Primary Progressive MS and Copaxone???

DizzyLizzy · 03-07-2009, 10:40 AM

Quote:

Originally Posted by lady_express_44

Yes, O-bands are Oligoclonal bands (I can never remember how to spell it

).

Well, most of us are apparently expected to have O-bands, but sometimes they look at the number of them (2+) to see how much activity there is. The number of O-bands can offer a "hint" as to the disease process going on ... but it's just a hint.

People with PPMS tend to have more spinal lesion disruption, and less inflammatory brain activity . . . at least compared to early RRMS. You seem to have both going on, but he seems to be focusing on the spinal lesions with your dx.

The reason he is focusing there, is because "MRI-noticable" spinal lesions can potentially cause us additional difficulty. (I am one with mostly spinal (big) lesions, so I know how they can be a challenge). Most of us with MS eventually have spinal lesions though (about 75% of us) . . . but they aren't always big or noticable by MRI. When they are noticable on a MRI though, there is probably more chance of having symptoms from them.

Amy, I had one very big spinal lesion for the longest time. If it had been very active, or if the relapses they caused hadn't healed as well as well they did, they probably would have called me PPMS too. Very active spinal lesions just aren't THAT common with MS, so when they see them, they sometimes think the worst.

I am 18 yrs into this and still walking and doing relatively well.

I have a gut feeling you will be too.

Cherie

Thank you! I appreciate everyone's replies so much!!!

DizzyLizzy · 03-07-2009, 11:01 AM

Quote:

Originally Posted by PolarExpress

I see Dr Gareth Parry at Fairview University Clinic (on the U of M campus)..He's very kind, will answer questions honestly and will tell you if he just doesn't know..He also has the benefit of a great MS Nurse (Denise), who has a great sense of humor and will call you back when you leave a message (I hate when doctor's offices don't call back..It's a deal breaker for me)..

Thank you!! I have actually heard of him, but I was spelling his name as "Perry". I work very close to the U of M campus, so I might need to check him out. I appreciate you sharing his name!

dmplaura · 03-07-2009, 12:28 PM

I asked my neuro about this.

He says he will prescribe Copaxone and other DMDs to people with PPMS.

Like previously stated, why give NO hope, you know?

TheSleeper · 03-09-2009, 03:43 PM

I was dx`ed with PPMS right off, but it took them about 3 years to get the correct dx and my medical history showed continuous progression.

Never offered any of the crabs, steroids and or chemo. Just got back from the neuro a few hours ago for my 6 month follow up that I almost stretched out to a year and 1/2.

Not a lot of options and I am still not down with the old ones.

Bearygood · 03-09-2009, 07:35 PM

I just want to clarify that the intention was certainly not to try to take away anyone's hope at all! It was a sincere question about using DMDs to treat PPMS, as I (and others) have been told and read many times that they are ineffective for that type. So... the only thing that seemed to make sense was if the doctor was trying to cover all bases in case it actually was SPMS.

That said, of course I had to do some research about this, especially since Copaxone seemed to be the doctor's choice every time someone mentioned a DMD for PPMS in this thread. And I believe this is the answer below, probably in addition to the possible SPMS theory.

Here are a few links to the PoMISe (aka Promise) trial, which dealt with using Copaxone to treat PPMS. I haven't had time to read everything I found very thoroughly but it seems to have shown some degree of effectiveness in some cases, at least on MRI scans. It doesn't seem to me like the results are incredibly conclusive but I believe this explains why some doctors choose to prescribe it. I did read somewhere (might be in one of these links) that a similar trial was done with Avonex and seemed to have no effect.

Read all three links because surprisingly, it's the 2007 link that makes the strongest case. Of course, there's a lot more information out there on this if anyone is interested in doing more research.

From 2002:
http://www.allbusiness.com/company-a...6004733-1.html

From 2004:
http://www.thisisms.com/article102.html

From 2007:
http://www.drugs.com/clinical_trials...lated-223.html

Also, here is an excerpt from a page on the NMSS site from 2008:

http://www.nationalmssociety.org/cha...ent/index.aspx

Quote:

Q: I have been diagnosed with Primary Progressive MS (PPMS).
Why are there no treatments for PPMS like there are for Relapsing-Remitting MS or even Secondary Progressive MS? It also seems that there is limited information about PPMS.

A: There are two components to ms---the inflammation phase, and the nerve fiber damage phase. Most of what is known about MS, and most of the available treatments, pertain to the inflammation phase. Unfortunately in PPMS that phase is very short, or never exists at all, and one is left with nerve fiber damage, which may be ongoing and slowly cause a loss of functional abilities.But some things are known, and various trials have been ongoing for some years----a trial with copaxone seemed to have some slight promise, and one with retuximab was recently completed. This is an area where stem cell research is liable to have some relevance. So keep up your hopes.

I hope this is information is helpful and also clarifies the intent of questioning the use of Copaxone for PPMS.

DizzyLizzy · 03-09-2009, 09:43 PM

Thank you so much for finding this information!

I am feeling so much support from everyone in this community, and I want you all to know how much I appreciate each and every one of you! I even had a referral to a Dr. in my area and I was able to get an appointment with him on March 23rd! The Dr. responded to an email I left him on Sunday night, even though I was not expecting a repy...he sent me an email this morning and made sure that I was able to get in to see him. If I were to just call up as a new patient, I would not have been able to get an appointment until the end of May! I am looking forward to meeting this Dr., because I actually feel that he will treat me as a person, not just a name on a chart like I've felt with the past two Dr's I've seen. I'm feeling very optimistic, and that is a great feeling!

PolarExpress · 03-11-2009, 05:19 AM

I nees to learn how to type again..

PolarExpress · 03-11-2009, 05:20 AM

Best of luck!!! Let us know how it goes ~

dmplaura · 03-11-2009, 07:26 AM

Quote:

Originally Posted by PolarExpress

I nees to learn how to type again..

That's me every day Polar, and sadly they PAY me at work to type.

AmyB I'm glad you're optimistic and I really hope things work out for you

DizzyLizzy · 03-11-2009, 12:50 PM

Quote:

Originally Posted by PolarExpress

Best of luck!!! Let us know how it goes ~

I will do that! My husband and I are really looking forward to meeting at Dr. with a "heart beat"!

Thread Tools
Show Printable Version Email this Page
Display Modes
Linear Mode Switch to Hybrid Mode Switch to Threaded Mode

Similar Threads
Thread	Thread Starter	Forum	Replies	Last Post
Progressive lenses	Jules A	The Stumble Inn	9	02-14-2009 07:47 PM
A pilot trial of low-dose naltrexone in primary progressive multiple sclerosis.	lady_express_44	Multiple Sclerosis	3	09-26-2008 11:51 AM
Progressive Couplets	Twinkletoes	Games	1058	08-24-2008 11:15 PM
Primary Progressive?	texans88	Multiple Sclerosis	9	05-28-2008 07:51 PM
Primary Progressive??	texans88	New Member Introductions	2	05-27-2008 01:35 PM

Site Navigation

NeuroTalk Online Support Groups

Primary Progressive MS and Copaxone???

NeuroTalk Forums