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Primary Progressive MS

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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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.

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Thank you for responding !

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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

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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!

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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.

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Yes the Gabapentin and Lyrica does work but I take 900 mg 3 times a day

Thanks for the information and reply

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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

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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

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Thanks for your post

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The bare foot works the best for me too!

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 5 minutes agoshortyPPMS

G'day All,

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

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And the US is spiraling towards socialized medicine. More gov't involvement means more regulations and less treatment options. I'm sorry my friend.

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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.

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Some evidence for you Shannon

Class War

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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Facebook

Twitter

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

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Amen!

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Thanks for the reply

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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.

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I agree. Same story,same pain. Going to try cbd or mix of medical marijuana. Sad you need to treat pain and Ms with different meds.

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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.

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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.)

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I have never heard of it. I will look into it. Thanks for the information.

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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.

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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.

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Has the copaxone helped you or has the ms continued to take its course?

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It has helped. Like I said I've only had one event in 5 years. I believe it has help my ms to not get worse.

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Chris,

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.

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Thanks for the info!

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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!

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What is DX?

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I see. Thanks

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DX is for diagnosis. Hope that helps.

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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.

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Can I ask how AMPYRA really helps you?

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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.

I treasure my Ampyra

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AGREE!

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Thank you

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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!

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Thanks for the info

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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.

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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

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Hello Chris my neurologist tells me ocrevis is is the drug for us considering it, I also have PPMS, GOOD LUCK!

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In my research, ocrevus is the only for primary. Pain is another story. I also will look at stem cell and clinical.

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