Started Ocrevus today, first med... still finding our New Normal

[JMWCO]

My recent diagnosis in April has let us down many different avenues on what we can control and what we can't in my family. I believe that after all my reading/research and diving down a few rabbit holes that there is without a doubt more of us out there. I know this cause most Dr's don't tie the different episodes together to think "MS", you have to have something drastic happen for the to do an MRI and then it's more tests. However, there are communities like this one for us to rant, rave, support and share as well as our personal support systems and for that i'm frankly grateful.

So here's what i'm really wanting to do - talk about my current experience(s) as someone that is new to MS i'm sure there is value in my experience just like all of yours but this is just my experience not medical advise.

I fretted the past week as my insurance FINALLY went through this week as they were going to postpone my meds until it was - so I feel lucky as that could have taken forever. I used more vitamins between my diagnosis to now and will continue the vitamins for the ones I know are working for me. My excitement about finally getting on a med (our lives are a crap shoot without them so just do it. Statistically if you want to have some normalcy you need meds even with diet/exercise changes. I'm not a gambler but I do understand odds =)). Anyway, so when I arrived today to get my first 1/2 of my first dose of Ocrevus the checkin person said make sure i reach out for co-pay assistance once i'm home - something tells me by the look on her face that I should have done that PRIOR to today. (my quick advise you get insurance to approve and then you apply). Anyway, now i'm waiting on that.

As for my actual experience - I re-read the medical packet for Ocrevus last night (i like information remember). They went over possible side effects before dosing. Prepped me for my IV and gave Tylenol and Benadryl 25. Waited an hour for the pharmacy to prep my meds and then the next 3 hours were a mix of sleeping/blood pressure checks and cotton mouth. I had very view side effects during the treatment the cotton month was the worst and about 1/2 through I had facial and scalp itching. I was given another 25 of Benadryl which helped but not enough so my last does of Benadryl was 25 and that worked wonders - still had cotton mouth. Kept drinking water and was awake for the last hour of my infusion. I will also note I did my IV in my hand as that is my preferred place (I've had my arm, forearm and feet but not my neck yet (i really don't want to do that ever - creeps me out). The nurse did say that a lot of people avoid the hand(s) because of the injection of various drugs..I feel them but it doesn't bother me. I also wanted to try and do some work while i was being treated (workaholic) and my hand is WAY more comfortable than my arm or elbow. I then waited my hour post infusion and was sent home.

Stopped for a hearty lunch and a cookie cause frankly i needed some sugar.

About 3 hours post returning home I had a low-grade headache that was becoming more of a migraine and called the neuro office (side effect) and a fast heart rate. I was given the ok for just taking normal doses of Tylenol and to watch the heart rate. I rested the rest of the evening and by dinner I felt like a normal me - just tired but no body fatigue (WHOLLY CRAP I MISSED THIS It has been about 6-8 months).

I still have a bit of that headache, i'm heading to take my vitamins and get a good nights sleep. I have less than 24hours from my treatment for side effects and 2 weeks till my next dose.

I have read a lot on Ocrevus and I realize that this is my first med and hopefully i'm on it for a while and it works for my new normal. Good luck with yours and like most of us - we take it DAY BY DAY. Enjoy it as we only have one life to live and we all want to live well.

Good night and good luck to us all.

[ssdw1958]

Hi JWCO you sound like you have it together which is a good thing. Did you get any work done just asking because I brought a couple of magazines to read and they never made it out of my bag because I just fell asleep.

I hope you are doing alright with your treatment meant. Oh one thing did you get a metal taste in your mouth that would be the steroids I was told by a nurse the best way to get that taste out is to have chocolate it does work. I figured never argue with any one knownwho tells you to have chocolate.

Oh I never introduced myself self I am ssdw1958 I was diagnosed with MS in 2004 and I also take ocrevus I live the USA. You've come to the right place to take about this disease but you have to know we as are not doctors but we are a good group of people who are in the same boat.

Have a good weekend.

Bye for now.

[JMWCO in reply to ssdw1958]

Ssdw1958, nice to meet you. People don’t have to be drs to share experiences which why I like to read these threads. 😎

As for work, yes. But I was overly ambitious thinking I’d start out that way. My first dose of Benadryl got me a bit so I opted to sleep but once I was ½ though and got the other doses I was up and worked.

I know for next time just to plan for resting, maybe binge watch a tv series or do work. So I have options. 👍

[ssdw1958 in reply to JMWCO]

Thanks and enjoy the weekend. I hope you have sun where you are right now it's 80*f but tomorrow it's going down low 60*f new England go figure. Lol

[jimeka]

Thank you for your detailed account of your experience with Ocrevus. It will help a lot of people who are on it or who are about to have it. I hope and pray that it works for you. Do you mind telling me what type of ms you have been dx with. Thank you blessings Jimeka 🦋 🍫

[JMWCO in reply to jimeka]

I’m a RRMS. In hindsight between having two small kids and a few odd events over the years they estimated I most likely had it for 3-5 years.

I have 3 lesions in my c-spine and several in my frontal and ventricular lobes if my brain.

[jimeka in reply to JMWCO]

Thank you 😊

[greaterexp]

I’m glad you’ve joined us and are so willing to share your experiences. I’m also glad to hear that your infusion went well!!

[JMWCO in reply to greaterexp]

Thank you

[JMWCO]

Thanks. So far day two is just starting out. But I feel tired but next to no body fatigue. 🤘

[kdali]

Glad it's working for you!

[JMWCO]

Day 2..... well I’m trying not to get my hopes up too high but this is the most ‘normal’ I’ve felt in months- it’s almost like a dream. I am tired as I mentioned after the infusion but still no body fatigue- that had to be one of the hardest things for me with a business to run and kids to raise. I can only hope this continues as that would be amazing.

I did have a few tines mines this afternoon my skin was itchy (short lived) and my feet have had some odd sensations but otherwise it’s been a good day. Unless things change I’ll post an update for the 2nd dose.

Enjoy the weekend everyone.

[Fancy1959]

JMWCO, it's Fancy1959. I've been doing an ongoing series of post about ocrevus. If you go back and search about 3-4 months ago you'll find a series of responses and comparisons of people in the chat room who have been on ocrevus. I did kind of an unofficial poll but it provided a lot of basic information and my help you since you just started taking ocrevus. So far I have had no side effects from the actual infusions, other than with the Benadryl. I hate Benadryl and it makes me very sleepy. I warned the nurses about my low tolerance for Benadryl and they didn't believe me and give me the full dose. I slept on and off all morning and when my lunch came they woke me up for lunch. So the nurse comes back the check on me in about a half an hour and she finds me sound asleep face down in my lunch plate. She freaked out. She thought I was having some type of bad reaction or worse. Once she woke me up we both had a big laugh over. Then 2 weeks later I did the same thing and freaked the nurses out again. Now I only take a very small dose of Benadryl and I take no IV Benadryl just half a dose of oral Benadryl and I do much better with that. Anyway I am very glad you have found our chat room and you've become a part of our extended family. Until we speak again please take care and remember that together we are stronger! Fancy.

[JMWCO in reply to Fancy1959]

If it helps my husband can barely take a ½ dose of Benadryl without passing out. If he had all I did he'd be in a coma...LOL.

[Wizardsmom]

Hi JMWCO, I also enjoyed the story of your first Ocrevus infusion. I had my first half dose of Ocrevus almost two weeks ago. I will have the second half dose this Thursday, so I am between the first doses as well, and I feel great!

I was glad to read about your experience so that now when I am feeling good I know it's not just me. It is possible to feel somewhat better, even though I have MS. I have high hopes for this medication because it is the 5th medication I have been on in 3 1/2 years.

Anyway, i hope everyone has a great Memorial Day weekend!

Krissy

[JMWCO in reply to Wizardsmom]

It's good to feel great except, the waiting 90 days to really see improvements based on Ocrevus. Which actually leads me to sadly say I MAY be having a flare up as I start this treatment. I still feel great overall except for my feet - having some odd sensations and tingling but that maybe MS or something else. Overall, I'm still positive adn feel good so I'm looking forward to things maintaining as the meds do their work.

I hope you have success on this one and as medicines target more specific cells the better we all our with what is coming in the future for treatments. Keep in mind almost all meds that come to market have been tested for 10 years in trials - they just may not have the saturation we all want in the market place but the results for this one and the more modern round of medications are promising. I have to have hope for you, myself and all of us that anything leads to a healthy and decent quality of life is worth it. Besides I need that not only for myself but my family.

[Fancy1959 in reply to Wizardsmom]

Wizardsmom and JMWCO, please keep in mind that the best results so far that patients taking the DMT called ocrevus have achieved are somewhere down the road in the one and a half to two and a half year range of taking the drug. So hang in there long-term, like I plan to do, and let's see where this new wonder drug and take us.

I've only been on the drugs since last September and I have about an 80% decrease in my spasticity and I'm feeling stronger after my second infusion this past April. So don't give up too soon and keep everyone posted about what you are experiencing and any positive or negative results you see while taking the drug. Once again I encourage both of you to go back and find my post I did called Ocrevous Poll that I did some 3 to 4 months ago There you can read a dozen or so people's responses, results, and questions about the DMT. It might give you a lot more information and make you think about questions you want to raise. Contact me back if I can help or put a request in the chat room out and I bet you a bunch of people respond back to you. Thanks for bringing up your questions because we have much we can learn from one another. Together we are stronger!

[Wizardsmom in reply to Fancy1959]

Thank you for the information. I heard it can take a while, and maybe it's too soon to determine, but I feel the best I have ever felt on a DMD, and this is my 5th.