I am looking for any experience/advice about how badly Ocrevus could kick a person's immune system and what I should do to prevent sickness? I've read all the literature, searched the internet endlessly & then some. My 14 year old daughter starts on it next Monday, April 15th. She was supposed to start this week but she has a sore throat viral bug. We were going to go to NYC this week-end & I was gonna have her wear a mask to keep from catching anything, but I now think that is too risky. (flying back the day before her first ever infusion) Plus, she is in 3 big dance competitions over the next month, in between her infusions. I called Ocrevus & they gave zero information about the REAL side affects/effectiveness of Ocrevus (Rituxan remake). They just offer up the results of some tiny trial done years ago. I know there are 80,000 people on it. Where is all the data? This is infuriating. My doctor has been using it since it came out a couple years ago & he has been using Rituxan off-label for MS for many years with great success.
Our awesome doctor is very confident that she will do better than adults since she technically is a young adult. (Menses has begun, pretty much at full height.) He said he worries about the old adults not the young ones. His nurses are super worried since they have never infused a child. I can't get any information from our second opinion Pediatric MS Specialist at NYU Langone MS Pediatric Hospital since we have not had our first appointment yet. I know folks on Ocrevus & they have zero side affects except a red face during infusion time and maybe feeling sluggish, run down for a few days after.
Also, our doctor might move her to Rituxan later on if we have any issues because the dosing is a little better (you can spread it out.) I would like her to get a smaller Ocrevus dose than 300mg (then 300mg again in 2 weeks). But the drug company will not allow that. If there is experience out there, I would love to hear it. The one Ocrevus vs Rebif trial that I read said that that there was no difference in results between the highest dose & lowest dose that they gave. She weighs 105 pounds. Thanks for any and all input! You guys are wonderful!
Cher
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LorenzoOilMom
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I understand your anxieties over your daughter starting this, as there doesn’t seem to be much information about younger people on Ocrevus. I’m no doctor and can only offer my thoughts.
Short of living in a bubble, I think that once she starts the DMT, hand washing is of utmost importance. Avoiding people you know are ill is obvious, but we can’t always know when people are at their most contagious. Simply stated, we just can’t protect ourselves against all illnesses, but can only do our best. Understanding her body and what she seems the most susceptible to may be your guide to preventative measures in the future.
As always, when we take any substance into our bodies, we must weigh the benefits against the risks. Her doctors must feel that her MS warrants a DMT like Ocrevus. You’ve obviously done a lot of research into this med, and her doctors are using their knowledge to guide you in this decision. Remember that Ocrevus can be stopped if it doesn’t seem to work well for her or causes problems.
Your daughter is so blessed to have a mom who so concerned for her. I hope you all find some peace. We wish you the best, and I hope you’ll check in with us often to let us know how you all are doing.
My experience this winter was that I caught everything I normally would have but my response was normal, as in I wasn’t almost dead from a runny nose, which is actually an improvement for me. Mask, hand washing, adequate sleep and proper nutrition is all I can say for prevention.
She is adult sized as far as the the medication goes. I’m sorry they told you they were worried because of their lack of experience with infusing a child, you don’t need any extra concerns right now. Ocrevus is more effective with a lower BMI and her numbers may stay at desired levels for 9 months instead of 6, for example.
I don’t think I noticed much about the second dose like I did the first, except a horrible headache from the steroids both times. I would love to have 300mg every 3 months, but they don’t do that yet either 😩 Some people get an itchy throat and a second dose of steroids.
Lots of love to you. I can’t imagine my baby girl with this dumb disease. Please let us know how she does, we don’t hear much about MS kiddos here.
Glad I could help! I believe there were a few posts this winter that you could search for from people starting Ocrevus that were concerned about viruses or immunizations (and what their MD’s recommended, etc), and a lot over the past year of personal experiences with getting the first dose.
Glad to hear you have confidence in your doctor! I remember you were worried at first. Is this the original guy or did you find a pediatric specialist?
We fired our first MS Doc who was new to town, he was a pediatric specialist-suposedly. We wouldn’t know cause he refused to share anything with us about his experience at the Dallas pediatric hospital or anything about MS meds. Our second and wonderful MS doc made an exception came out of partial retirement to take on my daughter-he loves kids. He used to have 30 kids with MS now he has literally zero .
greaterexp and kdali gave you great responses. I don’t have much to add except a couple of things.
Be aware that the mechanism of Ocrevus makes it important to carefully time vaccinations and vaccinations will be less effective in general. There is little info out there about this and a lot of doctors don’t bring it up. You can find a couple of discussions here about it if you search on a Ocrevus. The good news is that your daughter’s youth means vaccines in general are more effective on her than us older peeps.
I’ve been on Ocrevus for over a year and have stayed more healthy than I expected. I was worried that I would get sick more often because of the affect of Ocrevus on my immune system. I work hard to stay healthy in general by what I eat and regular exercise. I’m careful to stay away from sick people as much as possible. I wash my hands a lot, keep my hands off my face and use hand sanitizing gel when I’m out in public touching a lot of surfaces like handrails etc. That last one is probably overkill but it makes me feel like I’m doing everything I can. I recently took a trip by plane and was nervous about picking up some bug. There were clearly sick people on the plane but thankfully not next to me. I didn’t get sick from that.
Thank you for sharing! We are aware of that whole vaccination issue and I’ve studied it intensely. I love what you said about really not getting sick anymore than prior to Ocrevus. That’s exactly what our doctor said his experiences has been with all his Ocrevus patients.
LorenzoOilMom I've had no issue whatsoever on Ocrevus despite it killing more than my Bcells (Tcells as well). The usual precautions of washing hands often that everybody should practice anyway kept me completely out of any cold or flu this winter. Because Ocrevus seems to have been a bit more aggressive on my body than normal, I have blood tests regularly and not I'm waiting to hear from the neuro whether the next dose will be full or half. (I weight 115 pounds).
when I got diagnosed last year and the neuro presented me with the various treatment options, I had no hesitation and asked him to put me on the most aggressive one. It happened to be Ocrevus. My personal opinion (and I'm not a doctor) is that stopping any further damage on the brain is the priority. And it worked very well for me. The MRI 6 months later showed no activity.
I would not worry but ask all the questions you feel you need to ask.
you r a great mom,everyones experience is different,the head nurse at the infusion center told me since your immune system is down, think of it as flu season, stay away from people that are sick, coughing sneezing,and most of all stay away from buffets,and salad bars,very germyI thought that was interesting,and wash ,wash sanitize hands .I did have a reaction of a scatchy throat twice,they stop infusion and give you more steroids,it was weird,one minute fine and the next an extremely scratchy throat,after more steroids goes away instantly.I personally loved the steroids,they gave me sooo much energy,i could clean my house and yours and wash your car .I didn't know my dr office has a separate place to sit to stay away from germy people(dr office full of them),maybe yours does too,i guess just ask.if she is going to fly I would get her a face mask.precious little girl,tell her hang in there
You are so funny , thanks for sharing your experience about the steroids. We definitely have facemasks for the airplane for when we fly to NYU Langone to see the MS pediatric specialist for a second opinion.
I am quite a bit older, but have been taking Ocrevus for 2 years now. I am always careful to make sure I stay away from anyone sick for a couple weeks leading up to it. My first time was half a dose and then the other half later. I was a bit tired and ginger ale helped with any upset stomach feeling. A goodnight sleep and by the next morning I was totally fine. After the first time I've not had an issue. I live in NYC and the weather is beautiful - Enjoy!
Thanks we are headed to New York City To see a pediatric MS specialist at NYU Langone. I love New York City and from Jersey I can’t wait. We live in charlotte now. Reagan felt so much better today, Wed after her infusion Monday and being kind of sick with a fever and very achy yesterday.
I have been on Ocrevus for 3 years, started on a clinical trial. I have only had one mild cold in that time with just a mild sore throat and fatigue for 3-5 days. I get zinc lozenges like Cold Ease to suck on anytime my throat even starts to feel scratchy and it goes away without turning into a real cold. I know people promote vitamin C but studies show zinc is what really works to fight colds. I don't do anything different than I did before but I am a nurse so wash my hands all day at work and get a flu shot every year. Outside work I don't worry about hand sanitizer or wiping my grocery cart handle or any of that stuff. I am not around crowds much other than at church so likely have less exposure to sick people than a social teenager would. As a nurse my suggestions are the same you and the others mentioned; eat well, exercise (her dancing covers this), avoid sick people, hand washing and flu shot.
As far as side effects other than a slight facial rash during my first half dose that went away by slowing the infusion (it runs at normal rate now without a problem) I have noticed my glands in my neck are tender and maybe a little swollen for about a week after the infusion and a little more fatigued but that could be due to the fact I end up napping during the infusion because of the Benadryl and have trouble sleeping that night from napping and the steroid. I have started taking the day after my infusion off work as well because of the sleeping trouble.
Be sure to bring snacks and things to do to help make the time go faster. You may be provided lunch or may need to bring your own. She will probably sleep some of the time away. The Benadryl can make your arms and legs feel heavy, so don't worry if that happens.
You can only prepare so much and then it will be easier after the first infusion is experienced first hand. Sounds like you have prepared all you can and now it is time to trust in the doctors and God.
I think they mean if you are sick and take the medicine it will just bring the sickness Out full force and if you have something bad then it could possibly hurt you but I don't really know I'm on ocrevus and I've done good I had my first full infusion not that long ago and I feel fine today I pray for her she is so young good luck I will pray for her
I can only offer you my own experience with Ocrevus. I have had zero reactions to the infusions (my third is next week). I have to say I’ve really suffered zero side effects as well. I’ve never gotten a flu shot, never had more than a bad cold here and there and I’m 60 yrs old. That being said, I’ve found Ocrevus has at the very least, kept me at a plateau of progression.
Your daughter has her youth, otherwise good health, and from your mention of dance competitions she’s obviously exercising - very important to continue with that. It will really help with keeping her strength and balance. And she has you to have her back as her advocate. Also very important!
It’s discouraging to hear of so many young people being diagnosed with this insidious, unpredictable, s**tstorm (sorry, just can’t help it sometimes!) of a disease, but she’s in control. She has to listen to her body - do whatever she feels she can, keep moving, live her life and rest when her body tells her to. I predict she’s going to do well on Ocrevus, my prayers are with you both...
Sorry you’re daughter is going through this, but to add to the many helpful posts above...we keep in mind that MS is also known as the “snowflake disease”...as there are no two cases alike. Even though it is considered a “progressive disease process”, it may not progress for many years to come or not all all...although that is not as common. You haven’t mentioned what type of MS she was diagnosed with, but newer treatments and a push for cure will always be explored, giving continued hope for many sufferers...especially for our youth who have that kind of time.
Your daughter is still very young and can lead a very productive, long life. While working with the doctors involved in her care, she still can be as competitive as she feels up to it...as long as the docs know in advance. I recently saw my primary who advised me not to get the blood flowing yet at the gym after my Ocrevus infusion, until I’m medically cleared by my neurologist first. I’ve so far had my two half doses and, like others, have faired well.
We know DMTs can suppress the immune system...designed to stop the self from attacking itself. Being mindful of exposure to others who may be currently ill is helpful, but we know being exposed doesn’t always mean we get sick every time. So, even though a healthy lifestyle and hand washing are some great ways to minimize risks, we still can’t live life in a bubble...otherwise, we miss out on all the treasures it has to offer...especially when we’re younger and adventure is just beginning to unfold! Prayers for your daughter and that God leads you both throughout life’s journey! 🦋🌺
Thank you so much! They dont know which MS she has but it is bad- we think Primary Progressive. At 14, she has 16 brain lesions- 3 were enhanced (active attacks) so she was on high steroids for 5 days. Spinal tap ogluconal bands confirmed MS. Plus spine MRI then showed several more lesions. She starts on Ocrevus next Monday (or sooner if she gets over her cold). Thanks so much for your helpful words!
I feel for you as a mom and, of course, you’re daughter...no one wants to see a child go through any of this. MS is something that requires careful monitoring throughout life...no matter what type. We either choose to treat it or risk potential consequences. Its unpredictable nature may be the most challenging part for some. So, just like any disease process, it’s important to consider the whole person when formulating a treatment plan. This includes careful attention to body, mind and spirit. It’s always helpful to take it one day at a time...embracing life fully in the moment...loving unconditionally and listening with heart...children are good at doing just that...please keep us posted...we’re all here for you anytime. Sincere prayers...God bless 🦋🌺
Hello. I just saw this post and am interested in how everything went?? Or how you decided to proceed? I’ve had ms since I was 21 but did not start meds until 1998 after my fist son was born. Praying everything went well!!
My daughter did great. No infusion reactions during both the first & second 300 mg doses two weeks apart. She was given Benadryl & steroid both times through IV, which I think was overkill the second time. She then was sooo wiped out the rest of the day. The second day she got bad headaches & then she had very sore muscles (to the touch), also her joints were sore. It took about a week of gradually getting better. We believe Ocrevus is the best drug out there, so we are very hopeful that she will have no further attacks. It has only been 2 months since she was diagnosed. We are so grateful that we are able to proceed with this medicine. (Still fighting insurance but proceeding anyway.)
Her eye is almost all healed (not from the Ocrevus) and only gets slightly fuzzy after a very heaving dance workout. She had one big competition last week and she did great. She has not gotten sick either. It was risky to let her go to that big competition, (lots of germs) but we can't live in a bubble.
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