Alt, Ctrl, Delete

I write this post after what I see as a defining time in my already multi-dimensional life. If you have read some of my posts you will know that I have had T1D for now 27 years however 3.5 years ago I was also diagnosed with another Chronic Auto Immune Disease - Multiple Sclerosis. Over the 3.5 years I had tried around the same amount of treatments. Now when I say treatments there is no cure and the use of the treatment is to slow down the time in between attacks. It was estimated that each of the treatments should take the attacks from happening every 6 months to 3 - 4 years apart. Unfortunately they only broadened the attacks to  happen every 12 months or so. Even though this was lengthening the time it still wasn't enough and the disease continued to be active with new lesions being picked up on the MRI's. Altered sensations also broadened from the left hand side of my face to the full left hand side of my body and a slight limp so with all these changes some tough decisions needed to be made.

The neurologist talked to me about a drug called Lemtrada and as usual knowing that they are the specialist I was open to thinking this was the next step that could work. I asked the questions like I usually do,
1- Will it have an effect on my T1D? The answer - It shouldn't but we haven't had anyone that has had both before. This was a shock to me and something that would play on my mind even up to this day.
2- What are the side effects? The answer was going to be long enough so they handed me the long list that I swear just had to cover all bases as I flicked through quickly and they ranged from a rash and fever all the way through to death and also everything in between.

They mentioned that there had been some good results in this drug with people with MS as the initial group had now been relapse free for 8-10 years and they have actually had their symptoms become better. Basically when caught early and treated with this drug (oh and minimizing contributing factors in life) the disease could almost me put to sleep. Basically there still is no cure however this was sounding good. As mine is still active there wasn't a second thought it had to be done.

So Lemtrada itself is an immune suppressant but what I didn't know is that it is actually a Chemo Therapy drug that is designed to target the immune system and kill off the white blood cells including the mutated cells that have been changed due to the MS. So as the title says it is like when you press Alt, Ctrl, Delete on your computer to give it a restart and reboot this is what I have done to my auto-immune system. This is a 2 year treatment but on the whole it could be a lot longer as I will be having monthly blood tests put in place to make sure we can watch for any possible side effects including kidney damage/disease. thyroid problems and a number of others that could come apparent any time after the initial dose.

I was told that the initial treatment will happen over a 5 day period where I will need to be given 3 days of IV steroids (Methylpred) and 5 days of the Lemtrada drug. This would be done as an outpatient in the Cancer Care Center. I specifically mention the Methylpred because this is the item that will have the biggest impact on my existing T1D. Steroids stop insulin from working within the body which means while on the steroids and for days to weeks after it is going to be a major roller-coaster trying to make sure my blood sugars are as they should be. What I wasn't prepard for was the fact that this steroid compared to Prednesalone activates almost instantly where as Preds ramps up at a slower rate so its not as much as a shock to the blood sugar. The first day of the infusions (which happened to be on my birthday) started with me making sure I drank a liter of water prior to the start. This helps with plump veins and also helps move the drug through the body. Anyway the steroids were started and within 20 minutes the roller-coaster had started with me watching the CGM show that I was rising and rising quickly; I increased my basal rate to 200% and through out the day had to give manual boluses to just try and keep it at an OK level. Unfortunately but understandable my levels stayed in the teens for the next 8 hours.

So from a T1D perspective the steroids were the only immediate effect however as this is a long term treatment fingers crossed it will stay that way.

The days continued with the same cocktail of drugs and I actually found it quite funny how when ever the nurses were dealing with the Chemo drug they needed to wear basically a hazard chemical suit and we sit there and pump that same drug directly through our body.

As the week continues tiredness takes hold, some heart burn, aches and pains, headaches, fevers and a rash begins. All treatable with antihistamine, panadol and some other minor drugs. This is actually a good thing as thankfully I was not allergic and also maintained drinking and resting as much as I could. This is no where near finished it is only the beginning however like pressing Alt, Ctrl, Delete you hope that when you restart the problem you were having is at least gone long enough to make a difference. I will continue to update how things move as it is interesting to get an understanding as to all effects.