Tagged: MS DMT
- This topic has 41 replies, 18 voices, and was last updated 6 months ago by
John Connor.
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August 15, 2018 at 2:38 pm #12968
Debi Wilson
MemberAre you over 55 years old and deciding if Ocrevus is right for you? Or, are you on Ocrevus already?
Please, share your experiences with us on this MS drug. What are your concerns and hopes for treatment? If you are on Ocrevus, are you having any side effects? How are you feeling?
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August 21, 2018 at 9:19 am #13090
Treva Kirby Adams
ParticipantI’m not yet 52, have RRMS, and I began Ocrevus on Dec. 22, 2017. My first full dose was this June 22nd. Thus far I’ve had no side effects, no infusion reactions, and no issues with illness or infections. In fact, I was exposed to influenza and did not become sick. I do have more energy and stamina – I simply feel better and am enjoying a better quality of life. My son is 31 and has been on O since the Opera clinical trial, with great results and no complications / issues. I realize that every person, every body, and every case of MS is unique but for me Ocrevus has been a blessing and I believe it will continue to be so. If I begin to have challenges with illness then I will certainly weigh the pros and cons again and research any new treatments. For now, I am happy with Ocrevus.
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August 21, 2018 at 10:22 am #13091
Debi Wilson
MemberI’m very happy to hear that Treva! Thank-you for sharing your story! Please, keep us updated on both yours and your son’s Ocrevus journey. I think it will be inspiring!
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August 22, 2018 at 3:43 pm #13130
Mahlon B. Dalley
ParticipantI really enjoyed reading about this topic. As most with PPMS, I was hopeful about Ocrevus. I made an appointment with a new Neurologist member of the local MS Center staff who seems to be the go to person with questions about Ocrevus. She was extremely knowledgable and brought to my attention facts that I overlooked in my research on this drug. Number one was that that the oldest person in the clinical study was 55 years of age. I’m turning 70 next month and of course with older age one is more susceptible to infection which brings up the second fact, that Ocrevus decreases certain B cells (part of the immune system) making one concerned about infection. She also emphasized the fact that in the study for PPMS that showed significant slowing of the disability progression, there was only a 24% less likely to have disability progression for 3 month and only a 25% reduced risk of worsening on the 25-foot walk.
I am still weighing the benefits and risks, but with what I have learned from my research and reading this forum, I probably will forego the treatment at least for a while. I certainly hope that those of you that proceed with the treatment that your endeavor will be successful, and I will be awaiting to hear ,your assessment.
By the way I am glad I have found this forum. I think that it will be instructive and beneficial and I will be exploring the many forums.
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August 23, 2018 at 9:11 am #13156
Ed Tobias
KeymasterHi Mahlon,
Have you asked your neuro about Lemtrada? It attacks selected B and T-cells (Ocrevus only attacks B-cells). My 70th birthday was ten days ago and I was DXed with MS in 1980. Though I’ve never officially been changed from RRMS to SPMS, I haven’t had a relapse (exacerbation) in, I’d guess, over 15 years. However, I’ve steadily gone downhill to the point where I use two canes and an FES for short distances and a scooter for longer.
I’m four months past the second round of Lemtrada and, though it’s been a roller coaster at times, I think my symptoms have improved a little.
I’ve written several columns about my Lemtrada “journey,” which you can find if you go to the main MS News Today website and scroll through my column: The MS Wire.
Please let us know what you wind up doing.
Ed
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September 17, 2018 at 3:10 pm #13509
Ed Tobias
KeymasterHi Mahlon,
How are things going with you? Have you made a decision about Ocrevus yet?
BTW, I like the picture of you in the saddle. I got back on a horse, a few years ago, for the first time since I was a kid and worked with a riding therapist. It made me feel better physically and mentally. Do you still ride?
Ed
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November 13, 2019 at 2:19 pm #18599
Treva Kirby Adams
ParticipantI am now 2 years into treatment with Ocrevus. I do well with the infusions and have no side effects. I haven’t had a relapse in this time and although I may have a symptom once in a while they are usually short-term and mild, triggered by temp changes, stress, etc. I just had brain and thoracic MRI’s. I have no new or active brain lesions and the thoracic is stable – most of the original lesions are no longer active and there are no new ones. My son is about 6 years into Ocrevus treatment and doing well. Like me, he occasionally has symptoms but no relapses and his MRI’s are good. I am 52. he is 33.
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November 13, 2019 at 4:26 pm #18605
Ed Tobias
KeymasterHi Treva,
I’m glad that you’re doing well with Ocrevus, as many are. I’m being treated with Lemtrada and also doing well, I’m happy to say.
Also, I’m sorry that I welcomed you again today. I see that you’ve been a member of the forums for at least a year, so please forgive the double-welcome.
Ed
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August 22, 2018 at 4:17 pm #13131
Debi Wilson
MemberThank-you Mahlon for sharing your comments! It sounds like you and I agree on waiting a bit for Ocrevus. We are glad you are here, and We hope to see more of your posts or topics in the discussions!
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August 23, 2018 at 12:36 pm #13159
Debi Wilson
MemberGood information Ed, Happy Birthday late! 🎈
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August 23, 2018 at 1:32 pm #13161
Jacqueline
ParticipantHope I am not too late….Happy Birthday Ed…
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September 6, 2018 at 1:19 pm #13341
Anonymous
InactiveHi. How old were you when you discovered you have MS?
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September 6, 2018 at 2:13 pm #13342
Ed Tobias
KeymasterHi Valeria,
Welcome to the MS forums. I’m one of the moderators and I hope you’ll participate in many of our discussions.
In answer to your question, I was diagnosed in 1980, when I was 32 years old. My wife says I had MS symptoms for a few years before that.
Ed
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September 6, 2018 at 5:58 pm #13346
Debi Wilson
MemberI was 53 Valeria, but had symptoms many years before diagnosis. What about you?
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September 6, 2018 at 4:08 pm #13343
Phyllis
ParticipantYes, I have had 3 doses of Ocrevus (the initial starter 2 doses and one full dose). The first infusion for PPMS was done at age 59 1/2. The first full dose a week after turning 60. I have also been taking high dose biotin for about one year. My next scheduled in Ocrevus infusion takes place in December 2018.
At that time, I will reevaluate my decision. Thank you for starting this discussion and for your very informative articles.
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September 6, 2018 at 6:04 pm #13347
Debi Wilson
MemberThank-you, Phyllis! I hope you you keep us up-to-date on your progress!
Did you notice feeling better or worse on Biotin? Have you noticed any changes so far on Ocrevus?
Thank-you so much for sharing your journey with us!
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September 7, 2018 at 3:02 am #13359
Anonymous
InactiveI discovered 5 years ago when I was 22. I started the treatment right now because I had a baby but basically I didn’t accept to be sick. But now I start thinking about the future and I’m scared. I’m scared not to be able to take care about my daughter for many years. So I just wanted to know how many years I can live my life normally. What’s your experience? How do you live your life after many years with MS?
Thank you
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September 7, 2018 at 9:31 am #13370
Ed Tobias
KeymasterValeria,
I was diagnosed when I was 32 years old. Our son was only 2. I’m now 70, our son is 39 and we have grandchildren who are 2 and 4 years old.
I worked, full-time, until I retired 5 1/2 years ago. I’ve traveled all over the world for work and for pleasure. I now use a cane and a scooter to help me get around but my life has been good and continues to be good.
MS is not the end of the world. It effects everyone differently but you can, also, live a good life.
Ed
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November 9, 2018 at 10:16 am #14243
Steven Whitson
BlockedYes and yes I am 57 and working on getting started on Ocrevus my doc said it was going to be awhile to get it because of medicare and medicaid paying for it.I have not been on any medication’s for ms in 3 years because none of it seemed to me slowed the progression down.
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November 9, 2018 at 10:37 am #14245
Debi Wilson
MemberThat is exciting for you Steven, please keep us up-to-date on how it goes for you and how you feel!
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January 25, 2019 at 6:37 am #15482
Steven Whitson
BlockedSo I started on Ocrevus Monday Jan.21,2019 and all went fine with the first half infusion except for a little throat irritation, but I do feel like I have more energy to stand and walk even though I still need a walker and wheelchair to get around but I’ll take what I can get.
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January 25, 2019 at 9:14 am #15495
Debi Wilson
MemberGreat news, Steven. Good luck, and please continue to share your journey with us!
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January 25, 2019 at 9:24 am #15498
Ed Tobias
KeymasterGood deal, Steven. Best of luck with your Ocrevus treatment.
Ed
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November 12, 2019 at 2:00 pm #18570
Quynh-Loan Luong
ParticipantI am 58. I was on Ocrevus when it came out and I was ~55. It didn’t help me. I was downgraded from RMS to SPMS.
Loan
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November 17, 2019 at 9:16 am #18626
Les Whitney
ParticipantI’m 57 (ppms) and I have been on Ocrevus for 4 years.I’m so very happy with it ,No decline at all only improvement for Me. Still carry my cane but seldom use it,much more active and I’m getting stuff done.Brain fog gone almost the old me
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December 12, 2019 at 1:29 pm #18786
OliviaJ
ParticipantI turn 65 in another 8 days. I have PPMS, dx’d in 2001. My neurologist seems indifferent so I saw another for a, well, first opinion and he said he wouldn’t recommend it for me for a list of reasons, my age and disability level among them. I’m in a wheelchair, have no bladder or bowel control and my left leg seems to be a dead weight. I hope I am not beyond hope, but it looks like symptom management is all anyone can help me with.
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December 12, 2019 at 3:48 pm #18790
Ed Tobias
KeymasterHi Olivia,
I’m sorry to hear how much MS has taken away from you. However Ocrevus, Lemtrada and Tysabri are three meds that hold out some hope for stopping progression and, in some cases, reversing symptoms. I don’t know if it will happen for you. I’m 71 and began Lemtrada treatments at 69. My disease isn’t as advanced as yours, but I think Lemtrada has helped my bladder and bowel problems a bit. It may be worth raising the possibility of treatment once again with your neuro.
Ed
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December 12, 2019 at 3:27 pm #18788
Quynh-Loan Luong
ParticipantHi again! My side effects were just minor skin infections. But, Ocreveus didn’t help me. I read on one of the forums that it is more effective with men. I was switched to Mayzent this month – so far so good and easy too – a small pill a day. I am 58 and still limp with a walker (spasticity over half of my body, the other half is weak) . Don’t let them tell you you are too old. Life expectancy is much longer now. An early happy birthday to you!
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December 12, 2019 at 4:09 pm #18792
Quynh-Loan Luong
ParticipantThank you Ed. Now I have been hoping for FDA approval of the PoNS.
Loan
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December 15, 2019 at 11:07 am #18804
Suzy Moore
ParticipantHello, I’m new to this forum, but am especially interested in this thread (and Ocrevus)!
I am 57 and was officially diagnosed with MS only a few years ago (most likely had already transitioned to SPMS by the time I was diagnosed). After lots of health insurance battles, I was approved for and started Tysabri a little over a year ago. However, I seem to decline after each Tysabri infusion. Although I’ve been told (more than once) I may have aged out to benefit from an aggressive DMT (even though I have no other health issues), I’ve been evaluating Ocrevus and Mayzent.
I love reading everyone’s experiences…
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December 16, 2019 at 9:00 am #18806
Ed Tobias
KeymasterSuzy,
I was treated with Tysabri for about 7 years and it worked well for me. I’m not sure what you mean by declining after each infusion. Do you mean you’ve gotten progressively worse? I’ve read reports of people who have felt a slowdown just before they’re due for their next infusion but they bounce back again after their treatment.
Don’t allow your neuro to convince you that you’re too old for an aggressive treatment! I began Lemtrada when I was 69 (I’m now 71). It’s held my progression in check and it seems to have helped, a bit, with my walking, bladder control and bowel regularity.
I wrote a column a couple of months ago about this age bias: https://multiplesclerosisnewstoday.com/columns/2019/10/21/am-i-too-old-for-aggressive-ms-treatment/
Ed
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December 16, 2019 at 9:20 am #18807
John Connor
KeymasterHi All
I’m 62 and started on Ocrevus exactly a year ago.
As a patient columnist I of course wrote about it: Steering My Own Boat and Making a Splash,The Right Hand of Lightness and my latest col Stop in the Name of Leukocytes
It’s been the most effective Disease Modifying Therapy I’ve had. However seems like even Ocrevus isn’t about to stop my active steamroller of MS .
At the moment in limbo – which is a tuf place for us atheists to accept!
Cheers John
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January 20, 2020 at 6:50 pm #19006
Chris
ParticipantI had my first infusion of ocrevus and now feel like i’m fighting the flu. I don’t know if I want to do the second half of the first treatment. Can anyone relate.
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January 21, 2020 at 8:10 am #19007
Tom A
ParticipantThis is in response to Chris and his first infusion- You don’t tell your background (age, number of meds tried, current MS status), but this did show up in my inbox and I wanted to help give you at least some direction. I don’t get that response from Ocrevus, which I’ve only had my first two one half doses of. I am over 55, which this thread addresses. I don’t actually anticipate it will do much for me- I was on betaseron since 1995 and had a great response until my MS went secondary progressive (type = not active but with progression {an oxymoron]). Betaseron is an anti-inflamatory as is Ocrevus, although they work differently with the same outcome- minimizing inflamation which brings on further inflamation and subsequent nerve loss. But I don’t have inflamation seen on MRI. Doc says my strength and coordination may be declining as I am getting older- that is, this is what happens with old MS scarring as one ages, maybe. But to your question as to can anyone relate- I think I can. Betaseron can have some occasional nasty temporary side effects like an 18 hour stretch of the worst flu you’ve ever had. Over the course of the 25 years I took the medicine, I had that occur maybe 20, 25 times, randomly. Easily treatable with Ibuprophen and a thick blanket. But the 25 years of treatment did keep me from having further attacks. So I am left now, at 61, with a much more functional nervous system to help me face the rest of my life. No wheel chair, no cane usually , some fatigue, sometimes I look drunk, and I have to know where the bathrooms are and wear a diaper when I don’t. Things could be much worse. So I relate to the temporary side effect you describe, and my opinion is you have to deal with it. It’s not nearly a big deal as might be the consequences of MS without treatment. If you have no MRI activity, you may want to discuss with your doctor why you are on it. On a side note, do some research on something called Biotin. It may be useful. Best of luck to you and plow ahead. I can relate.
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January 28, 2020 at 10:42 am #19053
Chris
ParticipantHi Tom thanks for getting back to me i’m just getting used to the forum. I was diagnosed not long ago with ppms i’m 57 and as I look back I’ve had symptoms for about 20 yrs. but I just dealt with it. I didn’t think it was anything big just another thing ,and it would go away, I complained to my doctor but all I ever got was (use it or lose it). Now i’m trying to deal with it, its all so very new to me. I was an alcoholic for 32 yrs. but haven’t used drugs or alcohol for 13 yrs. now. I was self medicating my depression and anxiety. I’m going to keep up the treatments I have my second half of my first infusion tomorrow 1/29/20 I just got the flu after the first half. I’m not used to being sick my immune system was great but it was bored and started attacking good stuff like myelin. I really started getting worse after I got rid of hep c I guess my immune system had something to do then. I’ll pray it will work out good for everyone with this weird diesiese.
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February 17, 2020 at 1:10 pm #19193
Lana Moskaluk
ParticipantI am 60 and was taken off Techfidera on November 2019 due to a relapse. I am expected back at the MS Clinic in mid March with a decision on taking Lemtrada, Ocrevus or Cladribine. I spent most of November and December looking at everything I could find on the 3 DMT’s however it is the potential side effects that are stopping me from proceeding. I am not comfortable not knowing what a reduced B cell supply means long term. I don’t want PML either. Cost is not an issue for me thankfully. In the meantime while I continue to feel my decision will be no DMT’s I am trying to eat healthy trying to follow the Wahls Protocol or Dr. Jelineks Overcoming MS. But it’s really challenging. Old habits are hard tochange. I have given up most sugar except for a cup of coffee with 2 sugar each morning. It’s my one firm stance as I want to enjoy a cup of coffee before starting my day. I guess my question is did anyone try food management as a choicebefore deciding these drugs?
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February 17, 2020 at 9:34 pm #19201
Ed Tobias
KeymasterLana,
I’m 71 years old and have lived with MS since 1980. I’m coming up on being two years past my second round of Lemtrada and it’s worked well for me….no disease progression and a few symptoms have improved a little. The side effects have been minimal.
I write occasionally write about my Lemtrada journey in my column, The MS Wire. Here’s my most recent piece. I hope it interests you.
Ed
My Lemtrada Journey: Observations at 18 Months After Round 2
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February 18, 2020 at 10:00 am #19203
Tom A
ParticipantLana above asks “did anyone try food management as a choice before deciding these drugs?” Hello Lana- your post showed up in my inbox this morning, and fits my experience somewhat. So,..back in “the day” (my day) when I first actually reacted to knowing I had MS and actually sought to do something about it (1994-ish), there were steroids and a new drug Betaseron, and that was it. As with most illnesses, there were suggestions for diet including anecdotal reports for “cures”. I found a “Swank Diet” in a book titled “The Multiple Sclerosis Diet Book” (still have it), 1977,87; from earlier publications). You can learn about it by Googling “What is the Swank Diet”. But in a nutshell, it is a very low fat diet with a bit of scientific evidence behind it. I’ve been on low-fat ever since (maybe not as strict now, as Dr. Swank would have liked), and I did 25 years of Betaseron and am on Ocrevus now. (I did well, relatively speaking, combining Steroids, Betaseron and Swank). I haven’t needed steroids since the late 90’s. At the time I had put some weight on anyway, and with a lack of a proven way to go, I went with Swank knowing it couldn’t hurt (most people) to eat low fat. What I liked about Swank was that he had actually tried his best to support his claims scientifically, and at the time I had just graduated with a PhD involving research methods, so it was a step up from anecdotal evidence and hearsay. But having said that, when one is combining various strategies to treat something, scientific rigor is lost and all you have left is the story. So that is “my story”, in part. Yes, I did “food management” along with other treatments, and I had a positive outcome. I did not do “food treatment” alone. I do not believe, anecdotally, that a low fat diet alone would have accomplished more than what Swank found, which was a slight statistically significant decrease in negative outcomes. Generally speaking, my acquired knowledge does not point to diet as more of a cure, for most illnesses, than a placebo controlled tested medication with statistically significant results. Everyone always says “talk to your doctor”. I hope my story helps.
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July 22, 2020 at 11:59 am #19917
Jan Hardee
ParticipantI guess this thread is a little old (no pun intended), but its exactly what I’ve been looking for. I am 65, diagnosed in my early 30’s with RRMS and have always been mostly mildly affected by my symptoms. About 5 years ago, my neurologist suggested I might want to try some of the new drugs to keep symptoms at bay and I agreed. For about 18 months I took Tecfidera, then switched to Ocrevus infusions shortly after it was approved. I’ve had three so far with no side effects. It IS hard to say if it’s doing anything – my symptoms are might have moderately advanced –slightly more noticeable numbness, weakness and balance issues — but nothing extreme. Recently I moved to another state and went to a new neurologist hoping to get the infusions continued. I was stunned when he questioned why I was getting them at my age. He mentioned studies that seemed to indicate they had little effect among elderly patients. I couldn’t really defend their effectiveness since I didn’t know if I was any “better”, but I also didn’t know if my condition might not be worse without them. (He even questioned whether I was sure I HAD MS and ordered another MRI, which did confirm “fairly extensive disease”.) I guess my question to the group is has anyone been counseled against getting Ocrevus infusions because of their age affecting efficacy? I am aware of the impact on the immune system — but isn’t that was the same with Tecfidera and presumably others. Has anyone had any experience quitting Ocrevus infusions? If the doctor is right and the drug is having no effect, I worry about what happens when I stop. Any advice out there?
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July 22, 2020 at 3:53 pm #19924
Ed Tobias
KeymasterHi Jan,
If you’ve read through this whole thread you’ve already read most of what I want to tell you, so I’ll keep it simple. My neuro believes that disease-modifying therapies can be effective for people older than 60. There are some of us old folks who may have decided they’re done with DMTs at this point but I’m not one of them.
I started Lemtrada in December of 2016. It was a roller coaster ride of ups and downs but now, more than two years after my second round of that med I can say that 1) tests show that my disease hasn’t progressed and 2) tests and personal experience show that some symptoms have improved a little, most notably my ability to sleep through the night without waking to pee, or waking only once, and an improvement in bowel regularity.
I’ll be 72 in a little less than a month.
Good luck!
Ed
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September 3, 2020 at 4:30 pm #20052
Lisa Petrilli
ParticipantGreetings!
I’ll be 57 in 2 weeks. I’ll have my first 1/2 dose infusion of Ocrevus on the 18th. I’m RRMS but my disease is getting worse: 3 new lesions, 3 activated old lesions, more symptoms. I’ve been on Abagio since 2016. I have worsening symptoms over the last 6 months so the new lesions weren’t a surprise.
I’ve had MS at least since age 30, maybe longer. I also have Lupus and is fairly well controlled on plaquenil. I do have a lot of pain too.
I hoping that Ocrevus will be a good fit for me.
Thanks for sharing, everyone. It’s hard dealing with this roller-coaster ride of a disease!
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September 4, 2020 at 11:01 am #20053
John Connor
KeymasterHi Lisa
Ocrevus was by far my fave DMT until I could no longer have it due to my low leukocyte level. Reckon Lemtrada first began that damage.
Still did feel better on it…
Good luck
Cheer John
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