Deciding if Ocrevus Is Right When You’re Over 55

I am going for my 2nd treatment and I could walk 6 months ago. I asked if this is making me worse. They want to go ahead with 2nd dose.

I started Ocrevus a year ago at age 64. I am having my third infusion later this month. I am not able to weigh in on the benefits, due to the fact that progress/slowing of symptoms is impossible to quantify. PPMS is the type of MS I have, and I have presented absolutely zero side effects from the Ocrevus infusions. I agree with Ms.Wilson, everyone's MS situation is unique. We are truly "fearfully & wonderfully made", and we also all process what is happening to us physically in different ways. Do not abandon hope, any of you reading this! Gary Levene

I'm 51 male. Tried copaxone, tecfedara, rebiff, finally diagnosed ppms. Was in a clinical trial for three years. That's not for people who work for a living! Trial scrapped laquinamod didn't do anything. Has taken me 9 months to get on ocrevus. I have finished my first dose a week ago. Won't know if it works for 6 months or so, but I've got to try something to slow this down!!!!

i was going to start on the 8-14-18 they forgot to tell me i had to stop tecfidera for 6 weeks first oh yea ok she was talking about maybe only the first infusion and see i got the vibe there may be no sense in me taking anything at this point at 62 yrs and maybe shes right she was looking at fresh mris and labs maybe you are right in waiting makes me rethink what i am gonna do Thanks for sharing the info it sure helped me think again takes one to know one Thanks again

I am 65yr old male with PPMS, waiting for 3rd round of Ocrevus. I used to be on Solumedrol infusions of 5x 1000mg every 3 months. Ocrevus took the place of this, alleviating pain in feet and calves and gaining strength in legs. Being able to stop infusions of Solumedrol was in itself a huge benefit. O also gave me the ability to sweat again so I can tolerate heat better, take warmer showers and do some chores without getting so fatigued. Also calming my jittery hands so I can write legibly again. For me O is doing great and I`m glad it came to market. I do read here and other web sites I am on, that some people get adverse reactions and that is a shame. I personally am glad that a drug company is looking at the area of MS that has the fewest infected people, and that possibly this drug may help provide answers to a cure.

I am a 55 yr old female. Did my one and only Ocrevus infusion 1 yr ago. I was optimistic but that was short lived. My walking and dexterity began to decline after infusion so I decided Ocrebus is not for me. I did not have any side effects.

I am so thankful that everyone is sharing the pros and cons of ocrevus :-) I was diagnosed in 2014 at the age of 53. I did a short stint on Tysabri and then was on Gilenya for two years with many relapses and taking many steroids. My neurologist also put me out of work in December of 2016. He spoke to me a lot about the Ocrevus and when it finally came available and my insurance company approved it last October of 2017 I took the first two part infusion. I took my first full infusion in April and I'm scheduled to take my next infusion in October. I have only positive things to say about this infusion as since I began it in October of 2017 I have not had to take any steroids or had any relapses. I have been walking with a cane since I've been diagnosed and I still do but I am convinced that hopefully in the future I will be able to stop using it safely. Yes there are risks to every type of medicine that is out on the market and I realize and feel bad that some people are unable to take it and don't benefit from it. I look forward to the future with all the research going on that hopefully one day additional treatments will be available or even a cure :-)

I am 60 years old and have PPMS - Copaxone failed me miserably and oh my the side affects were the worse! My Neurologist gave me information about Ocrevus and I am waiting now for my next full infusion in a few months (at that time- I have minimal side affects and only a day or two after .. I work full time, use a cane for long distances or uneven surfaces. I used to work in Medical Research .. and currently still in Health Care although a different capacity due to my disease.. I am ok with that! Yes I may lose some B cells but still have T cells which run the whole show! I take 1,000 units of Vitamin D3 daily and 2 womens' vitamins as well as Biotin (I haven't lost any hair in these last years!). I continue to find ways to exercise and eat healthy as I can.. getting enough rest well we all know how that goes .. I am very excited about O.. I believe this is my treatment .. that will help continue a viable productive life.. I have great support at work - friends and family and my Medical Team.. I feel lucky to have so much available .. and looking forward to the next breakthrough ...We all have to find our path whatever that may be as we are all "Snowflakes" ... we are all unique and wonderful.. Peace kt

In the spring of 2009, my husband was diagnosed with diffuse large B-cell Non-Hodgkin's Lymphoma in his left maxillary sinus. He was treated with 3 rounds of R-CHOP ("R" standing for Rituxan) chemotherapy followed by 20 days of radiation to 7 sites around his left eye. During the radiation, is was noted that he had developed a slight foot with his right foot. Upon completion of his treatments, he deemed to be in remission, however, his weakness and foot drop were so severe that he couldn't return to work. Within a couple of months he also developed severe bladder and bowel problems.

At first, it was thought that his problems were due to the cancer and its treatments but as things worsened an MRI was done which showed some lesions in the brain and one in the brain stem but we were told that it was inconclusive. Since then, he has had numerous MRIs which showed no changes and he was deemed "stable" even as his symptoms worsened. Over the last 9 years, the weakness spread up his right leg to his right hand and arm along with increasing fatigue, but, thankfully, with no pain. However, the last MRI done a year ago showed 3 new lesions and his new neurologist now believes he has PPMS and has suggested Ocrevus to treat it.

Like everyone else, after researching it, we have concerns about the side effects, especially with Tom's previous cancer. Has anyone else developed MS following cancer and its treatment? Would love to hear from others in our situation.

Talk to hematologish not neurologist about ocrevus

Being PPMS,had 3rd Ocrevus infusion at 55 last week. Having no side effects is great. Bit better on walking. Chronic nerve pain in L4, low back area is gone instantly. Seems after 4months it starts to fade off. Makes me feel better. Im satisfied.

I am a 60 year old man. I just had my third Ocrevus infusion this past week. I have had a few minor side effects. I have not seen any improvement hoping it will slow progression but who knows if it is. I don't know if I will continue with this or not.

I am a 70 year old male probably with ppms (my “episodes” in the early years were either very mild or not really relapses so it’s probably not secondary progressive). I will see my neurologist in a few weeks presumably to schedule my 3rd Ocrevus infusion. Over the last 14 years I’ve tried 4 other disease-modifying drugs which seemed to have no discernible effect on my slow decline. My impression is that Ocrevus has helped. But it’s been a slow roller coaster. Four months ago, I concluded I was walking better and felt better. Two months ago I was back to my baseline. Over the last 6 weeks I’m back to feeling stronger and better. So if I have a choice, I’ll continue Ocrevus and hope I dodge any side effects. My goal at this age is simply to sustain a good quality of life. Hope this helps.

Thanks for this information. I’m currently on Copaxone, after previously trying Beta seron, and Tysabri. Just not enough real estate to continue the injections. My Neuro is also offering Ocrevus ( I’m progressive MS), and like you have been trying to understand if this is a good fit for me. I came to the same conclusions that perhaps the risks outweigh the benefits for me as well. Plus, I read this too.

http://www.msbrainhealth.org/treatment-decisions/article/efficacy-of-ms-drugs-is-linked-to-age

I am a 57-year-old male. I have been told the exact same thing by to well known MS neurologists.

I am 60 years old and am thankful that Ocrevus was approved for PPMS - I have very few side effects and those only for a few days afterwards. I do walk with a cane for long distances or uneven ground .. I work full time ..am always looking for a way to exercise .. I take my Vitamins and eat healthy .. I feel so much better taking Ocrevus - I was on Copaxone with so many side effects and my symptoms exacerbated and more brain / spinal lesions .. I am truly excited about Ocrevus - I believe this is the right treatment for me as I feel so much better! We are all "Snowflakes" we are all unique and we are all wonderful and Our journeys differ even when they are the same.... I wish you all better health - Peace. kt

I am 77 and will have my third infusion in November. I have PPMS. No side affects and my balance is a little better. It’s nice to dress using both hand again. I have had no infections and was exposed to flu repeatedly last winter and remained healthy. I’m willing to take the chance because my brain has shrunk significantly. The prognosis is dementia and I’m hoping to slow the progression. I was diagnosed in 1994 and this is the first treatment available and it gives me hope.

I am 77 years old and just finished my second dose of Ocrevus..I was diagnosed with PPMS at age 75. I currently have 2 neurologists. One in San Diego where I was diagnosed and 1 that is local. I have not had any side affects from the infusion. Both neurologists have had many patients in their 70s with no side affects on Ocrevus. It has helped my walking a bit but I have been told it could take up to a year to show more progress in walking. The only other MS medication I have used is Ampyra which has also helped with my balance. I don't really suffer from any of the many MS pain, spasticity, heat, or fatigue problems which I am grateful for. I do have a terrific support group in my husband, family, and friends. I do use a Bioness to help with the foot drop on my right weak side.

I am a 57 year old male diagnosed with PPMS and I have declined drastically over the past two years I jumped at the chance to try Ocrevus, it took six months from the date my neurologist prescribed Ocrevus till today my first infusion. I wasn’t prepared for the approval process things like being tested for TB here if your over 50 you have to be tested twice that took three weeks to complete, I had to update all my immunizations, funding was almost three months until finalized. It was definitely not a here’s your prescription go to the pharmacy and get it filled scenario it was a lengthy process for me to get medical clearance for the procedure.

I can’t comment yet on any benefits but would be glad too in the future.

I'm surprised at so many 'senior citizens' commented on this post! At 66, diagnosed in 1977, I am starting my second year on Ocrevus. No, it didn't make me 'young' again. No, it didn't 'cure' me. But it seems to help, and realistically that is important.

My Neuro, the director of an MS Center, strongly encouraged me to continue with it until "something better comes along". With the money at stake there will be new stuff coming down the pipe all the time. Until then I'll use what's available. It does help.

I'll take his advice!

I WOULD HAVE LOVED TRYING THIS, BUT BECAUSE I WAS ON ANOTHER INTRAVENOUS FOR A YEAR MY VEINS STARTED TO BLOW. NOW I CAN'T DO THEM ANY MORE. WHEN I GO FOR BLOOD WORK, THEY HAVE TO USE BUTTERFLY NEEDLES TO GET MY BLOOD. NOT YELLING I NEED THE CAPS FOR EYE ISSUES. NOW I HAVE TO TAKE PILLS. SO SAD, HOPE THIS DOESN'T HAPPEN TO ANY ONE ELSE. GOOD LUCK ALL.

I am a 64 year old female with PPMS with a relapsing form of MS. I have had MS for 35 years. When I was diagnosed in 1984, there were no disease modifying drugs. I worked as therapist for almost 25 years. I was in most of the clinical trials that introduced injections to slow MS leisions and to fight the B and T cells overproduction. I was in the clinical trials of using Rituxion (which was the precursor to orcrevus). I have had some very bad relapses , paralyzed from the neck down in 2007. Got better. I have residual right side weakness. I have found Orcrevus to be life changing?. Very few side effects. I am still walking and enjoying life to the fullest. I absolutely have MS, and live with the very same symptoms as others...fatigue, muscle weakness. I exercise my body and mind everyday. I also use medication to fight fatigue, attention, and mild depression. Everyone’s journey with MS is different. We MS warriors are survivors and thriviors.

I began Ocrevus therapy in October 2017 and am scheduled for my third infusion this coming October. I am a 56-year-old male diagnosed with relapsing remitting multiple sclerosis (RRMS ) in 2002 and secondary progressive MS (SPMS) in 2013. Before Ocrevus I have tried Copaxone, Avonex, a combination of both Copaxone and Avonex various alternative therapies, no therapies and Tecfidera, all with no detectable effect. After my diagnosis of SPMS I began Tecfidera, then switched to my current neurologist in 2016. He highly recommended I go on one of the newer biologics. when I asked him about Ocrevus he said he knew of no severe side effects nor any instances of PML. in my own research on Ocrevus I did find side effects indicating the possibility of infections and particularly upper respiratory tract infections. Although Ocrevus had just been FDA approved he said he knew of people who had been on it for four years and were getting some positive results. However, he couldn't tell me what the positive results were. anyway, I decided to try it. After about a year I can report no improvement, aside from lessened urinary urgency, and no side effects. my condition continues to worsen.

Thanks to all for sharing, it is a big help as I consider whether to continue the therapy.

Clearly it is working for a good number of over 55’s. I will take this to my consultant when I next visit! Thank you over 55’s.

I think if the Doctor gives you the green light then you should go on ocrevus. I went for my first infusion on December 6, 2018 and it actually really works. I always use to drag my left leg when walking and now I don’t. I actually feel normal again and got my energy back and brain fog has disappeared.

Thank you for your informative article Debi! I am also very undecided about trying Ocrevus. I have been on Copaxone since 2013 and have progressive MS. I have to use two Bioness units for foot drop now and use a walker, but I'm still going. I too have been really concerned about whether the risk of infections outweighs any benefits from Ocrevus. I am 61. I have been following 4 facebook groups carefully since October and it seems to have the most benefit for men overall, women 55 and younger and for those newly diagnosed. For those 60 and older who are woman, it really seems to be a roll of the dice! Some do dodge the infection and side effects but I've observed that very few women have reported positive results as compared to men. I have found this interesting and troubling in my consideration to try Ocrevus. My neurologist has no opinion one way or another. I have planned to stay the course with Copaxone and high dose Biotin this next year. My MRI's have been stable with no new lesions since 2013 although I have continue to progress. I wish you all the best as you consider you next step in fighting MS! Good luck to all of you MS warriors this new year! May 2019 be known as the year of the cure for MS!

Those considering Ocrevus for PPMS might be interested in my new blog post:

https://ppms.blog/six-reasons-not-to-take-ocrevus-for-ppms/

Hi. I am 57 & was diagnosed with MS 6 years ago. 2 days ago my neurologist told me that because of being diagnosed so late in life & the fact that my legs have been significantly weaker the past few months that he thinks I have PPMS. It hit me pretty hard. All this time I've been saying 'Oh well, at least I don't have the bad type.' Now new decisions must be made. My Neurologist immediately said I should start Ocrevus. He said it takes about a month to get started after signing up.
I have 2 main concerns:
1. I feel that I should wait to start Ocrevus because of the increased immune issues and Covid-19.
2. If I stay on Tecfidera will that help my PPMS not get worse.
...is Ocrevus good for both types of MS? He told me that if it happens to turn out that I don't have PPMS (just MS) that Ocrevus won't do any damage or set me back with regard to MS.
I will get a second opinion. But I trust my neurologist 100%. He's been in practice for 30 years and is an MS specialist.
Obviously I still have many questions. I just want to do whatever is best to assure (or at least assist) longevity and to watch all of my grandchildren grow up.

I suppose to start Ocrevus this year. Newly dx July this year. It was difficult to get the medication approved. I have concern about the adverse reactions. If I decide to go ahead with the treatment, I hope it will work, I have had difficulty getting equipment to help with ambulation. Everyone wants to send information thru email. I have to make a decision soon.