Anyone been to these centers? Going off Copaxone

[monotreme]

I was wondering if anyone on the forum has been to either Jacobs Neuro Center or UT Southwest in Dallas?  UT Southwest has the famous Dr. Frohman.  

Craig is (temporarily??) off Copaxone.  He said he would rather be dead than live with all the nausea and the pain from the injections.  Since he already has daily back and foot pain, the constant nausea was a breaking point.

I talked to the pharmacology staff of the Shared Solutions and they were rather pessimistic in the treatment of PPMS with Copaxone.  They were very honest with me and talked about three studies on PPMS and Copaxone.  At the very most in small studies of less than 50 people, 22 to 25 percent of them showed some disease progression.  However, when they did the ProMISe study in 2002 on almost 2,000 people with PPMS, the study was terminated early since it was clear there would be no statistical significance between the Copaxone and placebo groups.

So Craig is going to Jacobs to talk to the infusion director to talk about their clinical trials.  We want to know this before we see NYU docs again in November.  Jacobs knows this is only a consult and Craig is a  NYU patient.

So, has anyone been to either MS center?

[sllowe]

HI Elaine,

I had no idea he was suffering with this.  I didn't know either that it was a side-effect.  I don't know anything about these centers, but wanted you to know I'm thinking of you both.  How many injections did he make it through?  

I know he's PPMS, but did you look into the Rebif at all for this?  I know on the surface it doesn't mention treatment for PPMS, but I could of sworn that it has been used.  I'll do some digging, see see what I come up with and pass along.

I'm glad you are going to the Director though, sounds promising to me
ttys,
Shell

[yorkieville]

Elaine,

I have to say, just from my experience with drugs, that some are just not worth the side effects.

I feel so heartbroken for Craig and for you and the kids. I am not going to stop praying until he gets well.

I have lost confidence in doctors, entirely.

I'm so frustrated with the whole medical community.

Love & Hugs & Prayers,
Sheila

[LLWB]

I am so sorry the Copaxone didn't work for Craig. There is nothing worse than nausea, caused especially by something that isn't (or doesn't seem to be) helping. My heart crys for both Craig and you, and your family.  You both fought so hard for a diagnosis, and must feel horribly let down that after getting the diagnosis, things haven't gotten better. Just know that your whole forum family are keeping you all in their hearts and prayers.  It must be hard for you to keep us updated, when there is no good news, but we appreciate your taking the time to share with us. We all worry about you all so much.

Many hugs & Prayers, Maggie

[monotreme]

I am sorry...I made a mistake.  In the Copaxone studies with less than 50  people with PPMS, only 22 to 25 percent showed a SLOWING of their disease, not a progression.

In either case, it makes me wonder if the quality of your life is bad and you feel like you can't enjoy your days with all the side effects, is it worth it to go ahead and take the drug anyway??

Thanks for all the support.  It is appreciated.
Elaine

[yorkieville]

Elaine,

   I am so sorry the Copaxone did not help Craig.

   I am praying Jacobs can help Craig.

  Please tell Craig not to give up. Sometimes I feel the same way, but we have to keep hanging on to hope.

Hugs,
Sheila

P.S. Hugs my girls for me.

[Amyloo]

Elaine, my heart breaks for you.  I don't know anything about these centers, but I am sorry about the Copaxone issues.  Don't give up.  Love, Amy