct2/show/NCT00530348?term=multiple+sclerosis&rank=28&show_locs=Y#locn

[opie74]

Hi again,

My Neuro is a good guy.  The first time that I saw him he ordered a new MRI and spent 4 hours alligning spots from a 2001 film.  I returned a week and a half later to get the Dx.  I am glad that he sent me for a second opinion because he maid his so quickly.  After years of bad films and 3 other nero's (and myself) not wanting to see MS, it kind of came quickly.  

The reason that he did not think that the trial was a good idea for me is: 1.  I have a relatively heavy leision load, 30, but I have ferry few symptoms.  My relaps phases are short; usually under 1 week.  2:  I have two small children.  Drew will be 4 in April and Nathan will be 2 in May.  The drug wipes out a large portion of your immune system, and my boys and the church nersury and little germ machines.  The reason that I resigned my job to stay home was numerous infections in both chldren.  

I was hesatent with the trial because of the side effects: graves, and a platelet problem.  Not to mention, log recovery time form the common cold, complete lack of energy for the first 4 weeks.  The thought of only having treatment once a year was nice.....

Have an awesome weekend!

IFeel like I need tog et out and do something crazy....shile I still can :-)  

[doni54]

Hi Ann,

I just wanted to wish you luck, now that you've had your dx confirmed.  The trial sounds like a good thing.

Take care and keep in touch so we know how you're doing.

doni

[Lulu54]

Hi again, I took a look and that is some study.  The fact that it is in the 3rd round of trials tells us they are expecting significant success and have already proven that with the first two rounds of trials. thanks again for posting that link in case anyone out there is eligible and interested. - lu

[Lulu54]

Greetings Ann,
Making those drug choices are not necessarily straightforward.  I'm glad you talked it over with your doctor.  It can be overwhelming.  

I am all in favor of medical research and clinical trials, but with a disease like MS where a misstep can be devastating and alter your life forever, I think you have to really weigh the possible consequences.  I wanted to do a trial but was rejected because I was too old.  But the trial I wanted to do had no placebo, was in the second phase, and was showing great promise.  I'm interested to look at the link you included - if its the same leukemia drug, it was in the news last fall as holding great promise for MS patients.  

Stay in touch here, ok?  
Lulu

[jensequitur]

Hi, Ann!  Welcome back!  I think Betaseron will be fine for now - it's really six of one, half a dozen of another when it comes to MS drugs.

If you can get into a clinical trial for laquinimod or fingolimod, do it - two thirds of patients in those trials are shown to be relapse free after two years, which is a great statistic.