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It’s hard to believe that we are reaching the one year marker since Zach’s episode. A lot has happened in our lives since last year! I will be honest…coming up on that one year marker does make me nervous. I’m irrationally afraid that he’ll start having symptoms or another episode just because it’s that time that he did before. It’s crazy to think back to a year ago and think that we didn’t know what was coming. We really just don’t ever know what is around the corner, do we?
I wanted to do another update though now that we’re officially switched from Tysabri and have begun the new treatment plan with Ocrevus.
We have been very eager to get rolling with Ocrevus. We knew Tysabri was a short term plan and that Ocrevus is the longterm one. I’m the kind of person that likes to feel settled and I just want to get on our regular plan so I can feel settled and content. I feel like I may truly feel settled with this “dealing with MS life” by this time next year. By then Zach will have had his 3rd dose of Ocrvus AND we’ll know for sure that all the financial stuff is handled. And if by then he still doesn’t have any symptoms or another episode I will probably feel better. Or maybe part of dealing with a lifelong disease is that you never fully feel “settled” and I’ll adjust to these emotions and back-of-my-mind concerns as a new normal. Either way, give me a year and I feel like I’ll be more solid 😉
With this being his first dose of Ocrevus I needed to come along for it. It’s important to have a loved one there just in case there is a reaction to the drugs. Plus I WANTED to go. Now that it’s an every six month thing I’m hopeful that we can make a fun date out of it and he’ll let me tag along for all of them!
We went up to Atlanta on Sunday July 16th. We stopped on the way at Maggiano’s for a date and then headed up to my home town to spend the night with Laura and Gino (Robyn’s sister and BIL who are SO sweet to open their home to us!). If Zach does let me come in the future I think it’d be fun to just really make it a BIG DATE. Splurge on a hotel room really close to Shepherd and we could make up our own restaurant review and each time we go we could try a different restaurant in Atlanta and rank them. Wouldn’t that be super fun? I’m working on him about it 😉
We got there nice and early for the appointment and I will admit that pulling in brought a wave of emotions for me. I haven’t been there since Zach’s first infusion last time . It’s another plug for me going with him because I will feel more comfortable there if I go more often. Something to note is that it’s FREEZING so it’s important for both Zach and I to wear layers and bring socks!
First we met with his dr who happened to be a PA this time. I’m usually a BIG fan of PA’s. I typically prefer them to the “legit dr” but in this case I would have preferred not to see who we saw. She was clearly more new and she just wasn’t very comforting nor did she use very good terminology. I know it may sound nit-picky but telling me the meds will “delay debilitation” sounds a lot scarier to me than “prevent debilitation.” Zach said that NO ONE he’s seen there (and let’s remember he’s been going every 28 days!) has used the word “delay” and that he truly just thinks she doesn’t know his case or his situation or hasn’t been fully trained what to say/not to say yet. I’m all about that grace but whew I wasn’t feeling too great about her!
I did poke a bit at her regarding saying “delay” because I am so hardcore about knowing what to expect. If we should be watching out for something to happen, I need to be aware to watch for it! She said that IF anything were to happen it’d be similar to what happened before. Since his only spots are in the same area they’ve been in then it’d be vision related issues.
He zoomed through all the tests they did with him. I loved hearing people comment on just how great he’s doing. She reviewed MRI results and said that everything looks great. Which means that his old spots stay there, but they do not get worse. He has no active spots either which was a relief for me to hear! It also means there are no new spots which is a blessing.
I was glad to be outta that room and am hopeful that next time I go we will see someone else (Zach has a guy PA that he really has bonded with and I hate I didn’t get to meet him!).
We went into the infusion room (where it’s freezing!) and got set up. With Ocrevus they split up the meds into two doses for the first time receiving it. So on the day I was with him Zach got 1/2 the dose and then he had to go back up 2 weeks later for the second half. After this initial dose though he’ll get the meds every 6 months.
Usually the infusion itself will last ALL DAY. But since it was a half dose it only lasted around 4 hours. When it started they put an IV in and put different medications in prior to doing the infusion. These were to help common side effects they’ve seen with Ocrevus. They did an anti-nausea one and benadryl. They also went over side effects to watch for after. I took a pic to refer back to, many of them were VERY minor so you wouldn’t think you need to call but it’s good to know that they could be signs of more serious things.
The Benedryl knocked Zach out COMPLETELY. I got a lot of stuff done! He feels bad having me sit there but y’all it was AMAZING. I buzzed through so many things. I actually even got caught up on my inbox messages/emails/dms etc and it was so AWESOME. I also went down to the little food court area and got a coffee to help blast out a headache I had. I truly enjoyed my quiet time 🙂
After the infusion was done he had to wait an hour to be monitored then we were free to go! Overall pretty smooth day and it all went well! We didn’t notice any issues concerning the infusion. They said the most common one they’d seen was a rash and that didn’t happen with Zach.
I will say leading up to the infusions I’ve noticed he gets a little more easily irritable. I don’t know if it’s just been timing, or the new job, or heck even lining up with my cycle somehow but I can tell a difference in his overall mood after an infusion. He seems more at ease and like himself! Maybe it’s just in my head or maybe his body just really does respond that well that quickly to it!
Following this infusion he did have some nausea feeling and had a few nights where he didn’t sleep very well. Again though, he’s got this new job with a LOT of added stress so we feel pretty confident that’s the reason for sleep issues. We did note it that way if it happens after future infusions we can let them know.
This new infusion is a change in our scheduling. It’s a BIG blessing not to have to go every 28 days. Now he will visit Shepherd every 6 months for the infusion (which are the visits I’d like to go on!) and he will visit Shepherd 3 months between each infusion for a check up and MRI scan (which those appointments I won’t go to). Cutting from every 28 days to every 3 months is awesome! We’re looking at 4 times a year instead of 12!!!
The needle is a lot bigger for this one and it’s a LOT of meds hitting his system at once so it makes sense that it’d affect him a little more than the other. His arm is sore from the meds going in and I’m thankful he’s so tough about stuff 😉 I’d probably be crying and freaking out with needles!!! I couldn’t watch them insert it. Barf city.
Overall if you were to ask Zach how his life has changed since MS he’d probably talk about his immune system. The infusions are meant to WEAKEN your immune system. And they are working! It’s a blessing and a curse b/c while we’re thankful they are working and doing their job, Zach is like constantly sick. He always has some sort of bug or illness and it’s just not something he’s used to. His whole life he’s had a CRAZY strong immune system and so he’s just not used to getting sick AT ALL and when he would get sick he’d get over it super fast. Not the case anymore!
The positive thing about this is that his mom’s immune system is so strong that it even fights her meds she takes. So she has had to keep switching medicine options with her rheumatoid. Hopefully since Zach’s immune system is clearly being weakened by the meds it means they are working, that his immune system isn’t fighting against the meds, and that he’ll be able to stay on this treatment plan longterm without issues!
The downside is that he can’t take anything to boost his immune system (because hello that would counteract the meds!). He’s great about taking all of his vitamins (which include a daily probiotic). I have also purchased a car diffuser for him and plan to have him some oils going in his car! Any other tips and tricks to help fight off sickness? He drinks smoothies for breakfast with oj and fruit so he’s getting that too. I think I’m going to get him some sanitizer wipes and maybe he can get in the habit of wiping down the desks where companies put him to work? He’s just in contact with SO MANY people each day that it makes sense that he’d get sick so often! It’s hard to keep from getting exposed to sickness going around when you’re hoping from business to business every day! Any tips to help keep the crud away would be appreciated 🙂
He has a tradition of a post-infusion treat so we stopped on the way home and got yummy Arby’s milkshakes!
Cheers to a successful infusion and hopefully the start of Emily coming to more visits 😉
I do want to comment on something just to make sure it’s clear. I know that most people haven’t even heard of MS. Heck when they first told us about it I thought it was ALS and really freaked out. It’s easy without having a lot of knowledge on something to make recommendations that may not be based on facts. I appreciate anytime anyone reaches out, but it can be awkward when I get recommendations for things. I actually had some random person in McDonald’s today tell me that Zach needs to go to Mexico to get a tapeworm and it’ll cure his MS. I’ve had several people reach out saying that eating vegan cures MS, certain supplements cure MS, diet changes cure MS, oils can cure MS.
And y’all I appreciate everyone thinking of us. And I believe that these things work! I believe that a healthy lifestyle can for sure help minimize MS symptoms. Any and all of these options are wonderful to have in our toolbox when living a life with MS. But MS is not curable. There is not a cure. So even though we fully plan on Zach NEVER having another episode…he will ALWAYS have MS. Totally bring on the tips for not getting the common cold due to his infusions, bring on healthy lifestyle tips that can help him feel good and stay healthy, but please just don’t tell me that anything CURES MS. Because it just doesn’t.
Looking ahead we feel confident that Ocrevus will continue to be a good fit, that Zach will adjust to the lowered immune system and we’ll find some ways to combat it so he’s not sick all the time, that we will get in a good set routine with his treatment plan and that he’ll continue to remain symptom and episode free!
Thank you for all the continued prayers! I feel like I’m in a good place now as far as being able to talk to others about MS so if you hear of someone walking the path of diagnosis, feel free to have them reach out 🙂 While I’m clearly NO expert I’m totally happy to help share what little I’ve learned and our story!