Copaxone to Ocrevus?

I am really struggling with the decision on whether to switch treatment to Ocrevus. I have been on Copaxone since 2001 and have been doing relatively well. My doctor is recommending I switch treatment as I have been having issues lately mainly with the amount of walking I can do before my leg starts to drag after about 2.5 miles of walking and some cognitive issues as well, although I don't think this new drug will help with that issue. Concerned about the side effects and the fact that it is relatively new on the market and not a lot of data. I have tested positive for JC but at a low exposure. I am hoping to get some insight from others. I am wondering also what other drugs are out there with less side effects that have been found to be effective. I asked my doctor about Retuximab (sp. ??) but he said is generally not approved for treating MS. It seems a much better safety profile :-)

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  • cgladdin Hi. I have been receiving Riuximab infusions since 2015. I have SPMS. Your doctor is correct that it is off label for MS. Because of that, my insurance refused to cover it. I went through the appeals process and once all denials were received, my doctor's office contacted Genentech and I applied for assistance from them. I received the assistance approval and I have only had to pay the cost of the infusion center. That is a savings of approximately $36,000 per year!

    I hope this is helpful to you and I wish you the very best in finding the right medication to help you.

    Kitsey

  • Thanks for your response, Kitsey. I feel like my doctor is too excited about this new drug and it definitely makes me uncomfortable. Thinking about getting a second opinion, however, I don't think that my doctor would appreciate that and I do consider him to be one of the best MS specialists probably in the country so that's why I am so torn. Thank you again :-).

  • cgladdin Hi again. I totally understand your concern regarding upsetting your doctor. My neuro is Dr. Saud Sadiq down at the Tisch MS Center of New York. He wrote an article regarding Ocrelizumab (ocrevus) that you and your neuro might find interesting. You can go to tischms.org and look in the News tab for the 2017 archive. The article is dated May 8, 2017. I hope this is helpful to you. Please believe that it isn't my intention to influence you one way or the other. I just want to share info that is available. I wouldn't have known this if I wasn't a patient. I wish you all the very best!😊

  • Hi, Kitsey, Thanks for sharing the link to that article from Dr. Sadiq. I do plan to share that with my neuro. His initial reaction was a dismissal that the insurance companies won't approve, however, I am sure that he has patients currently on Rituximab since that medication has been out for quite some time. I am meeting again with him next month and I do have very good health insurance thankfully, and it seems to me he should be able to make a case for Rituximab on my behalf. Thank you again for sharing the link and the site as well. Caroline

  • cgladdin I wish you all the very best in finding the right medicine for you. I'm so glad that you have good insurance. That will help reduce some stress. Please keep us posted as to how you are doing. I, and I'm positive all others, will be interested to know how you move forward 😉 Kitsey

  • Hi, Kitsey. Be careful with the drug co. assistance. If you have commercial insurance, you will be OK to continue getting the drug from the manufacturer, but if you end up on a govt. assisted plan such as Medicare Part D, make sure that your insurer will not cover the drug or you could end up ineligible for continued assistance from the drug manufacturer.

  • Sukie427 Thanks very much for info regarding the drug company assistance. I am currently on commercial insurance and will be changing to Medicare next June. The neurologist's office made me aware of the issue when I was there last April.

    I worked in Employee Benefits for 25 years and I'm glad I'm not doing it any longer. Everything has become so difficult and care has suffered.

  • I was a labor and employment lawyer for 35 years, 3 of those after having been diagnosed with the MS. I have a nasty little devil lesion on my brain stem that has severely hampered my mobility and all the other lesions on the brain and cord that basically killed my ability to multi-task and wiped out enough of my memory to the point where I had to quit as I could no longer litigate cases. I have been an activist to get Congress to amend the Social Security Act's anti-kickback provision which would clear the way for people on these exorbitantly priced specialty drugs for rare and orphan disease who must rely on government assisted health plans to get the financial assistance they need directly from the drug companies. I posted a petition on change.org and it has been on this post many times, but for anyone who hasn't seen it I will post the link again. If the link doesn't work, and you care to sign the petition, just copy and paste the link into your web browser and it will take you to the petition so you can sign.

  • Here's the link to the petition.

    change.org/p/united-states-...

    medium=copylink&utm_campaign=share_petition

  • Sukie427 i just opened the link and realized that I had signed it earlier. I would be happy to help in anyway you suggest to get Congress to change the way drugs are handled. Please let me know how where I could read more to better understand the issue. I have no problem contacting my Senator and Congressman. I appreciate any guidance you can provide!😉

  • How ironic is that???? You can google the anti-kickback statute, which is cited as 42 USC Section 1320a-7b(b). If that's too legal for you, just google Medicare Part D and financial assistance for patients from drug makers or manufacturers. You can also search the Medicare website at Medicare.gov. There's a lot out there on it, and it's been all over this website many times. Calling your Congressional reps and senators might help, as you can tell them the problem that you're having or going to have because of being on Part D, and then ask for help, but we really need signatures. If you could forward the link to all of your social media and email contacts that would help a lot. 54,000 is a good number but we're looking for 100,000. I tried to schedule a meeting in DC (I was a US govt atty there when I first began practicing law in the late 1970s) and received no response from any of the decision makers who have the power to effectuate change. So the more signatures we get, the better off we are. In the meantime, I wish you well on whatever drug you decide to go on, and in having an easy time getting it.

  • Hi, Kitsey . I just posted the link to the petition. Good luck. If you can keep your commercial insurance as your Medigap policy, then do it. As long as your RX plan is commercial, you shouldn't run into conflict with the Social Security anti-kickback provision problems. If you can't keep your commercial insurance as your Medigap policy, which you can't if you got it through Obamacare, the best way I have found to handle this problem before we can get the law changed (LOL, but we keep trying) is to pick a Part D plan which DOES NOT COVER the drug. Then, when your dr. prescribes it, don't let them call a specialty pharmacy to get it for you. Have them either give you a script and you call the manufacturer's assistance program or have them call the assistance program and simply state that the drug has been prescribed for you but that your RX plan won't cover it. Then the assistance program should verify with the plan that the drug isn't covered, and that should be the end of it.

    Please understand that the above is NOT legal advice. I am no longer eligible to practice law in any State. This is simply the experience that I have had in trying to get financial assistance for myself and why I wrote the petition. If you need legal advice, then seek help from a licensed attorney in your state.

    Thanks.

    Sukie427

  • Sukie427 I totally understand and appreciate that your comments are not legal advice. One of the few people with whom I remained in touch after leaving a company after 19 years was the attorney who handled HR and benefits. She is a friend and we always had each other's back😉

  • Thanks, Kitsey, you know how it is. Since I am no longer licensed, I am required to put in a disclaimer or I could be committing a felony. Wouldn't that be fantastic? Maybe if I ended up a convicted felon in the prison system they'd have to get me my Tecfidera and Acthar!!!!!

  • cgladdin, I can't answer your question, but want to welcome you. I don't believe we've met...and Kitsey, I don't recall meeting you either! So a warm welcome to both of you. We hope to 'see' you both here often. I'm sure others, personally familiar with Copaxone and Ocrevus, will join this conversation. Best wishes as you consider your options. 💕

  • Thank you, Tutu. I appreciate the welcome. This is the first time I have posted anything and I think this is a good site to gain better insights into all things MS :-)

  • Tutu Hi. Thanks for the welcome. I have been reading the posts on this site for a few months and find the members to be so brave in their dealing with MS. I appreciate the opportunity to learn more about MS and how it impacts people so differently.

  • Welcome cgladdin and kitsey. Glad you found us. You found the greatest ms site there is. But I guess I'm a little partial to the wonderful caring compassionate knowledgeable people I've met here. Join right in and make yourselves at home.

    God bless you both.

    Donnie

  • That the same for me.

    ssdw1958

  • @cgladdin and @kitsey

    Welcome to both of you! Glad you've joined us! 😀 @Doubled51 is exactly right so I won't repeat what he said, or what @Tutu said, or others... , but welcome, and I hope to hear more from both of you!

    Cgladdin, I did want to make one small comment. You mentioned that you didn't expect Ocrevus to impact the cognitive changes you noticed. I'm not sure what the reasoning is behind this conclusion, but, in all likelihood, the cognitive changes are related (at least in part) to your MS. Your DMT should impact this aspect of MS too, whatever you take.

    Cognitive function measurements are not used as primary endpoints for most DMT clinical trials, but that doesn't mean that cognitive function is not affected.

    I have mostly spinal lesions and some brainstem, but few cerebral cortex lesions. I made the mistake of discounting cognitive changes as not being related to MS because I don't have brain lesions. Wrong! There is clearly disease affecting my my brain even though it can't be seen on MRI. Anyway, in case this is your thinking too, I wanted to clarify that.

    Best wishes on discerning which DMT you will be on. Rituxan and Ocrevus are nearly identical. Kitsey, I would think that, given the choice between Ocrevus (approved for MS, 65K/yr) and Rituxan (not approved specifically for MS, 8K/yr), your insurance would opt for the cheaper drug?

    Rituxan has been around a lot longer, certainly, at approx 20 yrs. Less breast cancer risk than Ocrevus.

    Ok. Enough from me! 🙄

    Please let us know how you're doing! 😀

    Lisa

  • Thanks for your reply, Lisa. I just haven't heard enough about how the MS medications, in general, improve cognitive functions. It seems the focus is, and rightly so, on other functions. I also have had a lot of job stress and long hours so I'm sure that also contributes to the cognition issues :-).

  • @cgladdin

    I'm sure you will weigh the pros and cons carefully and I wish you all the best with whichever direction you choose to go in!

    At the risk of sounding like a major mother hen here, I imagine you know that working long hours and under a lot of stress will have a detrimental effect on your MS? 😯 Okay, that's all I'm gonna say. I wish someone made me realize that years ago! 🙂

    Lisa 🐓 Lol.

  • Thanks, Lisa, Yes I realize the detrimental effects and hoping to find a less stressful job if possible :-)

  • cgladdin

    That's great. I'm rooting for you, on all fronts! :)

  • cgladdin, welcome! I understand your feelings about switching meds. My neurologist asked what I thought about switching from Copaxone, which I hadn't been taking long, to Ocrevus. I was diagnosed 1 year ago and started Copaxone in January of this year.

    We agreed to wait and see for a while before changing. The early data is very promising, but we felt that if I'm doing relatively well on the Copaxone, and I don't mind the injections, we can afford to wait and watch.

    I'm so happy for those who have started Ocrevus and are seeing improvement, however. You're obviously intelligent and cautious and will make an educated choice. Keep us posted about how you're doing and about your decision.

  • Hi! and thank you for your note. As I mentioned I have been on Copaxone for 16 years and started taking it right after my son was born and he just turned 17 :-). At that time there were very few choices and I have always been thankful that there were no side effects. I think to stay the course for a bit of time while more data becomes available is a very reasonable choice on your part and fortunately, there are many other options at this time if needed. Best wishes to you! Caroline

  • Welcome cgladdin and Kitsey to the group! I see you are getting a lot of responses already. I was on Copaxone from the time I was diagnosed in 2006 until March of this year when I was growing tired of doing the injections...even 3 times a week and I felt I needed a change. I'm now on Tecfidera and so far doing well on it. I need to get blood work done again, hopefully tomorrow I will get that done.

    Again, welcome to this wonderful, caring, and thoughtful community!

    Jessie

  • Thank you for your note, Jessie. And I couldn't agree with you more about this community that I have found. I am so grateful to receive everyone's thoughtful insight and feedback! Caroline

  • Hi there. I'm not sure how much I can actually help. I noticed you sound stressed over the possible switch in medications.

    You stated you have been on Copaxone since 2001... My concerns are. Did you talk to your Dr about being dissatisfied with your current Copaxone or did it seem as though maybe this might be for him (there several reasons why Doctors will bring up changing medications with out you expressing a need for change due to increasing diseases activity.

    With that being said who brought up changing you or him? We're the problems you were experiencing worth the potential negative outcome (since you tested positive for one of the side effects some ppl get while using this new medication) does it really comes down to this. Have you noticed a definite decline in your cognitive abilities worth the risk from this new drug.

    You seem to me like you might be a little more concerned about pleasing your doctor. I say that BC you have been on Copaxone for 16 years and if it's kept you from progressing as it seems it must be or you would have switched way before 16 years.

    I don't know your age some of the cognitive problems are going to hit you at some point in your life. MS or not.

    There is no guarantee that this new drug would help you as much as the Capaxone has. The one thing you do know is you test positive for the infection that this other drug can possibly cause. So really you have a pretty simple decision.

    Is the stress your under due to the cognitive problems you're experiencing and you know without this Dr advice that you need to switch to another...or the thought of switching meds and not knowing how you will respond to it good or bad or if you really need to.

    I say you will know when Copaxone is no longer keeping you as stable as it once did. If you have stress bc your afraid you might not be able to get it and the risk from (I'm sorry I can't remember the brain infection PL? Or something that's not good) the possible side effect is worth it. I've only been on it for about a year. At this point I would not switch but that's just me. You listen to your body you will know when the possible benefit out weighs the risks. I think I said that right. Yes I have really bad cognitive problems. Good luck.

  • Welcome cgladdin and Kitsey . I was on Copaxone for 10 years. My neuro would periodically asked if I had shot fatigue and wanted to change. I always said no. Last year, after having 3 events (defined as more plaques or a relapse) within 6 months, he insisted that I change meds. His criteria to change is 2 events in 1 year. Ocrevus wasn't out yet, and we decided on Gilenya. It seems to be working, but I do worry about the potential side affects. I'm hoping to one day go back on Copaxone.

  • Morning cgladdin & welcome!

    I've been on Copaxone since January 2017 and believe it is helping as a DMT. No real knowledge of Ocrevus.

    But, with reference to the walking issue have you considered Ampyra? I have been on it since last December and I believe it really helps me with walking (and some other issues). I know when I'm taking it regularly I can walk/run a lot further before 'dragging' my right leg or stumbling. I believe I do get some insomnia issues with it, but altering when I take it helps a lot. So now I take it mid-afternoon versus evening but this means when I get up in the 'wee' hours (3-4 AM) I have to take it then to keep it on a 12 hour interval.

    Good luck with your decision, pmbevac

  • cgladdin, you've received lots of good advice but thought I'd pile on. I started having neurological symptoms a little over two years ago but was just officially diagnosed with MS in April of this year and started on Ocrevus in June. I researched extensively and intensively (as is my habit), and as I have some medical background in the mix I speak the language fairly fluently.

    Of all of the materials I studied, this one video presentation by Timothy Vollmer, M.D. probably helped me most in my decision making process. I can't recommend it strongly enough to anyone considering Ocrevus or Rituxan, or looking to compare safety and efficacy statistics of many current MS drugs in general. Be sure to listen all the way through the Q&A at the end. A couple of things jumped out at me from the discussion: one was the late comment that people seem to keep feeling/getting better the longer they're on the drug (Ocrevus), and the comment that any cancer risk may actually be about the same as in the general population. Ocrevus and Rituxan are very close cousins and can be expected to have similar effect. Tim Vollmer is considered one of the leading experts on Ocrevus who was involved in in years of the trials but also heads up a respected MS clinic and is an experienced and active hands-on clinician.

    If your neurologist is an MS specialist I would think he would have been treating patients with rituximab off-label for some time. My specialist has been using it for MS for many years and said he rarely has any trouble getting insurance to approve it for off-label use, but when he occasionally does, Genentech usually gives it to them at no charge. I would have been fine with either drug but was nudged towards ocrelizumab and am happy with the decision so far. I am starting to see definite improvement in a number of areas. Best of luck to you with your decision, and if I can answer any questions I'm happy to try to help. 😊

  • Hi, dianekjs . What great information you have provided! That's my thing before I make any moves--research, research, research! There's so much out there! But sometimes I feel that I get information overload; that's when I pull everything, take it to the neuro, and start asking lots of questions before I make up my own mind!

  • Hi, dianekjs, I thought I already posted a reply, but it doesn't look like I did, so sorry if this happens to be a duplicate as I am still getting familiar with this site. Thank you for sharing the information and the video...it was very helpful and well done!! My doctor does specialize in MS and also runs the clinic at a well-recognized health center, so I am sure he has treated patients with rituximab before Ocrevus came to the market. I have already gotten approval from the insurance company on Ocrevus, however, I am going to ask my doctor again about using rituximab. I hope that he is willing to advocate on my behalf. I am glad to hear that Ocrevus is working well for you as that is encouraging for everyone to know. Thanks again for sharing the information from Dr. Vollmer. Caroline

  • cgladdin, I always think that if it isn't broken, don't fix it. I myself hated Copaxone; I felt as if I were injecting fire ants under my skin and dreaded every evening. It wasn't doing anything for me anyway, so my neuro put me on Tecfidera as soon as it came on the market. There are things to help with your walking, without changing your DMT, such as Ampyra, but it is also not without serious side effects. I had 3 seizures while taking it and I do not have seizures, so they had to stop it. However, if the Ocrevus might work better for you, then it may be worth it. I am not aware of any PML issues with Ocrevus, but that doesn't mean there aren't any. I do know of one case where a patient switched from Tysabri to Ocrevus and got PML but my neuro told me that it had been determined that this patient had actually gotten the PML while on the Tysabri. I, too, am JCV + and I am a high positive---there have been some cases of PML related to Tecfidera but I haven't made any decision to stop it, as it seems to be keeping additional lesions at bay, but the symptoms are still present. You need to sit down and have a heart=to-heart with your dr about why he wants to switch you and get the total info on both drugs that is available...then YOU make the decision based on every bit of information you can get.

  • Hi, Sukie 427. Thank you for your note. Copaxone did work well for me, however, I have had several issues in the last couple of years so I think it is time to move on and try something new. Everyone's concern is the safety profile associated with these new drugs and that's what I expressed to my neuro. He told me that he would recommend Ocrevus to his own sister if needed. I am seeing him in a couple of weeks and will discuss my latest MRI with him and proceed from there. Caroline

  • Good luck, Caroline. Sounds like a plan, and as long as you're satisfied, and it helps, then you've made the right decision. Unfortunately, with this rotten disease, as long as treatment decisions are seriously considered and informed, I don't think any decision can be wrong, because with all these new drugs, it is a lot of trial and error. Keep us posted.

  • cgladdin hello I am in the 4th month of Ocrevus after switching from copaxone. I was only on it for about 2 1/2months but had awful injection site reactions. It was the 3rd dmt I had been on and they all had their own nightmares. I am doing far better with Ocrevus... by a long shot. I am having a few skin issues. Had a out of hand fungal infection I am now getting over (jock itch) but with treatment it's doing much better and other than some weakness that took me a couple weeks to get through after my infusion I am doing good with it. As a matter of fact I am fixin' to start some much awaited physical therapy!!! Yeah!!! It's not gping to be a walk in the park but I want to try and regain some of what I have lost. If you check out my posts I have been trying to keep regular ones coming. I am also JC positive enough so to keep me from tysabri. Hope all goes well for you too

    Allen

  • Hi, Allen, thanks for your note and very glad to hear you are doing well with the Ocrevus. I will look out for your future posts on the site. I think Tysabri would definitely not be an option for me either. Caroline

  • Hi cgladdin

    My name is Lisa. I was diagnosed with MS in 1995 and have run the course of many meds. I am currently on tysabri and have been for about 15 yrs and will probably change within the year to Ocrevus as it is similar. I have to strongly advice you to seriously consider what your Dr is advising. In earlier years drugs like you're on now were great as they were first real MS drugs around and slowed progression, however fast forward to the newest class of meds and they are unmatched in that they halt the progression of the disease by stopping new lesions. I have learned thru speaking with ppl at BWH in Boston that insurance co are going to be slowly phasing out the older tear drugs because of the success of the major 3 newest first tear ones. So plz, from someone that was in a wheelchair at one point, always used a cane, could not drive for 11 years, frontal lobe was lit up with countless lesions repeatedly, Tysabri has allowed me to walk without any cane, Ive been able to drive short distances, and have had no new lesions since Ive been on it almost 15 years plz plz consider DR recommendation I don’t want this disease to turn quickly on you and have you say ……what the heck just happened

    I am happy however that copoxone has worked relatively well for you for so long as it has for so many ppl. My funny story about copoxone is when I went on it years ago it put me in the hospital for 11 days with the most bizarre rash ever. Im not making light of MS situation I’ve simply learned to laugh at some thing along the way

    good luck

    Lisa

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