Last week was a rough week work wise…gihmeh ah bligh for not posting.
Since my diagnosis 11 years ago, I’ve actually been on 5 disease modifying drugs and there was always one reason or other for changing. Last year in February my doctor suggested that I’d be a good candidate for a new one that actually had years of trials backing it. We discussed it; I said sure. I’ll post next about how Lemtrada works but for now, I’m just going to talk thru the process of getting it. I took my last gilenya pill at the end of February cuz he figured (he wasn’t completely sure at the time) that I’d need about a month drug free so I could start Lemtrada in April. It is an intravenously administered drug that is done over a period of 5 days. I gave my manager a heads up because I was thinking that I’d need to take leave cuz who knew how I’d react. I was ready…HAH!
Well…I had to be approved – so the insurance company had to be contacted and they would provide approval. Alright…couldn’t do anything but wait…every 2 weeks or so I’d get a call from my doctor’s office to report “nope. No approval yet” and then in July the call update was”okay, we are a go” By then I was in another position (I’d actually transitioned in May (and not by choice)) and the entire situation forced me to have the “MS Conversation” much sooner than I’d wanted. Luckily though, my new manager was understanding even with/in spite of all the uncertainty. Honestly, I don’t know whether or not anything was different (symptom/disease wise) for all those months, but I was ready to be on something again. I had to do preliminary blood work and I’d be on my way. Of course nothing is ever easy in my world. The results showed that I’d never had chickenpox and having chickenpox antibodies is a MUST before going forward. Ok. No problem…that y there’s a vaccine right? Right…but…after being vaccinated, the antibodies aren’t generated for 6 weeks so yeah, u guessed it – I had to wait another 6 weeks to begin the process. Did I mention that 2 of my aunts were coming from out of the country to be with me. It’s expensive enough buying a normel international ticket – leh we not get into when u hadda buy it last minute cuz we jes weren’t sure when this thing was actually going to happen. Finally, on Sept 14, I went in for my first infusion.
That first week consisted of me and Rhoms going into the MSCA by 6:30/7 am at which time I was hooked up and given IV steroids for an hour. When that was done the Lemtrada was hooked up at that took a loooooooong 4 hours to completely drain. After that, I was observed for an additional 2 hours. It was a complete work day.
- As a side note: the MSCA nurses’ process included inserting a new IV line daily – until they met me…heeheehee. After trying 3?(or 4) times that first day, they decided that maybe my line should stay in so that they wouldn’t have to fight (and put me through that) everyday.
The week actually went smoothly with no drama – it was just very long – but lemme tell you, boy was I happy that I’m no longer a hero and had the good sense to take an additional week off. I’ve had 3 days of IV steroids before and I’d never had any bad after effects but I guess 5 days was too much for my poor, lil body. Things started going downhill from Saturday evening and I didn’t feel like a normal human being again until Wednesday. I was sick, I was weak, I threw up a couple times…was an awful 4 days. I will be forever grateful to Rhoms and Aunty B for being here with me.
Good news/bad news…
- The good news is that I only had to experience that once
- The bad news is that my second dose of Lemtrada is coming up; most probably in October (this time tho it’s only 3 days…i’ll still take 2 weeks leave tho)
More good news…once I get my second dose – that’ll be it. Stay tuned for how it works…