Primary Progressive MS and Copaxone???
 

I am still trying to learn about MS, but there is so much information that it is quite overwhelming. My new Dr. feels strongly that I have Primary Progressive MS and suggests I try Copaxone. From what I have read, it sounds like Copaxone is more helpful for Relapsing Remitting MS...

I'd love to hear from others with Primary Progressive and what have your experiences been. I live near Minneapolis and am looking for a Dr. that has some personality, because so far I have been seen by two neurologists and have not felt so comfortable with either one.

Hi Amy..
I live near Minneapolis, too (Red Wing)..Which neuro have you seen? My first dx was PPMS, but was put on Rebif, than Copaxone. I'm glad, because after several years I had my first flare a couple months ago (first one I'm sure of, anyway), and this happened a year after I stopped Copaxone. MS is so unpredictable, my neuro really helped me out by not listing it as progressive in my records as insurance won't pay for DMD's for that.

My first diagnosis was RR. Both my doctor and I thought PP from my re-telling of events, but he knew saying PP meant Insurance company wouldn't let me try, and everyone deserves a chance. Did rebif foer two yearsa with no change, he said I could stop. He left my clinic, next two neuros agreed PP. I wish PP was easier for them to research, it gets few clinical trials.

My ENT says her hubby has PPMS, and is on copaxone. Said he has had positive results with it. I was surprised to hear that. She said they have been incorporating it more and more instead of offering no hope. I dont have many stats, I just know someone who is on it.

I have seen two Dr.s from the Minneapolis Clinic of Neurology. Dr. Murphy at the Coon Rapids Clinic. And I have seen Dr. Gary Birnbaum at the Golden Valley Clinic.

I want to find a Dr. that will listen to me, explain things to me and basically have a "good" bedside manner. I don't think that I am asking too much..am I?
Do you have any Dr suggestions for me?

Why in the world would insurance not help for PPMS, but they will for RRMS? That is insane!

DMDs for PPMS?
 

I'm confused by this. It is my understanding that DMDs are not used to treat PPMS. Is it possible that in the instances cited (Rebif and Copaxone), they were prescribed in case it was actually SPMS? (I've read about how SPMS is sometimes mis-dxed as PPMS due to patients not being dxed until they've graduated to that stage, so although progress seems more rapid from the start, it was really that their RRMS did not present enough problems for them to seek a dx.) :confused:

How are you doing with PPMS? I have not had anything disabling yet, just numbness, tremors, muscle spasms and fatigue. I was pretty upset when I had my MRI in February09 compared to the one I had in December08 and they found that I have at least a 1/2 dozen more active lesions in the brain. When they compared my July 2006 (I had nine lesions at that time) to the December 2008, they found that I had at least two dozen more lesions!

I realize that the number of lesions is not as important as the "location" of the lesions, but should I worry about how fast the lesions are multiplying? They also found that I have several in the thoracic and cervical spine too. I'm just trying to absorb all of this, but it can be real difficult some days, like I'm sure you all know.

I'm confused by all of this too! I had my first symptoms come on suddenly in 2006, and even though there were lesions on the brain at that time, I was told not to worry and that if I have more symptoms that I should see a rhuematologist..but was never told why I should see one. I believe that I have been having symptoms well before 2006 and it was only in January 2009 that I was diagnosed with MS, and referred then to a specialist. When I saw the specialist, we met with him for about 20 mins and he said his gut feelining was PPMS and ordered another full set of MRIs. Now he wants to put me on Copaxone, but I have not had any conversations with him about this, only his nurse. I just don't know that I am at the right clinic, even though he very well known in the area, but I am frustrated and confused. i need to find a DR. that knows MS and who will give me the time and care I need to get my questions answered and help me make a good decision on what treatment course is best for me. I spoke to my pharmacy and they told me that Copaxone runs @ $2551/month for a 30 day kit. I cannot afford that!!!

I think Neuros can't really be sure if it's PPMS, so some recommend a DMD. Copaxone could be helpful for you and I hope it is....and I hope you don't have PPMS..:hug:

Would you have to pay for all of the Copaxone? Do you not have any insurance? It could be, that you may qualify for financial help in paying for it.

:hug:

I do have insurance, but it is not the greatest but ok. I actually think that I am within $50 of my deductible this year already anyway, but I didn't want to contact the insurance company, because I don't want them to "label" me as an MS patient yet....maybe I am hoping that this is all a big joke?! :rolleyes:

That's what I thought, Sally, thanks. That said, I DO hate when doctors say PPMS so definitively in these instances, without explaining their thought process behind prescribing a DMD, that it might be SPMS.

Not to confuse the issue any further but I remember someone on another board who thought she had SMPS but had a exacerbation after many years so her dx was reversed back to RRMS.

Do you see a Dr in Minneapolis or in Red Wing?? I am looking for a second opinion and would like to find a Dr. that has been recommended by an actual patient.

Amy, are you sure he said "PPMS" and not just "progressive MS"?

The reason I ask is that they don't normally assess PPMS for the first few years; they would normally expect to see more spinal lesion activity and less brain lesion activity in the beginning, remissions do not occur so much, and "enhancing" lesions are far less prevalent in PPMS.

If it was "progressive RRMS" he meant, then your background seems to make more sense to me.

Cherie

It is my understanding that NO ONE is dx'ed as PPMS until after one year.

The reason is to get a medical history. If it is RRMS, it can take that long for a more accurate assessment.

Plus, the nursing consultant at the MS Specialist said that women usually are in their 40's to 50's at onset and most lesions are located on the spine rather than in the brain.

Your doctor is probably practicing good medicine by starting you on a DMD.:)

Cherie and Aarcyn, I have seen 2 cases of someone being dxed with PPMS right off the bat on another board. I always thought that was strange.

Yeah, it happens . . . and sometimes they are wrong too. :D

This just doesn't seem to add up to PPMS though, does it?

His "gut feeling" is PPMS . . . based on what criteria? :confused: Amy has lots of "enhancing brain lesions", and mentioned nothing about spinal lesions. :confused: She has not progressed significantly in 3 yrs . . . :confused: and he wants to start her on Copaxone. :confused:

Did he do a LP, and how many O-bands were there?

Have you had relapses and remissions (worse, then better periods)? Are you accumulating obvious disability between progression?

Why couldn't this just as easily be "benign" MS . . . at least based on her MS-experience to date?

I just don't see where he is getting his "gut feeling" from . . . but it doesn't sound like he is communicating things to Amy very well either though. That doesn't mean to say that I think he is necessarily wrong . . . I just don't get yet what he is basing his assessment on. :confused:

Cherie

He definately said primary progressive, both my husband and I heard him and asked him what that meant. And because I have not seen this Dr. face to face for more than 30 minutes, and from other suggestions, I am going to look for another opinion. I have too many questions that I don't feel were answered, and not only that, I would have hoped that he would have given information about things I would not have known to ask about, if that makes sense.

Cherie,

I had an LP in January and I am trying to look through my test results regarding the O-bands. I found the following information: Oligoclonal Bands # (abnormal) Present
I have so much "medical lingo" information in my report, is there another term I can look at to find the # of O-bands?

I have not recieved the records from my last set of MRI's yet, so I don't have anything to refer to other than the ones from Dec 08 and July 06. When we were talking with the Dr. about the latest MRI, he said that they also found several lesions in the brain stem and the thoracic and cervical spine. I did not get the feeling that there were a lot.


I am so glad I posted this thread....I am feeling so much better knowing that others feel that the Dr. having such a "hunch" of PPMS so early in my diagnosis may not be the actual case, and that ppms tends not to be diagnosed so quickly. I am feeling much more positive, really. Thank you!

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!!!

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! :hug:

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?

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.

There is ALWAYS Hope!
 

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

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

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! :You-Rock:

I nees to learn how to type again..:o

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

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

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

primary progressive multiple sclerosis and copaxone
 

Amy, I am a 63 year old woman with primary progressive MS. About a month ago, my neurologist convinced me to use copaxone. There have not been any obvious reactions to this medication, but no obvious good is being done either. I do everything to keep myself healthy, including exercising. But so far, the copaxone has not stopped me from getting gradually weaker and weaker. For all I can tell, it may have hastened the progression of the disease rather than slowing it. If anything dramatic happens to me one way or the other, I will try to let you know about it.

Ppms and copaxone
 

Hello Amy,
I've been on copaxone for 12 years, I am 65 and live in Corby England. Was diagnosed at age 50 with ppms. It just beats you down. Have just lost ability to walk. My specaist is trying to ween me off it as there is no medical proof it helps? It is a mental help where there is none. Hope this helps. Keep fighting exercise as much as you.can.
BOB