I have been diagnosed with Primary Progressive MS! I have suffered from the symptoms for 4-5 years. I currently take high doses of Gabapentin, Lyrica and Baclofen to control the pain and muscle weakness. My doctor wants me to take Copaxone as she states they have good success with the drug. My research finds there is no known drug on the market for PPMS. Copaxone is designed for Replasing MS and I cannot find any information that stated this drug helps slow down the progression of PPMS. Copaxone lowers your immune system which concerns me.
Does anybody know if Copaxone slows down PPMS or any other drugs that will help me. I have balance, numbness, burning tingling pains in legs and arms?
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Chris_Percival
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You're right. Copaxone is for RRMS. It might help to slow the progression of your condition, but will not help with spasms or tingling. There is a new drug for PPMS that is waiting for FDA approval. Should be ready by end of year. I think it is called Orecvus. The name of the clinical study was Oratorio. This drug is an infusion that is given a few times a year.
Hi, my name is Pat. I know Ocrevus is the most recent for primary MS but what is important is learning what it does to your B cells. With MS there are other issues such as bowels,bladder, pain, spasms. Complications happen as we listen to our bodies and find the right specialist to meet your needs. Keep asking and use your resources. Elder care- agency for healthcare. Call and read latest on any drug taken. Multiple Sclerosis has many resources but only you can trust a specialist to provide for you. I was offered a narcotics from pain management but I need to discuss this with appropriate medication.
Wish I was more positive but I am learning every day. I believe we can grow in managing a QUALITY of care no matter who we are ,where we live or how much money we have. BELIEVE! Talk soon and take care of ALL of You!!!!
I agree with you! There are no current therapeutic treatments for ppms. Research is being done but no proven methods yet. I take Aubagio for progressive relapsing MS and I am restricted due to my low immune system. Hopefully soon there will be a valid treatment for you. Take care
Thanks for the reply. That is the reason I don't want to take drugs that lower the immune system. I feel if you do, you might get an invader into your body That does more damage. After all the posts I read, everybody taking disease modifying drugs, nobody is getting any better. Quality of life each day seems better than drugs with side effects!
Yes, as another person already mentioned, Ocrelizumab is expected to be approved around the end of this year. My neurologist told me about it, and at an MS conference this past Saturday, the guest neurologists talked about it too. If approved as expected, it will be for RRMS and PPMS too. It sounds quite hopeful!
Does the gabaoentin help with the tingling and other sensory issues? It helps mine, but I know we all are different.
I pray you get some relief from your current symptoms and that help for your progressive course is right around the corner.
Hi I am sorry for the diagnosis of PPMS, I have SPMS and the doctor kept me on Copaxone, it does not seem to cause any harm so I keep going. I have remove myself from Baclofen because of the constipation and cut back on Gabapentin because aspirin worked better. I also have balance (walker and crutches), numbness, burning in my feet, tingling in my legs and hands. I have been testing different things for my foot burning (That is why the doctor put me on Gabapentin) just try rubbing them with aspercream and go bare foot, it seems to be working for me. That is why I cut way back on Gabapentin. I have been diagnosed since 2008. I am learning the doctors have the best intentions but not always the best answers. Good luck
You are right. Cbd is for pain. Not sure doctors want to say this. Medical field is scary,not sure where is good. Cleveland clinic helped me after ten years. Sad
You are lucky you are not in Australia. I have PPMS and there are no approved treatments for it here except Baclofen for spasm (ineffective which is why most spinal patients smoke dope). The makers of Ibudilast and Ocrelisumab (Ocrevus) are not even considering the Australian market because it is too small.
The main cause of delays in the availability of these treatments now is our out dated
and corrupted regulatory systems. In Australia the Therapeutic Goods Administration
(TGA) will only consider whether to approve a drug if the “sponsor” (the company making
it) “…applies and supplies supporting documentation.” This and 1960’s attitudes to
drugs that have been used recreationally is why so many symptomatic treatments like
Sativex are available in countries such as the USA, Canada, the UK, Spain and New
Zealand but not here.
My experience since diagnosis of Primary Progressive Multiple Sclerosis (PPMS) 7 years
ago has convinced me that our regulatory system for approval of medical treatments
involving drugs is in serious need of reform. It was originally conceived as a
protection for the public against snake oil salesmen but the industry was quick to
realize that this could be a restriction on profits and they have been very successful
in debasing it. It has become a system that can be used by industry and governments to
corruptly increase profits.
I have participated in a phase 3 trial of Fingolimod (Gilenya) for 3 years and it has
become obvious that this was a strategy to manipulate the system to extend Novartis’s
patent for, at least, 7 years. You may be aware that this drug was approved for other
types of MS in 2008. Had PPMS been included in the trials at that time it would have
been available, or been shown to be ineffective then. Given that they conducted a phase
3 trial, and that this trial was been extended twice for a year each time, it would
appear that an effect was demonstrated. By excluding 10% of their ‘market’ they have
been able to sell it to 90% of their ‘market’ at $3000/28 days worth for 7 years and
will now be able to claim a new application and so start the clock again on their
patent for 100% of their market and taxpayers will pay for this.
We have had numerous examples of ridiculous restriction on the availability of drugs to
people who need them such as opiates for pain in terminal cancer because they are
addictive and cannabis for pain and nausea in terminal lung cancer because smoking can
cause lung cancer.
I am supportive of research and trials, I have been involved in 3 to date, as I
understand that this, and my illness, is a learning opportunity for all concerned and
necessary for the development of treatments. I do understand though that there are
aspects of the system that range from out dated and ridiculous to the sort of thing
that would normally be associated with organized crime. I think that the MS Advisory
Council should be considering strategies to achieve a comprehensive review and reform
of the aspects of the drug regulatory system that are shown to be unethical
It's not socialized medicine that is to blame. In Australia medical treatment is much more affordable than in the US and is available to everyone regardless of whether you can afford to pay for it or not and it is the insurance industry and companies who run private hospitals who want to get rid of the system. Many doctors bulk bill which means that they are payed directly by Medicare and the patient pays nothing. Public hospital treatment is also free. The problem is the amount of power and control that big companies have. Their only motivation is profits and they run the system for that end, and they do run the system even the regulations. Governments do as they are told because it is big business that pays for their election campaigns and pulls the strings on their puppets when they are in. The answer lies in getting control back into the hands of elected governments and out of the control of wealthy companies who's only interest is making money. They do not care at all about the welfare of the patients, "market", who need their "products". Don't be conned by the arguments about how evil "socialized medicine" is. It benefits everyone including those who couldn't otherwise get medical treatment because they couldn't afford it and is opposed by those who have vested interests in maintaining the present system.
Pharma CEO: We’re in Business of Shareholder Profit, Not Helping the Sick
James Woods | October 9, 2015
Another Pharmaceutical CEO is stepping up to challenge Martin Shkreli as world’s most hated man.
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Last month, Martin Shkreli became a household name. The CEO of Turing Pharmaceuticals is now infamous for raising the price of a newly-acquired drug to $750 a pill. He also explained in an interview that his company was not alone in acquiring drugs currently on the market to raise their price and, in turn, rapidly drive up their stock price.
Enter J. Michael Pearson, The current CEO of Valeant Pharmaceuticals who recently said that his company’s responsibility is to its shareholders, while making no mention of his customers who rely on his drugs to live.
“If products are sort of mispriced and there’s an opportunity, we will act appropriately in terms of doing what I assume our shareholders would like us to do.”
Already this year, Valeant has increased the price of 56 of the drugs in its portfolio an average of 66 percent, highlighted by their recent acquisition, Zegerid, which they promptly raised 550 percent. Not only does this have the unfortunate side effect of placing the price of life-saving drugs out of reach for even moderately-insured people, but it has now begun to call into question the sustainability of this rapidly-spreading business model.
In an interview with CNBC, Pearson defended his business practice of acquiring drugs instead of investing in research and development.
“My primary responsibility is to Valeant shareholders. We can do anything we want to do. We will continue to make acquisitions, we will continue to move forward.”
Since being named CEO in 2008, Valeant has acquired more than 100 drugs and seen their stock price rise more than 1,000 percent with Pearson at the helm. But it appears that all of the public backlash over price gouging of prescription drugs, which has included both Hillary Clinton and Bernie Sanders taking a stance against the practice as a platform in their respective presidential campaigns, has placed the practice under tremendous scrutiny.
The House Committee on Oversight and Government Reform is planning to issue a subpoena for information on recent price increases from both Pearson and Shkreli.
And that pending investigation has sent Valeant’s stock price tumbling more than 27 percent in the last month, which may have shareholders concerned enough to wonder if Pearson pushed too hard for too long.
James Woods ( AKA – JamesFromTheInternet) is an independent journalist based in New York City who can be reached on twitter @JamesFTInternet or via email: jamesftinternet@gmail.com
I'm new to this site. I got diagnosed with PPMS December 2015. I was told by a neurologist that treating PPMS with steroids or any other disease modifying drugs is like trying to put out a wildfire by spitting on it. They are useless. My neuro and I are waiting on Ocrelizimab. It showed 23% effectiveness of reducing the disability levels of PPMS. At least that's what I remember reading and with the cognitive challenges I have it may not be accurate. Lol. It is the first of its kind to show any effectiveness for PPMS. Fingers crossed that it will help us.
A long time ago I read that in a clinical trial Copaxone failed in treating progressive MS. There is a new drug coming out that is the first one actually proven to treat PPMS. I believe that the FDA has already approved it, or it's about to do so. I don't recall the name of it, but I know it's out there. If your neurologist doesn't know about it, find one who specializes in treating MS and she or he will know about it. Good luck.
Is anyone here taking high-dose biotin for progressive MS? My neuro told me to start it about 8 months ago, and I have been--300 mg a day. So far, I haven't noticed much benefit, but I'm still hanging in there with it. There's really no down side to it, and haven't had any side effects. Even if it helps just a little, I guess that's something. When Ocrelizumab comes out, I'd like to try that, too (just hope my insurance will pay for it.)
I'v been on Copaxone for five years. In that time I have only had one event and at which time my doctor had me on steroids everyday for a week. Within 2 to 3 weeks I was back to my MS normal. I live in Southern California and we have a rehab hospital (Casa Colina) that holds a MS class (sponsored by MS Society, no cost) that will teach you how deal with balance and fall issues. Great program and great instructor. Check the MS Society in your location for there schedule of classes. Msconnection.org. Copaxone also has a support group, Shared Solutions, that has resource meeting that you can attend. These meeting share MS information and there are usually about 15-20 MS people attending and sharing there issues and solutions. Check that site also for local MS support groups in your area.
Add this to my above comment. As far as immune goes, I used to get 2 or 3 colds a year. Since I've been on Copaxone I have not had a cold. Amazing, I don't know exactly why, but it's been a nice side effect.
It sounds like you and I are facing a similar journey. The drug PPMS folks are waiting on is Ocrelizumab. Maybe out at the end of the year. Its on a fast track approval - last I heard. I take Gabapentin. I've also had monthly methylprednisone infusions. I just had a Rituxan infusion - usually a drug for Rheumatoid arthritis and Lymphoma. I'm not sure yet if it is effective. It is considered by BCBS as a not yet proven drug for PPMS but may have an impact. However, my understanding is that Rituxan is a sister drug to Ocrelizumab.
I wish I could answer your question about Copaxone. I was Dx with Primary Progressive MS last summer (2015) and realize now I should have been Dx much sooner, possibly many years earlier. I've been taking Aubagio to help with my MS symptoms as well as Amprya to help with walking and balance. I wish you the best with your health and hope you find the information you're looking for!
Hello chris I was dx in 2009 as well my neurologist put me on copaxone until my ms progressed to PPMS in 2014, she stopped copaxone bc she said when u have PPMS the copaxzone doesn't work. she put me on AMPYRA and its the BEST thing for me. it really helps me, GOOD LUCK in the future.
My legs had been weakening and I found myself having attitude of it's not worth all the effort. I wa so slow.
Doctor put me on Ampyra. Within few weeks I could "feel" strength in my walking. I went from 25 seconds to walk a distance to 10.5 seconds. I've been diagnosed with Secondary progressive having rrms previously.
Hello Chris, its knocked down my fatigue by 50%, my walking speed has improved. I have found that AMPYRA has helped me all the way around! It's a blessing!
I have SPMS which also does not respond to any of the ABC drugs. I agree with your findings about Copaxone and SPMS and PPMS, your doctor probably just feels helpless and wants to do something to help you.
Ocrevus is all I heard for primary. I am asking my doc tomorrow. Will send message. Not sure if my insurance takes. I want to try cbd for pain. Expensive
Chris this is Fancy59 Saying Hi and replying to your post. I know Ocrevus is approved for PPMS but I'm unsure what else is Out there on the market today approved for PPMS. I have SPMS And Ocrevus did stop my progression. Talk to your neurologist about it and if he/she won't put you on it get a second opinion because it does help a lot of people. Fancy59.
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The Life We Face With Progressive MS
Progressive Forms of MS
Have sec progressive MS 
Progression - The Leaky Pool Model of MS
Secondary Progressive MS
