Lemtrada Journey – Round 1 Day 1: Hurry up and wait. 

Today was the day I began the Lemtrada journey. Lemtrada is a treatment for MS that basically retrains the immune system so it doesn’t attack the coverings of the nerves in the body. This means that it is supposed to stop further disease progression. This is a good thing. It is given by infusion for 5 days at the beginning and then turn get no more until one year later when you get round 2. You only get infusions for 3 days that time around. 

From things that I’ve read, it’s a pretty intense journey to take. More so than Tysabri which I am not taking any longer. I had my last infusion of Tysabri on the 7th of this month. I just want to take this time to say that I really enjoyed my time spent at the Allison Cancer Center in Midland. I made some new friends while there. The nurses and my doctor are awesome and genuinely care for you. You don’t get that connection every where. 

Ok, now on to today. I was scheduled to be at my doctors office, which happens to be where the give the infusion, just some time before 9am. My wife and I showed up about 20 minutes early. They notified the nurse that we were there and told to have a seat and we will be called back. We sat down for a couple minutes before the doctor came out and said that I was going to have to go downstairs to the main hospital to get my blood drawn again. Apparently my white blood cell count was high from the last blood test about a week ago. She wanted to see if it was back to normal. We were again told to wait while she printed up the orders. 

While we waited, here comes a nurse named Vicki to speak to us about a study they are doing with Lemtrada. It’s not very involved. All we have to do is answer some questions each day of infusions and then again about 2 weeks after everything is done. I figured it wouldn’t hurt anything and might possibly help some other people in the long run so I signed the consent form and then she led me down to the lab to get blood drawn. 

I swear that lady that took my blood was a former spear fisher in a past life. Haha She went after that vein like it was going to run away!! Thankfully she got it in the first jab with no problem and was then led back up to the doctors office to wait for the results. My doctor was beginning to get a little worried that they weren’t going to get back in time. She said that if they weren’t back by 11:00 she would let us go and we would try again tomorrow. But right at the cut off time, they were back and we got started. 

They took us back to one of the exam rooms where we had the room all to ourselves. They said due to limited space in the infusion room and the fact that they knew my wife was coming with me, they put us in there so we could be comfortable. Have I mentioned how much I love my doctor there? She is also very caring and amazing. 

Anyways, they got me plugged into the iv machine and started the steroids. Those went in pretty quick followed by Benadryl. Which managed to knock me out!! Lol I slept for quite a while after she hooked up the Lemtrada and had that going in. We ate lunch and then both of us slept some more. My wife on the exam bed and me in the infusion recliner. 

That part of the infusion took about 4 hours to be completely infused. They then followed that up with hooking me up to saline to just get fluids in me. It was at this point that the iv needle said it was done and somehow got bent in a way that there was nothing getting into me via that way any more today. I was allowed to not get stuck again if only I promised to drink a certain amount of water before I left. Which I was more than willing to do just so I didn’t have to get stuck again. Lol 

We were able to leave the doctors office about 6:00 pm this evening just to go back tomorrow and do it again (hopefully without the blood work). So tomorrow shouldn’t be quite so long. 

As far as how I’m feeling after getting done with Day 1: I’m tired. I had a headache that went away with ibuprofen. And I was just feeling very stiff and achy all over. It wasn’t horrible. Just a dull ache that was helped by the ibuprofen also. She did give me a prescription for hydrocodone in case I started hurting pretty bad. I don’t see that it’s needed as of right now but it’s good to have it just in case. 

That sums up my day one. We ended the day with a trip to spaghetti warehouse and now climbing in bed to do it again tomorrow. Hope things will keep going pretty good. 

Thanks for reading while I ramble! 


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