Dear friends !
My son rec'd the second shot...all is well thus far. Feeling lucky to report this. Has anyone here had an acne flare up? Or the next day feeling sluggish?
Per the registered nurse this stays in the body for 28 days and to be cautious if going out to a large crowd, events and such. Has anyone has a reaction of getting super sick?
Thank you all for your time and wishes, Haku
Which medication?
Ocrevis
I can reply about my experience with Ocrevus infusion. It was given with a steroid shot, which can cause acne, but I don't eat sugar or carbs while also on steroids so I did not have this issue (I am acne prone). Yes, I was more tired for 3 days after the infusions. There was no additional concern about germs (I have small children in school, and we traveled like normal people). I was no sicker than anyone else with viruses that I caught during my treatment experience. Bacterial infections are a concern for some on this treatment, and mine were treated promptly, so I was never super sick with any type of infection.
I hope this helps you!
kdali good to hear- so just go with life as is. What about hair fall-out? Stay well and thank you for the reply
Yes, my hair thinned, my lashes grew shorter, and my eyebrows lost chunks of hair. I tried a few vitamins that some suggested, but they did not change anything.
Oh no...I guess safeguarding your health is much better than having hair. I am going to get my son on Nutrafol it is an OTC- I had to try it because I felt mine was also thining but that was because I was bleaching my hair. I can say that it is now back and my lashes grew. As always I am not a doctor so I will ask the Neuro and Primary if it is okay to take these vitamins. But was your loss temp or long term? I actually did a search on this site and this lady was also claiming that. I wish all of the side effects would be pointed out clearly- even if it means you would get a purple dot. Thank you for your reply!
For sure, I would gladly be bald if that meant MS would stay in remission! It was exhausting to wash and dry my hair at the time anyway, so I bought cute hats.
I would not expect your son to have hair thinning, it only hits some of us. I have had this with 3 meds, and it's mostly temporary. I lost chunks of hair once, which was quite painful, and those areas have remained thin. With Ocrevus, my hair would grow again around the 3rd month, and then fall out after the next infusion. It was not painful, and not noticeable to anyone but me and my stylist.
Many people have taken vitamins to help their hair, so I think if he has this issue, which he probably won't because he's young and healthy, then trying them with the MD approval can't hurt. Or, he can get some cute hats 🥰
Side effects are unpredictable. Some are not listed and very unusual. I have a list of weird things that have happened to me on every med...no purple dots yet, but I wouldn't be surprised 🫣 I would definitely welcome purple dots on a bald head 🤔 it is my favorite color 🥰
Most people have zero complaints! He will probably sail through this just fine.
kdali thank you ! You made me laugh 
Thank you again for your reply- I really appreciate this. Stay well and keep in touch !
I was going to say the same things as kdali. Steroids likely cause of acne outbreak so should clear soon. I didn't have any hair thinning. I get my infusions on Fridays so I have the weekend to relax before going back to work. Sometimes I am more tired, sometimes not. My fatigue level does seem to increase about a month before the infusion and gets better a couple weeks after the infusion. Some people experience what is referred to as crap gap, where MS symptoms increase before the infusion. Some are getting the infusion every 5 months instead of 6 months to manage that. My increased fatugue isn't bad enough to do that.
There are all kinds of possible side effects but mine have been minimal. Sometimes the lymph nodes in my neck get tender for about a week.
I have only had one UTI in the 8 years I have been on Ocrevus and am sure it was not related to Ocrevus, cleared quickly with antibiotics just like my previous UTIs. I have had Covid 3 times which took me a while to recover from each time.
🙏🙏 all goes well for him!
A little tired, yes, but not acne. I wonder if the small steroid pre dose might do that? I don't think it's an Ocrevus side effect.Generally, people who have had really serious infections tend to be older, as natural immunity wanes over time. They also tend to be people who have developed low immunoglobulins from the Ocrevus over time, and have other health problems.
CatsandCars howdy! Good to hear from you. Perhaps the steroid might of triggered that. So far he is doing well- what a relief ! The visit is 4 hours long - there is an entire process that goes into it. The infusion room has low lighting, ocean sounds- I wanted to stay back so I could take a nap! LOL...I ended up in the hallway waiting but I had my laptop so I could continue to do my 1st job that pays
So thrilled to hear that everything went well! Yep, it's a long infusion, but I don't mind sitting around reading on my phone while nice nurses wait on me, LOL. The only part I don't like is that I keep having to ask to go to the bathroom. They have to take off the blood pressure cuff and I have to drag the pole with me to the bathroom repeatedly since they give you fluids to hydrate you. 🤭
CatsandCars So glad to hear you are having this amazing experience with the nurses and truly I feel that my kid has the same experience as you have. These nurses are so calm and very understanding. Honestly his nurse was so calm, that I also wanted to take a nap in the same room- she was lovely. Lets hope these infusions keep working and hopefully the science will start to acquire the findings as to why so many folks are getting affected with these auto-immune issues. Stay strong and lets keep talking CatsandCars
Seriously, nurses are amazing! Except that the appointments are usually first thing in the morning, I don't mind getting infusions.
On most days, all of the research going on really gives me hope. You stay strong too. Your kid is lucky to have you in his corner! Absolutely, we will keep talking. 😊
Yes it is a long process. I usually take my laptop and a couple of DVD movies to watch while getting the infusion. I've never had a hair loss problem or acne or really any side effects that I have noticed.
Hi 👋 I had an infusion of this a month before Christmas in 2022. My husband caught covid a couple of weeks after, and he was terrified of passing it onto me. However, I wasn't scared, because if I had caught it, I would have pinged positive on covid tests. Our roles switched, where he was the patient and I was the doctor/nurse.
The acne stuff, I don't think I get affected by it. I had an infusion 2 weeks before my wedding last year, had my makeup done on the day, and I couldn't see any spots on my face.
However, I might be a lucky one 🤔 I don't really get any side effects from meds. All I know is that antihistamines make me sleepy, and so I fall asleep during the treatment.
Cwright170994 haha isn't that always the case Yes you are one of the lucky ones that doesn't get these pesky side effects. I noticed my son did fall asleep for the majority of it...Sounds like your wedding went well too and congrats !
That's the magic of antihistamines 😁 sleeping tablets, like Nytol, work on that magic 👌And my wedding did go extremely well! I had a couple of people come uninvited to my reception, but they were old coworkers from back when I worked at a KFC, so that was a nice surprise 😁 one of my uncles videocalled my other uncle, because he now lives in Australia, just so he could watch me go down the aisle and go through my vows. The wheelchair was there as a backup, just in case my legs didn't want to play ball, and my sister decorated the wheels with fake flowers that matched the other flowers. They were forget-me-nots, so a good symbolism for the wedding. It's very unlikely people would forget me though. I've always got a smile on my face, but when I don't, there's usually a good reason for it and you should be scared/concerned 😅
Cwright170994 You are an inspiration. We all take walking for granted or other things we do. Thank you for sharing your story, truly makes me happy that you had your wedding with no glitches. Stay strong~ Haku
We definitely DO take things for granted 😢 between 2015, when I got my clinically definite diagnosis and 2020, I was fine walking and being on my feet. I was able to walk to hospital when I was doing my student nursing degree, when I was standing and doing stuff at a KFC when I worked there, and I was fine walking from the train station to my next place of work, but then I felt my legs were on their way out, so I had to quit and get myself on PIP.I'm happy that I've been an inspiration for you ❤️ I hope you provide inspiration for others 🫂
I have no serious side effects I'm now on home infusion its great and my wife is there along with the nurse good luck with the side effects
Tazmanian at home infusion- sounds fancy! You must have good insurance. Happy to hear you do not have side effects! It calms my anxiety, my son is just dealing with it all quietly.
Hi, I just finished my 2nd half of my first dose of Ocrevus 10 days ago. I haven’t noticed any acne or hair falling out but I did have a slightly upset stomach for about 24 hours and tender lymph nodes in my neck. It didn’t last very long though. I now notice I am sleeping much better and have an overall sense of well being I didn’t have before. So far so good. I’m glad I started it. Hope you and your son are both happy and doing well😊
KGrayiskindaok you and my son are on the same schedule with Ocrevus. He just finished his last infusion aka chemo and the next round in October . Interesting that you are sleeping better, he is like a vampire stays up all night. I noticed his sleeping pattern from the last 2 days is regular. He hates the day time and sun. He is a bit like me in some ways with this terrible lack of sleep or stay asleep. We are both low on vitamin D. That said I am making sure we are supplementing with the sunshine in the bottle. I don't understand the science that just 5 minutes out in the sun provides enough vitamin D. I started to just do things in the yard enough to get the sun rays. It is all so confusing with all of the skin cancer, the doctors telling the public to stay out of the sun, wear hats, sunscreen... Perhaps alot of these health issues are stemming from what we are told not to do and follow. Stay well and stay strong~Haku
Hi, Haku949! I am late replying. I've had 9 Ocrevus infusions now. My heart beats fast for about 8-10 hours afterwards. My hair is thinner now, but I'm 63, so..... that could be the cause. But that's my only side effects.Best wishes to you & your son as you find your new normal. 🙏
Mollyabigail thank you for the reply and wishes. He got on the second Orevus infusion so far he is doing fine. His hair still looks normal. It is certainly the new normal for him and me just trying to navigate this. Lets hope for the science to keep improving! Best wishes to you, Haku
Second Full Ocrevus Infusion
2nd Ocrevus infusion.
My Ocrevus Infusion...? 
