Ok, so it's 11pm where I'm at and I cannot sleep. I was just diagnosed with RMS in February this year and after some careful thought, I chose to start with aggressive treatments to better my chances of slowing the disease progression. I start Ocrevus this Friday the 19th but keep thinking about all the possible side effects, from scratchy throat all the way to cancer. This plain scares me. To the point that I feel like I want to cancel my appointments and just not go on any therapy. Problem is, I think I'd feel this way no matter what DMT I chose. My biggest fear is that my throat swells and I can't breathe. Panic mode. Any words of advice?
Don't panic. It won't help anything. In fact, you should be trying to reduce the stress level in your life. Lifestyle changes can help. There are many things you can do to improve your quality of life with this disease.
As far as the side effects are concerned, yeah they are awful, but they are also rare. If they were not rare, the medication would not be available for use. It's sensible to know what to watch for and to watch for it, but worrying will not help you at all.
Breathe... Although we can’t provide medical advice, I can tell you that most infusion centers are pretty knowledgeable and know the proper protocols to follow. They will pre-medicate you to try to avoid significant reactions and monitor you pretty closely the first two doses. They can also slow the rate of the drip if you have any issues. My daughter has had four infusions and has tolerated them very well. Don’t be afraid to ask questions and speak up if something doesn’t feel right. Good luck!!
So you've got 2 good pieces of advice: Breathe, and don't panic. They're right, neither will do any good. :) And I'm all about doing good with MS and trying to lower odds for bad things happening.
The 19th? I go in tomorrow the 18th for my 4th Ocrevus infusion. If it's any consolation, statistically the side effects are rare; Ocrevus has a good track record that way. In the year I've been on it nothing has revealed to suggest the initial studies to get FDA approval are way off. (If I'm wrong someone correct me.)
As for advice: Ask your neuro to give you some steroids and benedryl in the IV (most do). I always enjoy the energy boost from the steroids.
Don't be terrified, just pray. When i was first diagnosed, i was afraid but all at the same time i was still able to do what i wanted to do. As time went on, it got worse for me, it turned into primary progressive. Now im on Ocrevus, i call it "Okra" lol you can call it whatever you went. Have fun with it & take it with generosity because everyone cant receive Ocrevus. Everybody isnt that blessed to receive it.
As an update type of thing: My infusion was long, boring (got a few chapters read on the "Plant Paradox
" book I've been working on; that book claims many auto-immune diseases are gut-related and can be addressed via diet) and, most importantly, uneventful.
So now, a couple of days after your infusion, you've hopefully had time wrap your head around the procedure.
I have an MS friend that has been on Ocrevus for years (was on a trial before it was FDA approved) and she gets every side effect in the book. Each and every infusion is an "adventure" for her. :( Fortunately I'm on the opposite end of the spectrum (where most people are).
Any thoughts or summary of your experience?
Thank you for both responses! I was actually going to reply back yesterday but I seem to forget things these days. That was one of my first symptoms, actually. I'm glad that your infusion went well! Mine, was actually alot like yours. The worst part for me was the benadryl. The first nurse pushed it too fast and felt like I was going to pass out. I got about half way through my infusion when I had a slightly itchy throat, they cut the rate in half, added another 25mg of benadryl, and it was fine. It was boring and I was tired by the end of it. Yesterday, I felt pretty "normal" (my new normal, now) but still did too much and was just dead tired by the end of the day. So far, so good. Hopefully they continue to go like this!
It's really not worth losing sleep over and wasting time worrying. All the drug therapies that we are using to slow the progression of our MS have side effects. I read that Ocrevus is supposed to be the best for now. I have seen several people receiving it recently. How did your appointment go for your first Ocrevus on Friday, the 19th> Please let us know
Sorry for the late response. I wanted to give a full "report" on my experiences.
1st Infusion Day - Went to the room, got my vitals and ordinary MS checks (squeezing/pushing/pulling of the nurses hands, check eyes, etc.), was given 2 tylenol to take first, IV inserted, a small amount of steroids (solu-medrol...YUCK) into the IV line, a small amount of benadryl into the IV line, and then the Ocrevus/IV solution started to drip. It starts of fairly slow and they ramp it up every 30 minutes. About half way through, I started to feel a dry/itchy scratching in my throat that was giving me a slight cough. So, they cut the drip back in half, gave me more benadryl, then everything was good so they picked up where we left off. After the Ocrevus is gone, they keep the IV in with the solution still going and "monitor" you for an hour to check vitals and for reactions. I left the clinic feeling cranky and tired from not being able to sleep due to the nurse coming in every half hour to take vitals and turn the Ocrevus up, but all in all, nothing extraordinary happened. I was there for a total of 6 hours.
Day After - Felt surprisingly well. Don't let it fool you, though. I thought everything was normal so we went to the "big city" (Columbus) to do some shopping. I was doing great one minute, then the next I felt like I caught a case of narcolepsy and just wanted to sleep. So, I went home and slept. Lol.
2-5 Days After - I started feel like I was getting a cold. Had a slightly stuffy nose and headache. Felt like doody for these days. But then, went back to normal.
I just had my second infusion on May 3rd. Went even better than the first. No reactions and was able to leave in 5 hours total.
My advice: Bring snacks and something to do. They had a TV in my room, but that does get boring after a while. The second time I brought a coloring book. Lol. I totally recommend Ocrevus, so far. :)