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  #1  
Old 12-10-2013, 02:34 PM
CrystalBlue CrystalBlue is offline
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Question secondary progressive/treatment

I was dx in July 1998 @age 23. I just recently visited the Mayo Clinic to get a second opinion. Just to make sure I was on the right track with my treatment. I have been on Gileyna for the past 2 years.

That is where I found out that I had secondary progressive MS. I was also told there were no treatments for secondary prog. I was told to continue on the same treatment even though it has low likelihood to meaningfully impact this problem. But they still can prevent relapses & new lesions.

Has anyone else been told this?
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  #2  
Old 12-10-2013, 03:10 PM
DebbieB DebbieB is offline
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SPMS

Hi CrystalBlue,

Welcome to MSWorld!

I'm sorry you've recently been diagnosed as Secondary Progressive MS (SPMS). I too have that label. Have had MS since 1988, was diagnosed SPMS about five years ago. It's not uncommon for MSers who have been relapasing-remitting to ultimately go to SPMS.

It's true, there isn't any FDA approved Disease Modifying Drugs (DMDs) for SPMS...however, they ARE approved for SPMS'ers who continue to relapse. See:

http://www.nationalmssociety.org/abo...ted/index.aspx

Unsure if I can post this link (I think I can since it's MS-related), but if it doesn't show, go to nmss.org and search "secondary progressive treatment".

The only treatment that is (theoretically) approved for SPMS is Novantrone (which I know little about).

If you are on Gilenya, and you feel it's working for you and your doc is supportive of you staying on it, I think that's great.

I'm in a research study (double-blind) at Johns Hopkins for the use of Tysabri in Secondary Progressive patients. Since it's double-blind, I don't know if I'm receiving the Tysabri or a placebo, but believe I am receiving the Tysabri (for several reasons).

I look forward to others weighing in...(and please correct me if I'm wrong!).
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  #3  
Old 12-10-2013, 06:57 PM
JerryD JerryD is online now
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Thanks for posting with your story. The sad fact is that there is no FDA approved treatments for progressive forms of MS. And there is little discussion of these forms on these boards. I am dx'd with Primary Progressive MS and I feel I visit my neurologist, twice a year, to have a nice conversation. I commend you for making the trip to the Mayo Clinic and posting about it. Good luck
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  #4  
Old 12-10-2013, 08:11 PM
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hunterd hunterd is online now
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way to go the extra mile to check things out! While it is true that there is no FDA approved treatment for progressive forms of MS, there are whose studies going on to try and remedy this. The big problem is that a lot of these studies are being conducted in Europe. My MS specialist seems to think that secondary purpose may respond to treatment.for the latest trial look at: www.nmss.org then click on clinical trials, there is a trial for progressive forms where they are looking into estriol.

ps.-i am ppms myself
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  #5  
Old 12-11-2013, 11:56 AM
Fed Up Fed Up is offline
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Quote:
Originally Posted by hunterd View Post
way to go the extra mile to check things out! While it is true that there is no FDA approved treatment for progressive forms of MS, there are whose studies going on to try and remedy this. The big problem is that a lot of these studies are being conducted in Europe. My MS specialist seems to think that secondary purpose may respond to treatment.for the latest trial look at: www.nmss.org then click on clinical trials, there is a trial for progressive forms where they are looking into estriol.

ps.-i am ppms myself
Interesting comment on estriol; i was on that for HRT and quit in 2011, which is when my symptoms became overwhelming. fed
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  #6  
Old 12-11-2013, 06:42 PM
CrystalBlue CrystalBlue is offline
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Thank you for your replies. I had done 3 rounds of Novantrone in the beginning, which if I would have known better I would have gotten a second opinion about. Since I had those treatments it limited me to only 1 year of Tysabri, due to the risky side effects. Which is unfortunate because I felt that was helping me.
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  #7  
Old 12-12-2013, 11:39 AM
knuckle knuckle is offline
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There is a clinical trial going on now using Alpha Lipoic Acid for SPMS:

Lipoic Acid for Secondary Progressive Multiple Sclerosis (MS)


http://clinicaltrials.gov/show/NCT01188811

I've been taking 300mg sustained release Alpha Lipoic Acid 2X a day for about three years based on the research I've read.

I did Novantrone 3X followed by 18 infusions of Tysabri. Bad idea. I don't trust neurologists anymore.
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  #8  
Old 12-12-2013, 12:01 PM
misslux misslux is offline
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Quote:
Originally Posted by JerryD View Post
Thanks for posting with your story. The sad fact is that there is no FDA approved treatments for progressive forms of MS. And there is little discussion of these forms on these boards. I am dx'd with Primary Progressive MS and I feel I visit my neurologist, twice a year, to have a nice conversation. I commend you for making the trip to the Mayo Clinic and posting about it. Good luck
My neuro told me last week that there are clinical trials ongoing for PPMS and Gilenya and Tysabri. But it still a few years off and they are both very pricey.

And I am down to once a year neuro visits myself unless something drastically changes.
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  #9  
Old 12-12-2013, 08:58 PM
MSer102 MSer102 is offline
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Quote:
Originally Posted by CrystalBlue View Post
I had done 3 rounds of Novantrone in the beginning, which if I would have known better I would have gotten a second opinion about. Since I had those treatments it limited me to only 1 year of Tysabri, due to the risky side effects.
Crystal if by "in the beginning" you mean back in 1999 or 2000 or so, there wasn't much at the time for you to have gotten a second opinion about. Tysabri wasn't even out yet so there wouldn't have been any possible way for anyone to give a second opinion about how Novantrone would affect anyone's use of a drug that wasn't even available. And even after Tysabri was reintroduced to the market, it was only maybe 5(?) years ago that there was a link established between the risk of PML and previous use of immunosuppressants. Again, that was long after you had been on Novantrone.

The only thing you could have gotten a second opinion about back in 2000 or so was whether or not your MS was bad enough to justify the risks of Novantrone. Nobody could possible have told you anything that would have predicted the future about how it would affect the use of another medicine. So you didn't do anything wrong by not getting a second opinion about Novantrone because the information about what it sounds like you have regrets about - immunosuppressants and Tysabri - simply didn't exist at the time.

I also think it's important to clarify other comments about how there aren't any FDA approved treatments for progressive forms of MS.

The only thing that FDA approval means is that the manufacturer thought they could make enough money from the medicine to spend the enormous amount of money it takes to get through the FDA approval process. There was an article in Forbes magazine awhile ago that said that it costs about 4 [U]billion[/U] dollars to develop a drug and bring it to market.

There are many medicines that are routinely used effectively off label. Even for RRMS. They aren't FDA approved because the manufacturer didn't think it would be profitable to spend all the money needed to get FDA approval for a particular use. The medicines are just as effective in those cases with or without FDA approval.
As a comparison, the makers of Novantrone went for FDA approval. The makers of Cytoxan didn't, yet Cytoxan was and is used for MS in the same way Novantrone is (and without the same risk of heart damage).

The reason there aren't drugs available for progressive forms of MS without relapses has nothing to do with FDA approval. There aren't drugs available because none of them yet exist. There just aren't any. Even off label. If there were effective medications, doctors would be free to prescribe them off label. Even after they stop having relapses a lot of people with MS continue to use their DMD as an off label medicine even though there isn't any proof that it's helping. But for now there's no medicine that has been approved for [U]any[/U] purpose that's been shown to be effective in progressive forms of MS that don't have relapses.

As soon as there is an medicine that's proven through clinical testing to be effective for progressive forms of MS without relapses, it will be the first one so I think it's a good bet the the manufacturer will go for FDA approval.

What FDA approval does influence is whether an insurance company pays for a medicine for a particular use. FDA approval is an "official" indication of effectiveness. Without that insurers are justified in not paying for a medicine since they don't have to pay for something that hasn't been [U]proven[/U] effective for a particular purpose.
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  #10  
Old 12-15-2013, 10:28 AM
JerryD JerryD is online now
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MSer102, thanks for your explanations vis-a- vis treatments for progressive MS. It is very frustrating to sit around knowing that your body is failing and there is very little that medical science can offer. Good luck to all
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  #11  
Old 01-31-2014, 09:16 AM
Doodlebug Doodlebug is offline
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SP drug trial

My MS doc is just starting a drug trial using Sipinomod (sp?) for SP. He doesn't think he'll get enough candidates enrolled.

I have SP and am on Rebif. Doc wants me to switch to Tecfidera because it's more effective.

While there are no treatments for SP, at least what I am doing is "something". Will it keep me from getting worse than I already am? Nobody knows...

I see neuro on Thurs. so if anyone is interested about the trial info I'll get it for you.
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  #12  
Old 02-07-2014, 03:36 PM
ratsuchend ratsuchend is offline
 

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Novantrone vs. Tysabri for SPMS

Hi Crystal Blue,
My testimonial: I participated in the ASCEND stage III clinical trial of Tysabri vs. placebo for SPMS in 2013 (sponsored by Biogen), while I was living in Munich (Germany). According to the doctors administrating the study in Munich, I probably got the Tysabri and not the placebo because of elevated levels of lymphocytes in the blood test after six months in the trial. By that time my condition had worsened substantially and I had to abandon the study and return to Canada. The doctors in Munich, who diagnosed me as having chaged from RRMS to SPMS in mid-2012, recommended that I take Mitoxantrone (Novantrone) and Fampyra, the latter chiefly for my vision problems (optic neuritis and nystagmus). In brief, if I did get the Tysabri, which seems likely, it did nothing for me.

Meanwhile, my neuro in Canada has decided not to recommend Novantrone on account of the side effects. I have since decided I want to take the Novantrone as my symptoms have worsened so much since my last relapse in mid-2012, so contrary to my neuro’s opinion, which I strongly disagree with. It is true that Novantrone carries the risk of cardiotoxicity, but it has been shown in European trials to be a powerful immunosuppressant and was on that basis approved by the FDA. And at this point I am willing to try anything to slow the worsening of my condition. So I reckon that Novantrone is my best option despite the risks. It seems the best thing at present for SPMS.
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