Happy Monday to everyone. I’m hoping the weekend was lovely for all. I was hit with some kind of stomach bug that disrupted my Saturday. That was the first time in a long time I felt those crippling stomach pains. Good to know I could still feel things in my belly. I must admit, sometimes I wonder since I never do. I mean I can stub my toe and go into a spasm that locks my legs up for a full 30 seconds before I can move. I can still feel every needle that punctures my skin. I can bang my head on a cabinet and see stars but I don’t normally feel much going on in my stomach region like cramps or gas. My stomach was the first area that actually went completely numb on me. I use to give myself most of my Betaseron shots there. I may not have felt it but I use to have red welts all over my stomach from those shots. It was the easiest and most pain-free place for me. However I obviously was having reaction sites with those welts but I never felt them so I didn’t care. They’d heal after I’d leave the area alone for a bit. That was my first 12 years of MS. I’m in year 23 and we are contemplating shots again.
I had a video conference with my doctor and we discussed Kesimpta instead of Rituxan.
Kesimpta (ofatumumab) is an antibody that targets the CD20 protein, found on the surface of certain types of immune cells called B-cells, that has been shown to reduce relapse rates and the risk of disability progression for people with multiple sclerosis(MS).
This is the same type of drug as both Rituxan and Ocrevus but it is taken once a month. Yes, you’d think the once every six months does sound better with Rituxan but here’s the difference. No more stress over the infusion. I mean, there was so much stress for me every time I had to get this infusion done. I never had an easy road getting my infusion. Other than the nurse, there wasn’t one thing I liked about it. It was always such an ordeal. The steroids alone made the infusion difficult. I hate steroids. They’ve worked for me for 18 x 23 years of multiple sclerosis, but I hate them. This new drug it’s just a shot. No preps, no steroids, no long infusions, just one shot and your done. The question being am I can get run down for a week after each one of these shots. Right now I’m down for a few weeks after the infusion. A time table that keeps seeming to get longer. If I am down for a week every single month that doesn’t work. A couple of weeks every six months I can deal with. So we’re will have to see.
We won’t start trying to get insurance approval until July. If you would believe Medicare approves infusions faster than they approve the shots. Thankfully my long long long long history with MS drugs will help the process move along because I have history with many medications. I could try it for six months and if I hate it I can go back to Rituxan.
I can’t believe I’ll be back to shots. I never thought I’d be here again. I switch so fast to the oral medication when it came out I didn’t even care if it was good for me. I remember telling my doctor I wanted to change and him saying should we discuss it?I said OK let’s talk about it. He talked about I don’t even know what and I asked are you done? He laughed, a rare thing from my neurologist. I said can we change now? I didn’t care. I was so finished with shots. I’m deathly afraid of needles Shows how far I’ve come.