Steroids

Through all my infusions of Lemtrada I was fed steroids. I admit that my limited knowledge of steroids is just what I had learned from the locker room of the gym I occasioned as a teenaged man in my hometown. If I wanted to get big muscles, I had to talk to the sketchy who is always hanging out in the locker room.

Rumour had it that if a person took lots of steroids and worked out, he would get unusually big. But the odd downside is that your male libido shrunk. Along with that the testicles and manhood shrunk. Frequent use also came with a high dose of unmanageable temper.

I also understood that the sketchy guy’s steroids were from an impure source (likely means that the source isn’t FDA approved). Not to mention the legality of those steroids.

I stayed away from steroids as I had no use of those side effects, or any brushes with the law.

So, at my first infusion I’m told by the clinic nurse that the first three days will be immediately preceded by an infusion of steroids before the Lemtrada. I’m told the steroid use will help me get through the week. From the beginning I had no idea what to expect so I readily agreed that it sounds like a great idea. After the first three days I was ready to conquer the world. 

I felt great. I felt as if MS was a thing of the past. MS conquered by steroids. I asked the clinic nurse after day three why there are no steroids on the last two days. I also mentioned that perhaps the benefits I felt could be extended with more steroids. 

I was told too much steroid use has severe side effects. My brain referred to the sketchy gym guy of my youth.

I vividly remember the end of day five of the infusion brought incredible weakness and mind numbingly exhaustion. I couldn’t get out of bed for days after I arrived home from the clinic.

The second round of Lemtrada was three days of infusion all preceded by steroids. That was on a Monday to Wednesday. By Friday I could not get out of bed because of the deep exhaustion. Round three replicated round two.

I was of the mind that Lemtrada, a very powerful drug, was responsible for the sickly feeling after each round. 

Then came my platelet issue. A low platelet count is a known, and common side affect of Lemtrada. It is easily resolved by giving a short blast of steroids. Through my dealings with doctors who worked with me in the emergency room, steroids is always the go-to when dealing with low platelet counts, no matter the cause.

I had three instances of low platelet counts. Each time, I was given steroids. Each time was followed by deep exhaustion, incredible weakness, and if I didn’t mention it already, deep exhaustion.

The exhaustion made it difficult to get from my bed to the bathroom. I had to get a proper pee bucket. I’m a proud person and this stripped me of all dignity. Each time I thought it would never end.

I’ve been told that when the body is no longer receiving steroids it will go into withdrawal. The withdrawal is very similar to a person quitting crack cocaine cold turkey.

Given my experience with steroids post Lemtrada, it makes me certain that Lemtrada alone did not cause my post infusion mind-numbing woes. I know steroids and its use with Lemtrada is part of the protocol, but it makes me wonder if there is a way for future users to forego steroids to have a more positive experience. 

Because of this experience I told my neurologist that, if needed, I will not do a fourth and final round of Lemtrada.

However, the reasoning for the third round was due to new lesions discovered during an MRI. New lesions means the illness is still active within my body. I don’t want that. The reason I signed up for Lemtrada is to halt the disease. 

So, I’ve since changed my mind and fortunately I’ve had no new lesions. 

Did Lemtrada work for me?

I think it did, but please, no more steroids.

This blog is a recollection and notes on current state of affairs with my fight with Multiple Sclerosis (MS). I have written this as a series that follows my timeline starting from day one. Please follow this link https://colinbrandtmsjourney.comto my website to view my writings and photography.