Two Women with Different Forms of Multiple Sclerosis Call Ocrevus a Lifesaver
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Pamela Arterbridge noticed something was wrong back in 2013 when she woke up one morning, and her legs and feet were tingling.
Two years later, Lorraine Lee knew she had a problem when her right leg became extremely fatigued after every workout.
Neither realized their eventual diagnosis would be multiple sclerosis (MS).
Arterbridge, a 46-year-old, self-employed hairstylist from Columbus, Ohio, and Lee, 55, a registered nurse in suburban Austin, Texas, have different forms of MS. But both say Ocrevus (ocrelizumab) — an intravenous infusion therapy the U.S. Food and Drug Administration approved last month — has dramatically improved their lives.
No more injections
“Prior to the numbness and tingling, I was just really tired and drained all the time. My family doctor did blood work, and said I had low vitamin D,” Arterbridge told MS News Today in a phone interview. “A year later, one day, I woke up and felt sensations going up and down my legs. I went back to my doctor and had an MRI. When the results came back, she sent me to see a neurologist. I was devastated [at the MS diagnosis]. I was concerned that my career would be over.”
Pamela Arterbridge at her hair salon in Columbus, Ohio.
Arterbridge learned she had a lesion on her spine and three on her brain. Eventually, she was referred to Dr. Michael Racke, a neurologist at Ohio State University’s Wexner Medical Center and a pioneer in B-cell therapies for MS.
Like 85 percent of patients diagnosed with MS, Arterbridge was told she had the relapsing-remitting form, known as RRMS.
Racke put Arterbridge on Copaxone, which she began injecting herself with three times a week. It caused high fever, burning rashes, and other painful site reactions that sent her to the ER more than once.
During an April 2016 follow-up visit to the clinic, Racke suggested Arterbridge try ocrelizumab, an experimental drug developed by Genentech and marketed now as Ocrevus.
“At first I wasn’t sure if I wanted to do a trial drug,” she said, “but after talking with my family and my husband, I decided to go with it because Dr. Racke was so passionate about it.”
Since then, Arterbridge has had three Ocrevus infusions, half a year apart — and feels much better.
“It’s a very simple process. I go to the infusion center and I’m hooked up to IV. I just relax, and most of the time I sleep straight through it or I read a book,” she said, adding that not having injections three times a week is a huge relief.
“The fact that I only go every six months, and that I’m not on any other drug, is almost like MS isn’t really a part of my life anymore. I don’t have to worry about missing a dose. I have several clients with MS, and if they miss a pill, they have to start all over.”
Nine servings of vegetables
About 1,200 miles to the southwest, in the Austin suburb of Cedar Park, Lee — a registered nurse and the mother of two grown children — said she had always been in excellent health. For years, she worked out six days a week and followed a healthy diet.
Lorraine Lee on vacation in Wembley, Texas.
“I wanted to be an example for other people,” she said. “But in October 2015, I noticed that after working out, my right leg was very tired. Then after resting it would be fine.”
When the other nurses told Lee something was wrong, she saw a doctor, who misdiagnosed her with ileotibial band syndrome (ITBS). Lee insisted she didn’t have ITBS because she wasn’t in pain.
When her symptoms worsened, she saw an orthopedic surgeon, who took X-rays and confirmed that her problem was neurological. Finally, she ended up seeing Dr. Edward J. Fox, a neurologist with the Multiple Sclerosis Clinic of Central Texas. An MRI and then a spinal tap confirmed that Lee had MS.
“Dr. Fox’s words to me were, ‘If you’re gonna have MS, this is the time to get it,’” she recalled. “He then explained about a new medication for PPMS [primary progressive MS], which is what I have. I was going downhill very quickly.”
In the space of three months — while waiting to get into a Ocrevus trial — Lee went from using a cane to needing a walker to get around. Spurred into action, she changed her diet, eating nine servings of vegetables daily.
Every morning, she blends spinach, bananas, strawberries and coconut milk into a shake, adding a touch of agave for sweetening. Her lunch consists of a large salad containing some combination of broccoli, carrots, peppers and tomatoes.
“If I had just waited for the medicine, that would not have been enough,” she said. “It’s intended not to heal, but to stop the progression. And in this case, I don’t think it’s just stopping it, I’m actually starting to improve.”
Lee finally received Ocrevus in March as a two-part infusion.
“It’s no big deal, but that’s because I’m a nurse and I’ve given infusions before. Now I’m on the other end of the needle,” said Lee, who now reviews medical records for the State of Texas. “They have an infusion room with a line of reclining chairs. They first give you a dose of prednisone, then an IV push like Benadryl to prevent reactions. Benadryl makes me sleepy. The infusion took four hours, and both times I was asleep for most of it.”
Lee’s only other health problem is osteoporosis. Although she was born in New Jersey, she spent a good part of her childhood and adolescence in Alaska. About 15 years ago, a blood test revealed she had a serious deficiency of vitamin D, the main source of which is sunshine. Sometimes she wonders if all those years spent in northern latitudes, where sunshine is often in short supply, might account for her MS.
The safety and money questions
Arterbridge and Lee are aware of the risk of cancer that is associated with Ocrevus.
“It does concern me, but I understand they’re always side effects with drugs,” Arterbridge said. “I’m doing very well, and pray that this is something that doesn’t happen to me or anyone else taking this drug.”
Lee said she’s not concerned, even though clinical trials indicated that cancer was a risk for PPMS patients like herself who take Ocrevus.
“When you’re regressing extremely quickly, you know that if you don’t get treatment, you will be wheelchair-bound,” she said. “I can now walk around in my house without a cane. Last year I could not. So to me, the benefits outweigh the risks.”
At $65,000 for two annual infusions, Ocrevus is expensive. Both Arterbridge and Lee will be receiving it for free as long as they’re part of clinical trials — but neither knows what’ll happen after the trials end.
“I’ll cross that bridge when I get to it,” Arterbridge said. “This is something me and my husband will talk about. Hopefully our insurance will cover it.”
“I don’t know what the insurance companies are going to say when they see the bill,” Lee said. “But I have a very supportive husband, and he said we’d do whatever we have to. At this point, I’m concentrating on too many other things right now to worry about that.”
Mary Jane Mazurek
Wonder when Health Canada ?? will approve Oc
Kim Cruikshank
May 1st appointment with my neurologist in Ottawa. She said it will be 6 - 9 months before Health Canada will reveal the results of their review.
Jerry Dhondt
I am wondering about how many people are on Ocrevus?
Maurice Carroll
I am I'm male from Indianapolis In
Kirby
I live about an hour south of Indianapolis and started treatment a few weeks ago after taking 3 other RRMS drugs and Ocrevus is almost scary because of the improvement. No more heat issues and my energy level is much better.
Marianne
How wonderful that you are doing better. How long have you had MS and how old are you now, thanks for sharing , Marianne
Nick
Hi Kirby,
Same here, I have MS for 26 years and the last three have been in a wheelchair. I am now standing again and fingers crossed - maybe walking gain in the future. But definitely no heat issues anymore and my left arm is nearly back to normal strength! I have also added a large dose of Biotin to my daily medication.
I have just had my second infusion and for the naysayers - My MS NEVER gets better and after 26 years I know it has to be Ocrevus, + maybe helped by Biotin, in Australia it is marketed as Ocrelizumab.
L. Anderson
Hello Kirby!
I am 44 years old and was diagnosed with RRMS in 2004. I too, live in southern Indiana. I have been on Copaxone for years. My neurologist is now suggesting Ocrevus. What have your side effects been and where do you receive the treatment?
Marilynn Leahy
Maurice, my husband is debating starting treatment. I was wondering if you could rate your progress so far with the drug.
Thank you
Norma blanco
I'm a female 70 years old, had M.S. for many years. Live in Miami Beach,and had my first dose of Ocrevus 6/26/17 and the next one 7/11/17. I noticed the change in my life just the following morning after first dose, when I woke up, get out of bed and could walk without the help of the walker????. Oh my God!!!my left leg is doing better. I used to drag my foot, caused I had foot-drop.Insomnia never ever,feel my body very light, Tinnitus very soft,This process has been a miracle for me. Let me know of your experiences.Thank you.
Julie Meyers
Any problems?
Lisa stark
my husband will start this treatment on 6/30/17. He has PPMS.
Jacklynn Baker
Good Luck!
I start treatment on 6/26/17 and have PPMS.
Excited and relieved that my insurance has approved the treatment.
Keep me posted on your progress.
Sandy
Has it helped him ? I am going to start soon. I was wondering if it helped him.
Jamie
I just started ocrevus. Had my first infusion yesterday. Had mild side effects, flu like symptoms and itchy ears but they went away quickly. I'm very excited about this drug and hope it makes my life easier ☺️
Cheryl Sickler
I am and I have had 2 infusions. My 3rd infusion will be in December, 2018.
It has worked wonders for me. I no longer need to use a wheelchair, walker or a cane. I was diagnosed in Dec 2002. I am even working 12 hrs a week now!
Sherry
I will be starting soon. After Tecfidera and gilenya failed.
I’m in Canada I started a group. Please feel free to join my cannibas friendly ms support group. Knowledge is power. Love n light ??
https://www.facebook.com/groups/934381923311379/?fref=ts
Nicole DeBiase
I am. Female, 41 y/o, Tampa, Fl.
Lindsay
I just want to know if she was able to continue to work as a nurse. I'm a nurse getting ready to start this med and am worried about it.
Tim Bossie
That is a good question Lindsay. We do not know for sure and do want to assume anything. However, if you can continue to work and perform your duties then there is not reason not to continue.
Lisa
I had my 1st infusion on May 16, lasted 8:30-2:30, 180 mg of Ocrevus. Now tomorrow, May 31 at 8:00 am, I will receive ny second infusion of 180 mg. I have MS 29 years this November, coincidentally when I receive my full 300 mg. Of Ocrevus. I have SPMS and extreme vision loss. After first infusion, I had chills and achiness. Very bad nausea after that. Notice difference in my walking....better
Has anyone else experienced nausea or gastro upset? Good luck to everyone
Bill
Just did 1st infusion yesterday (300Mg). I had reaction (infusion related rash) very quickly - within an hour of start of infusion. More Benadryl reversed that in minutes. Overall I was tired from the benadryl and a little wonkey (probably same reason). No nausea. Am hoping the next infusion two weeks will be as smooth. Also hoping for good results like so many others. I tried and failed several other DMDs for the standard reasons.
Suzanne Sparks
I will have my first infusion this morning. I am a nurse, but have been too disabled to work since November 2011. In addition to Copaxone injections, I've tried several alternate treatments with disappointing results (stem cell infusion, antiobiotic protocol, & acupuncture/Chinese herbs). Hoping & praying Ocrevus will help.
Gail
Have you any updates?
Velma burgess
Suzanne--I am very interested in your opinion, progress, as I am wheelchair crippled with MS.
Nay
I had my first infusion on June 5 and my second infusion on June 19. Prior to my first infusion, I had some difficulty walking. My MRI revealed new lesions/enhancing lesions on my brain & spine. I had to wait about 6 weeks to get Ocrevus. Too long of a wait for treatment if your condition is worsening (in my opinion). After the first infusion, my walking seemed to slowly improve. After the second infusion, I am experiencing muscle tightness/sensation in my left leg. It makes it somewhat difficult to walk without a cane. I do see a PT and Baclofen for the stiffness. I am hoping & praying for a miracle by taking the Ocrevus!
Stacey Baker
I had my first infusion on June 9 and my second on June 16. I really didn't have any side effects. No reaction site issues, and I felt fine afterwards. The was drowsy from the Benadryl but that was it. It was a good experience...hopefully others will have the same luck. I started out on Rebif which I didn't like at all. I hate injections and the side effects made me feel like I had the flu every week. I switched over to Tecfidera which wasn't bad after I got past the side effects with the stomach issues. I had to go off and re-start on a lower dose that I built up to full dose over about 2 months. When I did that, I had no issues. Of course then you have to remember to take the pill twice a day, everyday.
So far I much prefer the Ocrevus. I'd rather go in for an infusion twice a year especially since I didn't experience any side effects. I'm one of the lucky MS patients in that I have very few MS symptoms. That makes taking medication more difficult because I tend to feel worse when I take MS medications. My neurologist feels it is worth it for me to take it because it could be the thing that keeps me from developing symptoms. As long as I don't have to pay anything, I'll keep taking the medications...thank goodness for co-pay assistance.
Juan
Smart! Thinking your invincible as I did is not good, so good for you being aggressive before ms is.
Dale Cohen
Day 1: Monday June 26 2017 I went to the doctor 11am they started my IV I had taken 2 Tylenol previously once they started me on the Solu-Medrol they gave me Benadryl I immediately became giddy and sleepy. One half hour later they started the ocrevus whent they increased the medication I became congested a little as they increased it to 90 milliliters I developed a lump in my throat the nurse immediately stopped the medication she called for the doctor he came in and prescribed me another 125ml of the Solu-Medrol they gave me another saline flush put me back on the medication slowly I was fine I stayed for an hour after I had received the medication. my husband took me home he had a meeting and went to his meeting and I wasn’t feeling so perfect I took the Benadryl as the nurse recommended and I went outside to be with other people until my husband got home nothing happened I was just afraid to be alone. Better safe than sorry. All’s well. I’ll keep you posted . Next infusion today.
tiffany morales
Hi! I got my first infusion today, I was reading threw this page when your experience caught my eye! I too became congested and had a very itchy throat after the drip was increased the 2ND time nurse stopped immediately called the doc and doc prescribed more benadryl and it went away. the doc sort of said maybe I was sick already because congestion was just odd. seems like this might be something that really does happen and I'm not crazy ? interested room see if it happens next time.
Dan Jablons
Hi everybody! Thank you all for these helpful comments. My brother was diagnosed with MS, and his neurologist said that while he’s doing well, he does have “subtle progression” of the disease. He’s recommending Ocrevus for my brother, but I worry about these side effects and whether or not the drug is helping people. Seems from what I’ve read above that many are suffering from fatigue. Can any of you who have been taking Ocrevus tell me how you are doing with the drug?
Lisa K.
My name is Lisa, I'll be 38yrs old in a month and a half, I'm from Huntingburg, Indiana and I've been "SURVIVING" MS for many years now. Unfortunately, I all MS treatments that my doctors prescribed for my type of MS have ALL FAILED, and I'm currently having SO MANY ISSUES that I didn't even know were symptoms that I'd experience with having this illness. I'm new to sharing personal info, but I'm finally starting my FIRST TREATMENT TOMORROW of a new MS drug that was just FDA approved March 28... point made, I'M TERRIFIED and I really need some comforting words of encouragement from anyone out there in this GIANT WORLD that actually understands what I'm thinking, feeling, and DREADING...ANYONE OUT THERE??
Robin
Hi Lisa, by the time you read this you will have already had your injections. I hope they went well for you...please keep us posted on any improvements you have. My aunt has MS and has a lot of issues...we've been looking into the injections as well but like you she is terrified. Good Luck and God Speed.
Margaret
Hi Lisa, My name is Margaret and I also live in Huntingburg. I have had MS for years and have been on Rebif, Betaseron and Avonex. On Sept 19th I started Ocrevus. It went just fine. I didn't get side effects and I am felling better. Hope you did as well with your infusions.
Christina
I'm terrified as well, Insurance Company just aproved me 100% for the beginning of Ocrevus infusions, I have an appt. With my MS Specialist1/3/17 to find out when I will begin,But I am as always placing my faith in God and holding onto prayer as well as maintaining a positive attitude,My main concern is the side effect of cancer,
I am a four time Cancer Survivor, Bone Cancer at present along with the MS, Lupus, Fibromyalgia,Diabetes, High blood pressure, COPD,Rheumatoid Arthritis,Gout, Gastroparesis,Insomnia, Depression, I've suffered a stroke, You name it and I have it, But by the grace of God I have endured and you can as well,Think about living life anew versus the life your experiencing with MS, I've gone from a cane to a walker and the Drs.feel I'm at a point that I need a hoveround because of consistent falls and my gait, Never free from pain,numbness or tingling,I will keep you in my prayers,I find the most important thing when going through these trials is to relax and go to your happy place, If you don't have one create one for yourself let go and let God, Luv U!!!
Angela Harrell
Hey Lisa, I just started Ocrevus (1st 1/2 dose was Jun 29th). Main side effects: itching, nausea, throat irritation and extreme fatigue. Hoping to do better with 2nd 1/2 dose. Diagnosed Jun 2005 with RRMS, immediately in a wheelchair and stayed in it for 3 years. Copaxone for 10 years (I kept having relapses on the 3x/week shots; better w/daily shots but had bad skin reactions. Put on Avonex in 2015 but the flu symptoms never waned so I decided to try Ocrevus because I started having mini-relapses and most recently, a major one that put me in the hospital for 11 days followed by 6 weeks of st-home physical and occupational therapy. Trying to decide if I need to go out on disability retirement. Functional capacity test says "yes" but my stubborn mind says "try Ocrevus." We'll see I guess. Are u still on Ocrevus? If So, how r u doing now? If not, why did u stop?
jose carmona
I have the progressive & relapsing MS, my lesion in the spinal cord is exactly on the cervical. What you reckon ? could I take this drug ? I have MS for 17 years & quadriplegic condition.
SH
My MS brothers & sisters,If your like me and don't know how you got this, keep your head up,pray,trust God to restore our QOL. Trust Him . I've been a health nut all my alife never
dranked or smoked but We must fight.for each other and for the future.?☺?
SH
Hi Lisa You are not alone in this?.I had my first iv of Ocrevus today.I feel great☝Be encouraged. Hey,I broke my leg in 2 places yesterday but I'm a overcomer.You are yoo.You got to advocate for yourself,exercise ???.Pray??.Keep your mind free and your atmosphere stress free.Eat healthy
Fruits?????? Vegetables??.
Heidi
I had my first dose yesterday. I feel wobbly and tired. I'm secondary progressive. I'm scared. did anyone went through that. Is it going to get better?
Christine
I have secondary progressive also. I had my first infusion of Ocravus two days ago. I am very achy and tired. Did you start feeling better? I sure hope this turns around and I get feeling better soon!
Frances
You will begin to start feeling better. You probably have by now! In August, I had my first two rounds. I have experienced dizziness and nausea, which I figure is better than the path I was heading down! I pray every one quickly reaches their destination of healing!!
Andrea Stokelin
Hi,I started 8/28/17 and I'm experiencing nausea and diarrhea. I go back for my other dose September 28.
Sandy
My husband taking first does 9/8 second does 9/22 we are both really scared. Thanks everyone for all get information I wish all of you the very best.
Tammy
I just had my second dose of Ocrevus yesterday. I have RRMS. I was diagnosed in 1991. The night before my infusions my neurologist has me take a Zantac and a dose of Benadryl. The morning of the infusion they will give you 2 Tylenol, a syringe of prednisone and a syringe of Benadryl which is injected right into your iv. You feel the effects of the Benadryl with a minute of them injecting it. This makes you feel pretty tipsy lol. It also allows you to sleep thru most of your infusion. I find that the effects of the Benadryl is what causes the "wooziness" for the rest of the day/evening. All in all it wasn't a bad experience at all.
Ms.Gilbert
Hello I have PPMS have tried at least 5 different DM. How long did it take for you
to begin taking the first infusion once everything was approved?
Daniel
Hello, I am SPMS, only outward relapses were the two used to diagnose in '99, I took Avonex for 10 years, 1 year of Copaxone and then the last 7 have been Gilenya. Gilenya is by far the best in terms of side effects, I have none. The risk of infection with Gilenya is still there and my neuro thinks its too risky and Ocrevus provides less risk and potentially greater reward (proven results with progressive disease whereas no other DMD's have this). with SPMS I have been on a slow physical fall for quite a few years (walking only with walker and KFO), primary means of transport is a 3 wheel scooter for the last few years. I have a great support network and am truly blessed in a multitude of ways. I am looking forward to the change...cautiously optimistic for sure. The thought of slowing / stopping progression (or maybe reversing) is exciting to say the least.
Ron
Hey there all my MS brothers & sisters. I was first diagnosed with MS 2003 and have the rare form - relapsing progressive. Also have Fibromyalgia & Occipital Neuralgia (horrible headaches).
I've been on Copaxone for quite a few years.
I've had no new lesions since being diagnosed, but this past year, my symptoms have gotten a lot worse. A lot more pain issues.
My Neurologist has recommended Ocrevus and I know it is a disease modification drug which slows the progression of the disease. However, from testimonials that I've read here and elsewhere, it also helps improve quality of life (reduces symptoms).
If this is not the case, then personally, I'm not sure I see the point of switching - any thoughts??
I've been approved by my insurance company, but awaiting approval from a foundation to help defray the cost.
janice newton
Hi my name is jan. I took by two doses of ocrevous in Septemberof 2017. It took a long time,but I had no problems. Don't let the fear of cancer stop you. There are a lot of things that can cause cancer , but this medication can improve your life style I think that makes it worth while and you can pray cancer is not something you will get. I believe I'll be walking soon without my walker. My balance seems to be better. I will let you know if I notice any other changes.
Jenn
Hi my name is jenn. I was diagnosed w MS in 1995. I have been on a few DMD's (Copaxone, Rebif very short time---could not handle that drug) Now I am on Aubagio ----Dr has suggested I try Ocrevus. To be very honest I'm a strong MS patient I know my reality w this disease (no cure SUCKS). I guess at this point I am looking for a better quality of life. I am so tired of balance issues and fatigue. But cancer really scares me. I'm so very confused. Please feel free to give me your input.
Thanks
KELLY
Hi I'm Kelly from Los Angeles, originally from the northeast. I was diagnosed 25 years ago when there were no approved meds! Eventually I took Avonex, Copaxone and Rebif, then 3 yrs of Tysabri. Ive managed to work full time through all of this, but now that I have SPMS life is pretty difficult. I had the first 2 Ocrevus infusions in Sept, and I feel awful. I'm exhausted and my right leg is useless, I cant do anything without my cane and my balance is pathetic. I look drunk all the time :( Has anyone else switched from Tysabri to Ocrevus? My neurologist says I need to give it a few more months before I potentially experience improvement, but of course he says there are no guarantees. Any suggestions??
Susan
Hi, my name is Susan from Connecticut. Kelly, your story sounds similar to mine. I am switching from Tysabri to Ocrevus, and would appreciate more feedback from others who have switched. I haven't gone for my infusion yet, but I'd like to know what to expect, so I can prepare, as others depend on me and I have no one to depend on for help or to help my dependents.
Your neurologist sounds like mine too, no guarantees with
my dead leg.
I thank you for sharing your outcome, I hope by this time, you are doing better.
Kelly
Hello all,
I'm awaiting approval from insurance to be allowed to start Ocrevus-- isn't it a shame that any of us have to rely on approval from insurance for anything related to the our health. I guess we've just become accustomed to the process. Anyway, I'm looking forward to starting Ocrevus. After my diagnosis 13 years ago, I've tried Rebif (extremely increased my liver enzymes), Copaxone (bad site reactions), Cellcept (ineffective for me), LDN (low-dose Naltrexone; also became ineffective for me). The comments I've read in this thread have been helpful. I have such high hopes in Ocrevus helping to relieve my foot drop, spascity, fatigue, and tinnitus.
I also look forward to reading about people's experiences with this drug and hope it continues to be successful.
Good luck and peace to everyone-
Phyllis
Were any of you jcv positive before starting Ocrevus? I am having to get off Tysabri because I am positive and dr. is recommending that I go on Ocrevus. I've read that it can cause problems going from Tysabri to Ocrevus if you're jc positve. I know I don't have many options left and have to take something. I experience a lot of excruciating pain and severe headaches. Now, I'm experience a lot of anxiety, memory loss, cog fog, and depression. Hope Ocrevus is the miracle drug.
Marcia Jedrzynski
I tested positive for the virus I just had my first infusion of Ocrevus October 20 and my next one will be November 3 happy to report no problems .
Donna
I tested positive for JCV and had my first infusions in Sept 2017 with no reactions. Just really tired after but that could have been the benydryl. I feel better not as much pain but still weak especially if I over do. I was diagnosed in 2013 they started me with Avonex 1 year it made me sick everytime I took it, than they put me on Tecfidera for over 3 yrs but it started to elevate my liver enzymes and they immediately took me off of it and they started me on Aubagio which gave me terrible diarrhea. So, I requested the Ocrevus and my insurance approved it so far it has been the best one so far.
Just hope it keeps working. Hope this helps answer someone’s questions
Donna (PA)
Bonnie wertman
Hi all. I had my infusions end of Aug then 2nd one early September 2017. As most of you said I too was very anxious about taking ocrevus. Everything went well and no side effects. It has now been a month and can def tell a difference w my fatigue issues and the spasticity in my legs. However, I can feel my legs starting to feel tight again. Will definitely stay on ocrevus until my next visit in February 2018 as I do feel better than any other drugs I've taken since I was diagnosed in 1996. Thanks everyone for the updates
Bonnie Wertman
[email protected]
AS
Hi all, I am 58 y/o diagnosed with PPMS 2 years ago. I feel pretty much the same since my diagnosis. Left leg weakness (losing muscle mass) some balance and fatigue issues and definitely hate the heat! I have not had a spinal tap. MRIs show brain lesions but none on spine. Optic nerve perfect. I still walk ok but really need a cart when I go grocery shopping. I do notice that when I overheat I can get agitated easily. Can’t avoid the heat since I live in So. Fla and I have 2 puppies that I have to take out frequently.
My doctor recommended Ocrevus. I am wondering if I should wait until the point when I see myself progressing rapidly or should I do it now. My doc who is the head of the MS center says he feels very confident I have MS. I keep wondering maybe, just maybe I don’t have it and with exercise I might be able to rectify or hold back the disease. Has anyone else crossed this bridge?
Frances Pachner
Hi, yes I kind of have crossed that bridge. The wondering and hoping concerning ms. I did try to change the path of ms. I only did what was laid heavy on my heart every step I took. I did strict diet, Bee Venom Therapy, LDN, and supplements. I was dx in ‘04 and did not do ms meds until May ‘17. It was then that I knew I was not getting the improvement I wanted, felt the weight on my heart to change course. I started Ocrevus in Aug ‘17. I am seeing the positive changes and new hope. Personally, I am glad I am trying it. I do not know the perfect answer to your question should you start the med now or wait until you decline. Listen to your heart. Try avoid symptoms if you can!
Juan
Don’t wait to get bad to start that’s what I have done and I regret it. Whether its this or something else, Be aggressive before the disease is.
Anne McGinn
I was dx at 57 (2012) with PPMS how are you doing with Ocrevus? Sounds like our situations are very similar (which is very unusual) can you reply to me directly?
Jimmy
Hello, my name is Jimmy and I had MS since 2003 but didn’t get diagnosed until 2012 funny without the ha ha. I will get my first infusion of ocrevus in three days. Not worried about side effects just would love to know about results. I’m 40 with three kids the youngest is my son. I used to run the 100m in 11 seconds flat when I was 15 and played hockey at an elite level other things caused those dreams not to come true but that is another story. I don’t expect to be able to do that again but I would love to be able to show my son how too. If you could let me know how or if this changed any of that for you I would love to hear it,and if it didn’t I would love to hear that as well. I live in kitchener Ontario, Canada no relovince but I thought I would let you know anyways. Thanks for any information that you can send me
Jeff
My wife was diagnosed with RRMS in July. She began Copaxone treatments and has had a rough time with the injections. Two neurologists we have seen recommended Ocrevus. We initially applied for it and our insurance company rejected coverage. They said they wanted to see her try at least two different drugs first. Our doctor appealed this directly with the insurance company, and after a conversation between the doctor and insurance company they finally approved her to receive Ocrevus. My point is, if you are initially declined coverage, have your doctor appeal to your insurance company. Don't take no as an answer. She will receive her first infusion at the beginning of Jan '18. Wanted to start sooner, but the infusion center was booked.
Lola
Hi, I'm a 46 yr old female diagnosed with RRMS 19 years ago. I just had my first dose of Ocrevus a week ago. I was given premedication, benadryl and Tylenol, along with the prescribed iv solumedrol. Vitals were taken every 30 minutes and I had normal to low blood pressure and only a slight fever. The only other side effect I had during the infusion was a slightly itchy throat for a few minutes. Afterwards, I was just really tired from all the benadryl. Night of infusion I woke up with itchy feet. Other than that, I’ve had increased energy and I feel great. My mind doesn’t feel as foggy, probably due to the boost in energy. Im actually looking forward to my next infusion in a week. Neuro wants blood tests every 3 mos to check on liver, then MRIs at 6 and 12 months.
KJo
I was on IVIG until my new ins. decided today that it's not a 'medically necessary' therapy after telling me yesterday it was an 'experimental' therapy. It is neither, even the NIH says it is a credible therapy. I guess the last 18.5 years of my life have been a waste. (I was diagnosed officially at 19 in 1988, but my Mom and I think I've had it since age 12, 1979.)
I have been on IVIG this entire century and with great success. I don't know what I will do now that my ins. co. is strong arming me into a therapy I do not want to take. (I don't want PML, cancer
or even just an increased risk of either.)
I still walk, talk, think, swallow and feel fine except on hot days.
The majority of my vision is gone and has been since '88, but that didn't prevent my attending 3 universities, visiting 9 countries or having 1 child. I stopped driving in '06.
I've lived with this more than I have lived without it and completely understand my prognosis and when it's the right time to risk dying
just so I can live a little. I don't mind needles but I certainly don't like insurance companies telling me what I can and cannot take. That's the doctor's job. Now is not the time for me to risk dying. Except for my left eyesight being gone, I'm fine.
Now can anyone tell me why I pay health insurance premiums??
Stephanie
I have PPMS... was diagnosed June 2017... Had my first Ocrevus treatment October 2017. My next treatment is March 11, 2018. I had no change on the first treatment. Can I expect changes on the second treatment?
Tom O'Donnell
Hi Janice,
I am in Sydney Australia and have been approved for Ocrevous, Diagnosed with MS 7 years ago, I am walking, have Headache and right side depletion of use, now have a Limp.
Ocrevous is on the Australian benefit scheme so basically free of cost here. I have ongoing Skin Cancer issues and I am in Hospital for 10 days having them removed and Skin Grafts. My question is how has the Treatment gone thus far?
I am very optimistic, I am male 59 years Old .
rick reimer
I was diagnosed with PPMS in 1998. My most debilitating symptom is "foot drop" which started me using a walker in 2016 and now threatens to put me in a wheelchair. I'm considering starting ocrevus and wonder if others have noticed an improvement (or only retardation of decline) in limb use
Herta Fischer
I am 75 now. I was diagnosed with MS in July 2017 after experiencing all of a sudden a terrible Neuropathy attack from both feet all the way up to my waist and then could not feel my legs at all. MRIs showed MS lesions on my brain and I have been wheelchair bound since and can only walk wably for a short time with a walker. I have had 2 full Ocrevus infusions so far with the next one due Feb. 2019. I had no infusion side effects, but did lose my appetite and lost 20 pounds. I have had no improvements since having had the infusions. I still cannot drive since I still have this horrible neuropathy from both feet all the way up to my waist. On top of this I, out of the blue, I developed “Shingles” 10 days ago and with Antivirus medication right from the beginning, am doing what can be done to be rid of that the fastest way. I have no idea, if the Ocrevus caused me to come down with shingles. At least, the heat (I live in Florida), does not bother me at all.
David
I have had two half doses and one full dose of the Ocrevus. I had no side affects during the infusion. After I had a upper respiratory infection. With antibiotics it was healed. I’ve been in a wheelchair for 5 years now and I’m hoping this medication gets me out.
BDUBS
I finished my 2nd "half" of my first dose 3 weeks ago. I have previously tried nearly all approved drugs, both on and "off" Label(Rituxan, FTY -720 and a couple of others. With the exception of my "first" course of Tysabri, before FDA removed from the market (when I tried it upon its return and didn't have same result), I have never felt improvement from any drugs before Ocrevus. I was diagnosed in 1990 and have been in a wheelchair for 7 years. Since Ocrevus, I can stand better, use my weak arm more and take a couple of small steps. No side effects except itch in throat once. I'm a fan!