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    #16
    Originally posted by palmtree View Post
    How does Ocre q come out yet? I really want to know because I may have to go Of Tyabri soon.,I will need an alternative soon.
    Depending on where you live, you might be able to get on the Expanded Access program for this drug.

    just google ocrelizumab expanded access.

    let us know how this works out and if you have any other questions.

    good luck!

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      #17
      Thanks, everyone, for the great suggestions ! I am tired of waiting for any treatments. I had Lemtrada infusions, last month ! I'm doing great and feeling great ! No more waiting ! Good luck, everyone !

      Comment


        #18
        Originally posted by alanpgh View Post
        Depending on where you live, you might be able to get on the Expanded Access program for this drug.

        just google ocrelizumab expanded access.

        let us know how this works out and if you have any other questions.

        good luck!
        When you say expanded access do you mean access to the drug before FDA approval.

        Comment


          #19
          Originally posted by palmtree View Post
          When you say expanded access do you mean access to the drug before FDA approval.
          Sounds like it, but not sure. A brief explanation here - https://clinicaltrials.gov/ct2/help/expanded_access
          1st sx '89 Dx '99 w/RRMS - SP since 2010
          Administrator Message Boards/Moderator

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            #20
            Yes, that is what it means.
            Access before official FDA approval.

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              #21
              Ocrevus

              They say it will cost $65,000 per treatment. Does that mean per monthly infusion?
              Will they have co-pay assistance considering most if not all MSers with PPMS do not work.
              I left in love, in laughter, and in truth, and wherever truth, love and laughter abide, I am there in spirit.

              Bill Hicks

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                #22
                Patient Assistance Programs

                Originally posted by durgastiger View Post
                They say it will cost $65,000 per treatment. Does that mean per monthly infusion?
                Will they have co-pay assistance considering most if not all MSers with PPMS do not work.
                Hi durgastiger,

                The drug assistance programs are different for all the the Disease Modifying Therapies, so what exactly what this will be remains to be seen. There are also differences what you can qualify for, whether you have private insurance, or government related insurance (Medicare, Medicaid, or Veteran's), and can include income requirements for eligibility. But, since now Ocrevus has been approved by the FDA as the only DMT available for PPMS, it should be an available option under most, if not ALL, prescription plans. These are excerpts from the National MS Society:

                FDA Approves Ocrevus (Ocrelizumab) for People with Primary Progressive MS or Relapsing MS -- First Disease-Modifying Therapy for Primary Progressive MS


                For more information, people with MS can contact Genentech at: 1-844-OCREVUS (9am-8pm Eastern)

                For people who qualify, Genentech plans to offer patient assistance programs through Genentech Access Solutions: (866) 4ACCESS/(866) 422-2377 or http://www.Genentech-Access.com.

                Comment on Pricing
                The approval of Ocrevus is an exciting milestone for people with primary progressive MS and an encouraging new option for people with relapsing forms of the disease. The National MS Society applauds Genentech for their leadership in setting the wholesale acquisition cost (or list price) of Ocrevus at $65,000 per year -- nearly 20 percent below the current market average for an MS treatment. The continually escalating prices of MS disease-modifying therapies are creating barriers to people with MS getting these life-changing medications. Through its action on Ocrevus, Genentech is changing industry dynamics so that more people can access the life-changing treatments they need to live their best lives. We encourage other companies to follow suit, creating a drug pricing trend that keeps patients first.

                FAQ About FDA Approval of Ocrelizumab – brand name Ocrevus™ – for Primary Progressive and Relapsing Forms of MS

                Q. How is ocrelizumab taken?
                A. Ocrevus is administered by intravenous (into a vein) infusion every 6 months. At the beginning of treatment there are two doses separated by 14 days. After that, there is a single infusion every 6 months.

                Q. When will ocrelizumab be available by prescription?
                A. According to Genentech, people may talk to their MS doctors now about taking Ocrevus. The company expects supplies of the therapy to be available in about two weeks (around the week of April 4, 2017). Accessing the medication also depends on issues related to an individual’s health insurance.

                Q. What if I no longer live in my own home. Can I still get Ocrevus if I live at an assisted living facility or a nursing home?
                A. Whether you live at home or in a facility should not affect your ability to be on Ocrevus. However, insurance coverage may impact access to the medication.

                Q. What will Ocrevus cost?
                A. The list price has been announced as $65,000 per year. However, the price of Ocrevus to an individual who has MS will depend on the provisions of his or her insurance coverage and the degree to which that individual will be eligible for programs designed to assist with out-of-pocket costs.

                Q. What is the National MS Society’s response to the posted price of Ocrevus?
                A. The approval of Ocrevus is an exciting milestone for people with primary progressive MS and an encouraging new option for people with relapsing forms of the disease. The National MS Society applauds Genentech for their leadership in setting the wholesale acquisition cost (or list price) of Ocrevus at $65,000 per year — nearly 20 percent below the current market average for an MS treatment. The continually escalating prices of MS disease-modifying therapies are creating barriers to people with MS getting these life-changing medications. Through its action on Ocrevus, Genentech is changing industry dynamics so that more people can access the life-changing treatments they need to live their best lives. We encourage other companies to follow suit, creating a drug pricing trend that keeps patients first.

                Q. Will my health insurance cover Ocrevus?
                A. Coverage will depend on individual insurance plans. For people who qualify, Genentech plans to offer patient assistance programs through Genentech Access Solutions: (866) 4ACCESS/(866) 422-2377 or http://www.Genentech-Access.com.

                Q. Where can I get information about the support that Genentech will provide to help people gain access to Ocrevus?
                A. Physicians and people with MS can contact Genentech for information about access at Genentech Access Solutions: (866) 4ACCESS/(866) 422-2377 or http://www.Genentech-Access.com.


                http://www.nationalmssociety.org/Abo...izumab)-as-the
                Last edited by Kimba22; 03-29-2017, 05:35 PM.
                Kimba

                “When you change the way you look at things, the things you look at change.” ― Max Planck

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                  #23
                  For all of our PPMS members, I hope you have the opportunity to try this Rx and halt your progression. I know it has been a long wait! I pray you find success. Will look for member updates!

                  Still RRMS diagnosed, but possibly SPMS. Will Stick with Tysabri, but have conversation next neuro appointment in summer.

                  I am really excited that this treatment sounds so promising with fewer risks. Lots of reading to do.
                  Kathy
                  DX 01/06, currently on Tysabri

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                    #24
                    IT WILL BE HERE IN 2 WEEKS

                    It is all over the news. Ocrevus will be on market very soon (in US). I looked up the drug and am curious, SPECIFICALLY, about the JC virus as one of the side effects is PML. I have the JC virus so am quite disheartened at this.
                    Peace to all,
                    LM
                    RRMS 11/11/2005, SPMS 20011 (guess I 'graduated')

                    Comment


                      #25
                      Originally posted by Fishytrout View Post
                      It is all over the news. Ocrevus will be on market very soon (in US). I looked up the drug and am curious, SPECIFICALLY, about the JC virus as one of the side effects is PML. I have the JC virus so am quite disheartened at this.
                      I had an appointment yesterday with my MS specialist and she told me that before I was to start this drug I would have to take the J C virus test again to test for the possibility of PML. She also said that this drug was very similar to the drug Rituxan
                      hunterd/HuntOP/Dave
                      volunteer
                      MS World
                      hunterd@msworld.org
                      PPMS DX 2001

                      "ADAPT AND OVERCOME" - MY COUSIN

                      Comment


                        #26
                        Ocrelizumab

                        Originally posted by lindaincolorado View Post
                        I am excited for ALL of you! I'm still a Tysabri gal every 56 days you know, if it ain't broke don't fix it My best wishes
                        I'm currently on Tysabri and have been since 2013, JCV titres have actually dropped from 430 antibodies Mmol/L to less than 200 which is negative. Saw my neurologist yesterday and he's wanting to start me on Ocrelizumab in October when it's able to be prescribed in this country for pensioner prices. Apparently he's got permission to prescribe, monitor and research 10 patients and he's saved a spot for me. Now originally I was pretty happy about the decision because I'm becoming increasingly nervous about developing PML despite the fact that my JCV titres are negative. The thought of less frequent infusions is also appealing BUT I was told that there's NO risk of developing PML on Ocrelizumab. Now I've read up about it and apart from the more convenient less frequent infusions I am still freaked out by the possibility of fatal side effects. Has anyone on here been in the same situation changing from Natalizumab to Ocrelizumab? If so what are your thoughts and experiences please?

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                          #27
                          Originally posted by RButterworth View Post
                          I'm currently on Tysabri and have been since 2013, JCV titres have actually dropped from 430 antibodies Mmol/L to less than 200 which is negative. Saw my neurologist yesterday and he's wanting to start me on Ocrelizumab in October when it's able to be prescribed in this country for pensioner prices. Apparently he's got permission to prescribe, monitor and research 10 patients and he's saved a spot for me. Now originally I was pretty happy about the decision because I'm becoming increasingly nervous about developing PML despite the fact that my JCV titres are negative. The thought of less frequent infusions is also appealing BUT I was told that there's NO risk of developing PML on Ocrelizumab. Now I've read up about it and apart from the more convenient less frequent infusions I am still freaked out by the possibility of fatal side effects. Has anyone on here been in the same situation changing from Natalizumab to Ocrelizumab? If so what are your thoughts and experiences please?
                          The decision to change meds is up to you and your healthcare team. But, I have a few questions: (Just trying to be helpful.)
                          Has Tysabri been working for you? Have you had new lesions in your MRI's or changes in your MS symptoms?

                          You are JCV negative right now. Correct?

                          If stable on Tysabri and JC negative, did your Neuro suggest a change to Ocrelizumab?

                          Do you know if your Neuro an MS Specialist?

                          Best Wishes!

                          Time

                          Comment


                            #28
                            Results of Ocrevus

                            For those that are using or trying Ocrevus, I have some questions about your results.
                            1. Have your results been good or bad?
                            2. If you have had bad results, what were they?
                            3. If you have seen improvements, how long did it take for them to show up?

                            Comment


                              #29
                              Originally posted by penguins View Post
                              For those that are using or trying Ocrevus, I have some questions about your results.
                              1. Have your results been good or bad?
                              2. If you have had bad results, what were they?
                              3. If you have seen improvements, how long did it take for them to show up?
                              I´m going for infusion no. 3 this week. For me the results have been good- no relapses, return of normal sensation (within weeks of first infusion and I´m counting the split initial dose as one) in a place that had been off since diagnosis in 2011. Had an MRI last week and will hear this week the results of that. Still get muscle spasms, lack of body temperature control, cog fog and fatigue. I highly recommend considering this drug. The only adverse reaction I have had was on the first dose my scalp got itchy near the very end. Other than that, nothing.

                              If you do- treat yourself to one of those travel neck pillows b/c the benadryl treatment knocks ya out and your neck will droop to one side for a long time.

                              I´ve gotten serious about going to yoga and the improvements are very heartening. It is helping with strength, balance and flexibility.

                              Comment


                                #30
                                Originally posted by Temagami View Post
                                I´m going for infusion no. 3 this week. For me the results have been good- no relapses...

                                I´ve gotten serious about going to yoga and the improvements are very heartening. It is helping with strength, balance and flexibility.
                                Wow! That is such a great report! Slowing down MS and improving strength, balance, and flexibility is wonderful! I am thrilled for you!

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