#schuplindoeslemtrada

[horriblehousewife]

I have been so overwhelmed with my post round 2 recovery. The fatigue. My poor walking. ALL OF THE APPOINTMENTS. It's draining. 😥 🎶Just keep swimming swimming swimming, What do we do we swim swim swim.🎶 #schuplindoeslemtrada #multiplesclerosis

[horriblehousewife]

I didn't hit the proverbial 'wall' until 19 days post round 2 but I hit it good and hard. Got a 🥄 to spare? Ha! My 2 weeks post video is up if you're interested. It's been up 1 month but who's counting. 😂 #multiplesclerosis #schuplindoeslemtrada

[horriblehousewife]

*NEW VIDEO IS UP!* A blood draw checking for anemia (I'm not anemic) is how I learned about Lemtrada's new side effect- 5.10 in the online prescribing guide. My panties were/are bunched because I felt like they could have communicated it a lot better so current patients would know. They sent me SO MANY mailings before round 2 (11/1-11/3/17) you'd think one of those would have had an updated prescribing guide. ¯\_(ツ)_/¯ I wonder if they'll add the liver panel to our monthly draws? From their site: Acute acalculous cholecystitis (AAC): LEMTRADA may increase the risk of AAC, which occurred in 0.2% of LEMTRADA-treated MS patients compared to 0% of patients treated with interferon beta-1a. Post-marketing cases of AAC have also been reported. Time to onset of symptoms ranged from less than 24 hours to 2 months after LEMTRADA infusion. Typical risk or predisposing factors such as concurrent critical illness were often not reported. AAC is associated with high morbidity and mortality if not diagnosed early and treated. If AAC is suspected, evaluate and treat promptly. #schuplindoeslemtrada #multiplesclerosis

[horriblehousewife]

I decided to do more of a vlog style summary of my second round to give everyone a better idea of what goes on during the treatment. I thought it would be a bit more interesting than a basic summary of it all. Round 2, day 1 is live on my YouTube channel. Now excuse me while I go back to sleep. Ha! #schuplindoeslemtrada #multiplesclerosis

[horriblehousewife]

I woke up at 344am in excruciating pain because I was touching the bed. Breathing hurt. Moving hurt. Anything touching my body hurt.  I took a Trazodone to help me fall back asleep and a Tylenol 3 to take the edge off. I was able to sleep again but now I'm awake and very much aware of the pain. One day at a time... #schuplindoeslemtrada #multiplesclerosis

[horriblehousewife]

Yesterday (round 2, day 3) was a lot of the same. The chest pain from the muscle spasms was so intense- like labor pains in my rib cage. Absolutely miserable but Norflex via IV starts working in no time. Right before we called it a day, I was unsure if the spasms had spread up my chest or if it was now a heart thing, so they gave me another Valium and told me to hangout for 30 minutes. The  combination of Baclofen, Norflex and Valium worked a bit and I was able to go home since it wasn't a heart thing. I'm staying at my mom's for the weekend so I can rest, drink buckets of water, and rest some more. And for whatever reason my blood pressure is low (95/67) again this year, so I'm relieved that I'm not responsible for my tiny humans. I'm really run down but I handled 3 days WAY better than the 5 days during round 1. Now to rebuild my immune system, not relapse, and avoid cancer and other secondary auto immune disorders. No big deal. Ha! From 'wake me when it's Friday' to 'it's time to start living'. Everything will be a-ok because I have fantastic people in my life. <3 #schuplindoeslemtrada #multiplesclerosis (at Michigan Institute for Neurological Disorders)

[horriblehousewife]

Yesterday (round 2, day 2) was many moons easier than day 1. I came in with an infusion headache but I'm no stranger to that feeling so I pushed through it. My chest was still acting a fool but it was only a 2 so I pushed through it.  One stick and the nurse was able to place the needle in my hand no problemo. The biggest disappointment of the day was probably when a few chatty patients came in for steroids and Tysabri and woke me from my Benadryl induced slumber. Jerks. :) Kidding. It was definitely the chest pains later in the day. They gave me Norflex again and the pain dropped back to my normal pain level of 2. And I was POOPED when I got home. Let. Me. Tell. You! The tiny ninjas must be doing their jobs because I was ready for bed as soon as I got home. #schuplindoeslemtrada #multiplesclerosis (at Michigan Institute for Neurological Disorders)

[horriblehousewife]

Yesterday (round 2, day 1) was interesting but not in a scary, leave in an ambulance kind of way. It took 2 nurses 4 sticks to get a decent IV in and it still didn't play well with others. There was a lot of pulling the tape off, moving the catheter in and out, and checking all of the connections to see where the obstruction was occurring. And at the end of the day, it fell out, getting blood everywhere, so it was truly not meant to be. I ended up with and an ice pick to my dome headache, so they pushed Toradol through my IV. And with about 1 hour left of my observation, I had miserable muscle spasms in my chest AKA a 'hug'. They tried 5mg of Valium with no luck, so they pushed Norflex in my IV. It took a good 30 minutes but the boa constrictor finally released it's hold a bit and my heart rate came back down to a resting 110bpm. All things considered, it was a good Lemtrada day. The steroids didn't even leave a gross taste in my mouth or keep me up all night, but that didn't stop me from plowing through a decent amount of candy. No shame. 😄 Two more days to go! #schuplindoeslemtrada #multiplesclerosis (at Michigan Institute for Neurological Disorders)