I been asking God for wisdom about starting Ocrevus. I even ask many in my church to pray for me for wisdom.
I have love and appreciate the well wishers for their encouraging words about taking Ocrevus As with all medications, there are risks. So I greatly appreciate non-judgmental, honest, loving, non-misleading, sharing about your experience with Ocrevus. I will share the source of other forums or groups that have already explored this topic. If there is a previous post on MSSA forum, please point me in that direction.
Thank you
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TonyiaR7
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Hi Tonya! There's a lot of great responses from it and of course, there are some who say it's not for them. I switched from Tecfidera to Ocrevus after 4 years because I was getting new lesions. I had just finished being apart of a focus group with O so I got to learn about it before switching. It helped me process things, but I was still very hesitant- it felt like the medical field was so aggressive with prescribing it.
I'm doing ok with it and love not having to take pills or shots everyday. I have my first full dosage in March. I have noticed from my support group and online forums, many people like it, but just like any MS symptoms it's so different for each person.
Continue to seek wisdom from God and do your own research... You will make the right decision for you!
Hi TonyiaRobinson7, I started Ocrevus last year in May 2017 and have had it twice and my 3rd is scheduled for June of this year. Not any problems, other than I notice hair loss to a point (but I have 3x the hair of a regular person) but other than that I have only seen improvement. It's slow acting, improvements for me, took 4 months after the 1st double dose, and the same after the second dose - but it is helping!
That’s fine. I think I have other things going on that it concerns me to add another thing in the pot. Like first finish getting weaned off my opioids. Going ok. Slow taper.
My research on ocrevus showed it to be one of the most effective DMTs with the least side effects. This has been the first year in many that I haven't had any new lesions or relapses. May God guide you to peace with your decision.
I'll pray for you for direction and wisdom, as well as peace with your decision. I've been thinking and praying about the same thing for the past year. My neuro hasn't brought it up much and feels that I'm doing all right on Copaxone with no new lesions on MRI and no relapses. My main worry is about lowered resistance to infection. Another worry is what my copay would be. I have to be practical about the $ part, too. It isn't unlikely that our insurance will change every year.
Let us know what you decide and what factors you took into consideration, won't you?
My neurologist doesn’t think that Copaxone hasn’t been doing much for me. I have to manage this pain better. The doctors believe I will feel considerably better off them. They are not doing much. Might actually making things worse.
I was on copaxone for 16 years, then tecfidera. I have a high deductible plan and I called Ocrevus and got onto their copay assistane plan. They are extremely helpful and they will assign you a person to walk thru the process with you. I had the first infusion 4 days ago. I'm a doctor and I was worried about the side effects since I see sick pabients… but I so wish I had done this sooner. I feel great. The day after the infusion I felt fabulous. I haven't had this much energy in YEARS.
It is the best dmd on the market. You will not be disappointed. Also go to the top of this page and click on the search link. Type in Ocrevus and it will list all the posts that relate to it.
I’ve shared monthly updates about my experience, which has been very positive. I’ve only had the initial doses so far. I didn’t have many options and Ocrevus was the obvious choice for me.
I have had the initial two half does and three full doses. Last year my MRI showed no new lesions on the brain. First time in the five years I have been having MRI's. I am having a brain and spinal MRI next month before seeing neurologist in April and next round of Ocrevus in May. I have PPMS so I really don't have choices for DMT's. However, I have had no adverse reactions Ocrevus. Only sleepiness from Benadryl. I even have a chair buddy, we schedule our infusions the same day and time. We met at the infusion center and have been together the last three infusions. The nurses have become our friends and we talk a lot during infusions to help pass the time.
For me, the number or new lesions has never correlated with inabilities. So it will be somewhat subjective. I look at what I do and can’t but it is hard to do that because I was younger and had different stresses in my life. So this is why my decision is hard. My bad days are really bad compared to good days. Medication has changed over the years and sometimes less medication has made me better. I will not be hasty.
Greetings and thank you to those who responded to this post.
My neurologist had convinced me to get all the MRIs and blood tests (& the flu vaccination; my 2nd in my lifetime). We were suppose to discuss when will I start. However, I was having second thoughts, even anxiety about starting Ocrevus.
After much research, praying and meditating (soul searching), asking other people’s opinion who know my personalityy, my neurologist and I both agreed Ocrevus was not the best medication for me. I was surprised (almost humored) when my neurologist changed her mind after receiving my email against taking Ocrevus.
1. I called the company and clearly asked what was the difference between Rituxan and Ocrevus. My understanding the main difference was the CD20 marker on the B-cells. and side effects. Otherwise they were basically the same. And the person I talked to concurred. In Rituxan the CD20 was made from a mouse but in Ocrevus it was humanized (mostly, maybe a little mouse).
2. I thought about what happen to all the Lupus patients who had taken Rituxan, and that Rituxan was really off-label for MS.
3. The advertisement about that Ocrevus was for RRMS and PPMS patients. I asked why wasn’t the drug for SPMS patients. Actually, anyone with relapsing MS was in the study. Thus, there were patients with SPMS as long as they had relapses. So they didn’t include SPMS patients who didn’t have relapses or PPMS that had relapses. I am approaching or have SPMS.t
3. I do not make the profile of the patients in the study, since I couldn’t take Rebif. I had tried both Betaseron and Avonex. With Betaseron I had to stop because my white blood cells became too low and I had flu-like symptoms for ever. My white blood count plummeted with Avonex and I developed hyper-active thyroid. With Gilenya my white blood count plummeted. So I was wondering how I was going to fight infections and most likely my white blood count would plummet with Ocrevus.
This is why I was put on Copaxone, and will stay on it. It isn’t the best DMT but that is what is available for me without compromising my hematological situation; alpha-thalassemia trait (always anemic or high iron), platelet aggregation disorder. Even though, Ocrevus folks say they may not get worse or be compromised.
4. Personality (emotionally) I am concerned whether this med will ruin my chances for something better. I will start having anxiety attacks if I start getting strange symptoms. It isn’t like one can say I will just stop taking the medication, it stays in you for 6 months.
5. I already have other health issues that may get worse with Ocrevus, like had herpes in one eye and skin conditions. I also tend to get upper respiratory infection, like sinusitis with an infection.
6. I tend not to do well with new medications. I seem to be more sensitive and many times the recommend dosage always has to be modified for me; need to start on lowest dosage.
7. I suffer from dry mouth and eye which will make me even more susceptible to infections.
8. Tumors. Some patients at the Cleveland Clinic we’re getting basal skin cancer. I have too many skin issues. Breast cancer risk. I already had two benign lumpectomies and benign calcification extracted from breast. And last ultrasound of breast had a small incident, but no cancers. I am afraid I may be placing myself in more risk.
9. I need some better symptom management with spasms and stiffness which all are fatiguing and painful. They are checking to see if I have Stiff Man Syndrome (SMS). I had issues with debilitating spasms since childhood, especially the neck. Sometimes I couldn’t even lift my head. Then it would go away and I will get another bout. Botox has helped but one has to make sure you don’t develop antibodies against Botox and remember to take a break to strengthen weaken muscles. I had to do that twice. For paraspinal spasms in my back and my legs.
There needs to be more data about this medication for me. How long can one can keep depleting their B-cell? How long do you have to take this medication or you limited to a number of infusions?
So I have too many issues or concerns to be able to comfortably start this medication. The risk is high for a great reward for me. That’s my analysis and opinion.
BUT, I am glad and thrilled that others are doing well with Ocrevus and even feeling better. And I hope and pray that no one has anymore or at least, slowed down progression & disability from this disease. I continue to pray God will get me and others through this disease. One day no more suffering, tears ...
Those are some good questions like how long can you keep depleting your B cell count. I’ve just started my first two infusions of Ocrevus and I’m so afraid of this drug, I talked to my pcp and she called my neurologist to tell her that I want to go back to Avonex I was on it previously but just stopped taking it because of the flu like symptom but I’m afraid of getting cancer now from OCREVUS and my hair is falling out. I don’t know what to do.
You need not panic or get overly alarmed. It will not improve your situation or relieve your concerns. You now have Ocrevus in your system. So you will have to live, with it for now. You need to contact your PCP and neurologist. There could be many reasons why your hair is falling out; stress, worry, hormone or thyroid levels just to name a few. You can take some biotin to help with some hair growth. And they also your physicians can assess whether you have any concerns for cancer. I have a faith in God, that he will get you through this 6 month period. But I still am terrible with causing my own anxiety attacks. Or at least get a psychologist so you can talk to someone. You can ask MSAA, NMSS or PCP for a name. I talk to God, my pastor and/or my psychologist and definitely my husband. But even a good friend and all the compassionate, including people here who are taking Ocrevus. There is more information coming each day about Ocrevus, and Rituxan. But I will pray for you and that you get the help and support that you need.
I just saw a post where some women were discussing some hair loss and the hair growing back frizzy. It was Lyssi458 post. I don’t know how you can get on but they say Ocrevus shouldn’t cause hair loss; but it is a chemo-like medication. I wouldn’t be surprised that is one side effect but should check with your doctor. I wish I could go back on Avonex because I felt my best until my white count went down the toilet. But I use to take medication that was for the flu on the first day to deal with the flu-like symptoms. I couldn’t tolerate betaseron flu like symptoms. I was sick every other day. But now stuck on Copaxone until I make another move. Gilenya did not agree with my tendency for low blood pressure. My body is too delicate. My mom always said I was delicate since I was 5 years old.❤️
I want to let you know I’ve been on ocrevus since the fall of 2017. The issues I have been was my first does and that was my legs were wobbly and I was having a hard time standing on them. That was the first night. I was afraid that my husband was going to have to stay home from work. But when I got up the next morning I could walk. Now I should let you know that I walked with a ROLLATOR. I never lost my hair. I want to let you know reading things that are on the computer, social media is not a good thing you don’t know who writing those things. The answers that you get on here are a good thing to go by, but just remember everyone we are all different. If you have questions you might want to ask your neurologist.
I am going to my next ocrevus infusion on May 10,2019. Now I can’t really say if it’s working I do have good days and not so good days.
But I also want to say I live in New England (Massachusetts) we have had soooo much rain and it has been damp and cold. When that happens my body just doesn’t like it 😟😕
No I’m definetly losing my hair and the hair that comes back is a bent and weird looking frizziest. I see my neurologist in July and I talked with her at the Cleveland Clinic and she said I could go back to Avonex if I so choose but the ocrevus is in me until October so I don’t know how long I’ll have to wait til I can start it again. I’ll take flu like symptoms over cancer and my hair falling out. I used to take 800 mg of ibuprofen after or before injections I just hope at my age 62 it worked like it had.
It has been a good spring here in NJ/PA side; overcast, dreary, damp, then one day it shoots up into 70 or 80s, and I cannot deal with a 20-30 degree change. Today rainy, high of 50, damp and cool. I did go out gardening and when I came in, my knees felt terrible. I guess I was distracted while out in my yard.
Hi Tonyia I live in Massachusetts and our weather is just ducky it has been raining out of a week 6 days and it does feel good when the sun is out if we are lucky for a couple of hours. You see I have to walk with a ROLLATOR last week The front wheel of my ROLLATOR east loose and I was loosing the ballbearings I do have a wheelchair what’s pain but I am lucky when my husband came home after work we went to get one
Life with MS really stinks hopefully the sun will return home to Massachusetts I hope you start to feel better when the sun comes back out
I received my information from the company directly when I asked them questions. I was not reading things on my computer or social media.
And the company pointed me to different sources to get information. Some folks gave me some information from this group. But didn’t give me the answers I was looking for based on my health history and my personality that I would worry during between infusions whether symptoms was from the Ocrevus. The symptoms is on the their site and description of the medication.
But I have not heard of hair loss or wobbly legs to be a symptom. My neurologist even said to me that hair loss was not a symptom. I was concerned about my hair because menopause hasn’t been so kind with thinning hair or hair loss.
And my neurologist agreed with my analysis and we decided it wasn’t for me.
I am sorry your legs feel wobbly. I heard other people saying they felt wobbly or their legs felt heavy on this site. I hope this improves for you.
The cold, damp weather doesn’t help.
I use a rollator, trekking poles, cane, wheel chair or nothing at all, like a chameleon. For the last 30 years. For me it just depends if I want to conserve energy, side effects of medications, MS flares up, spasticity or nerve pain in my legs/feee and recently my osteoarthritis has bothered me more.
I do hope great success for you with Ocrevus and that you don’t get any of the side effects that the company has published. And that this damp, cool weather improves. Especially for Mother’s Day!
Avonex worked the best for me even though my white cell count dropped my neurologist didn’t seemed very concerned I was on it for over 15+ years and didn’t have to worry about cancer and my hair falling out. I stopped taking it because it made me feel so much better I thought maybe I could not take it for awhile boy I was wrong big exasperation so went and saw my neurologist at the Cleveland Clinic and she told me all about ocrevus and it sounded good til I started reading about side effects. I see my neurologist in July I’m 62 so time is of the essence.
I would go back to Avonex and come off this Copaxone. when I did try Avonex again she didn’t take me off Copaxone. I have a low white blood count ( my normal). I plenty of platelets but they don’t work well for clotting. I had a hysterectomy because I was bleeding so much and that is when found out I wasn’t clotting. So on HRT. And I had two benign lumpectomies and benign calcification of the breast (that was the worse biopsy in my life). So between my hematology issues, and I have another auto immune disease of the skin lichen simplex, and these breast issues, I was to afraid that I was opening Pandora’s box if I tried Ocrevus. And I have osteoarthritis in my right knee and I may have to seriously think about getting a knee replacement. So how can I have a serious operation and be on Ocrevus. Plus I really will be doing some serious PT after that. I had to stop Botox injections for spasms in my legs. A psyiatrist thought that my muscle spasms were the cause of my bent knee. They helped some so I think my knee problem is a combination of MS and osteoarthritis. I stopped my last Botox injections in August and went to PT to strengthen my muscles in my legs and other parts of my body. I feel much better than in Dec 2018. I gained back my normal weight. I have more stamina. And my legs don’t buckle from anymore. So I thought I was progressing but maybe some but not as much as I thought with taking Botox injections. And I had less spasms when I want to yoga. Well I will pray that you will not have any more side effects from the Ocrevus and get back Avonex. I doubt you will have to wait much, especially if your B-cells are back to “normal”. They told me I didn’t have to wait until I first stop Copaxone for a specific time before starting Ocrevus. So I may I think after my initial 6 months after taking Ocrevus, I would be able to resume immediately unless my B-cells were an issue. But I have good confident you will be find accept for the hair loss. Don’t worry. Please. It will just make your time on Ocrevus unnerving. So if the doctor didn’t have any concerns about cancer before you started Ocrevus, I would not think about it. I had to many breast issues that I didn’t to risk it. And getting infections was high on my list because hematological picture. So those were the strongest reasons why I didn’t try Ocrevus. I also had a sister who died from cancer unexpectedly. I will be 59 years old. God willing, I will be older than my sister (she was 6 years older than me) when she had cancer. I panic to reach my 58 years old. She died at 58 years old. So mentally it wasn’t good for me to try Ocrevus. The risks seem to high for me. Try not to worry, easier said than to do.
thank you for getting back to me, idk what I’m going to do cancer runs on my fathers side my dad past away at 66 from bladder cancer and my aunt on his side died of cervical cancer, my neurologist didn’t ask me about cancer in my family and I have HPV, it’s very unsettling for me. I see my neurologist in July and I’ll see then what I will do. I have neuropathy in my legs and my job is in retail and I stand for 8 hours when I get home my legs hurt so bad. I’ll be 63 in November and I feel like it’s all down hill from here. again thank you for getting back to me. I try not to worry but I have big anxiety issues that I take meds for but sometimes I can’t stop my brain from racing thoughts. take care I’ll say a prayer for us both.
God bless you. I had to stop working. Neuropathy in legs is not fun. They gave me gabenpatin for neuropathy. I wish I didn’t start the opiate route for pain. Slowly working to come off. I am on less. I have much spinal pain. I can’t sit or stand very long. They suggested Lyrica for nerve pain but my eyesight became too blurry. All these medications have side effects. Soon the medication will be out of your system. Eat well, don’t stress, get plenty of sleep. Stress will make you have many health symptoms. Definitely come up ways to remove some of the stress. Meditation, prayer, listening to music or a good book, yoga, a cup of warm milk before bed... find something you really can enjoy and relax. Find some inner peace. Prayers for you. Like the bumps went away and so did the UTI. Think of good memories and future memories. I commend you for working in retail. What type? Strike up pleasant small conversation with folks. God bless. Put your trust in Him.
I work for Macy’s going on 19 years in February I have 4 more years before I can get Medicare and retire. I honestly don’t know how or if I’m going to make it. I’ve had m.s. the whole time but it’s getting worse. I work 35 hrs a week.
ToniyaRobinson7 You are wise to do such a thorough investigation before starting a new DMT. I admire your knowledge, your patience, and your analysis. I continue to learn so much from all those here on the forum. Thank you.
I have been on Ocrevus for a year and am about to get my next infusion. I have had nothing but positive results from it. It has slowed down my aggressive relapsing remitting MS and I feel the best I have ever felt while having MS. I know there are risks and I'm willing to take them to be on a medication that helps me to feel about as "normal" as possible, while slowing down my progrssion.
I wish you luck in finding the right drug for you.
i am truly loving doing the Ocrevus ....i have tried others and nothing compares to this...so much better ...have been able to do more since being on it..have been on since 2017 ...your knee things sounds like what i am doing now ...have had the shot with not much help for the pain taking aleve and another pill just helps and i use Biofreeze that i roll on the areas that has the pain and it works great for back pain also...ahhah...my last apt. with the knee doctor told me he could go in and clean up the same thing they did for you and i have arthritis in and of course with the age thing ...bone thing can't remember how to spell it ...not really bad it is before you get the big one ostephous it think that is it ...all i know is as i get older the body is getting more broken...ahhah...i wasn't into sports but i worked in a factories since graduation from high school...loved the different types of things i could do but probably was what has been hard on the body...enjoyment i am now paying for it but i did enjoyed all of it...have had the MS monster since 2004..i quit working in 200 and we moved up on this mountain and live in the out back country and we love all the wildlife not any that would eat me just squirrels ,many birds and deer ...beautiful...gods country ...just don't enjoy all the duggies that live out in the area ....have gained lots of weight not working and enjoying the goodies that i didn't eat when i was younger ...and of course just stopping smoking was the big start of all of the extra eating for it takes so good ...ahhahahhahaha..so funny now just not real healthy ...but life is good except this knee problem have had since the last summer while working in the yard raking up the pine needle to help prevent feeding a fire if came threw here ...anyway there was an old dried up stump and that i had kicked to get rid of but wasn't old enough and of course i fell and then on a log and then later fell again and again ...just bummed it up so much it swelled and couldn't bend it so had to go to doctor which sent me on to another so here i am ....hoping to get fixed so i can get back to waking better so i don't feel like it is going to come back at me and make me fall ... so here i am ...i enjoy talking to you and of course we have lots of people on here that have had problems with different things dealing with the monster of MS...that is how i keep it funny ...love and much happiness and may you continue to get better...laugh and smile it really does help at least it does for me...have a wonderful day ....
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Has anyone with Secondary Progressive MS been prescribed Ocrevus or is on it?
Should Ocrevus Begin Listing Hair Loss as a Potential Side Effect?
ms + cold + Ocrevus = not a good combination 
GOD IS GOOD
