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Tuesday, 3 November 2015

My Lemtrada (Alemtuzumab) Infusions Experience

I survived!

In fact, by all accounts, I had a dream run, just two minor incidents, one was expected. I was bored, I was tired but I didn't seem to be having any ill effects from the Lemtrada and cocktail of other drugs that were taken as part of this treatment.

There was a fair bit to take in as I was staying in the Austin Hospital "Medi-Hotel", so I had a lot of info floating around in the old noggin. The first day the lovely receptionist walked me over to "Ambulatory Care" where they do all manner of infusions and treatments, there's about three areas where various infusions and treatments are administered. I was the only person doing the Lemtrada treatment that week (five days). It was great being at the Hospital, but not being admitted to a ward etc. so I got to go back to my room and chill. Meals were supplied and the staff were very helpful.

The First Day started off with having the cannula inserted, taking the oral pre medications, then the methyl pred intravenously, there are also saline flush outs between intravenous meds, so most of the time you're just being pumped with various fluids, sitting there twiddling your thumbs lol. The first day of infusion, just had one minor incident, I got the chills, I was shivering/shaking uncontrollably, it was a small event, only lasted about 5 minutes, the rest of the day/infusion was fine.

First Day Cannula Inserted

Everyday, before I wandered over to Ambulatory Care, I would take the Pre Medications, three main Oral Pills, plus Panadol for headaches every four hours and Temazepam to sleep, Intravenous Phenergen seemed to help on the last infusion day, I had woken with what felt like a decent dose of the flu, headaches, sore muscles and joints etc., simply it was like I had the flu, it was a slow walk over to Ambulatory Care on my last infusion day...

Loratidine (Claratyne)
Ranitidine (Zantac)
Valaciclovir (Valtrex)

Also take 
Panadol (headaches etc.)
Temazepam (sleeping pill)

Last day heebie geebies

The Second Day was easier, didn't need to mess with a new cannula, bonus, the infusion was uneventful, no adverse effects to report, it all went infusion experience was fairly boring, which I'm quite happy about lol.

Ian My Best Friend for Five Days
The Infusion machine above didn't leave my side for about eight hours a day for five days, I miss him, I called him Ian, he controlled my life, he told the nurses when to change bags, when to do their Observations, blood pressure, temperature and general check over, the checks were quite frequent, three cheers for Ian the Infusion Machine ;)

The Third Day was the last day of the pre Methyl Pred infusion before hooking up the Lemtrada. Once again the third day seemed to go fine, feeling a bit rundown, but nothing adverse happening as far as problems with the drugs etc.

Partial View from my Infusion seat
I did at least have a decent view while twiddling my thumbs, yeah I did read a few chapters of a book on my tablet, I played a few games, but honestly, I spent a lot of time looking out the windows watching the world go by, I made sure I got "my seat" everyday, I just got there early on time lol!

The Fourth Day they changed from Methylprednisolone infusion bag to Hydrocortisone from a syringe injected into the line, so my day gets a little shorter by an hour, YIPPEEE! No problems recorded or inkling tomorrow would be the worst day... Oh and had Cannula inserted into another vein, standard practice apparently, change cannula after three days

Lemtrada is light sensitive, so they cover the actual infusion bag with a Black cover
The Lemtrada drug is light sensitive so they cover the infusion bag with a black cover to keep the light out, can't watch the fluid disappearing damn it lol.

The Fifth and Final Day was the worst day of the lot for me, apparently this shitty feeling can happen on the fourth day to some people as well, maybe the lack of Methyl Pred has something to do with it, but on the last day, I felt absolutely crap, like I had the flu, so of course it aint all that bad but I think the lack of sleep doesn't help, you really are drained by the end of the week. I had a headache, flushing, some itchiness, sore muscles and joints, yep it was like Influenza, the pre meds helped alleviate the effects. I didn't feel like sitting there all day feeling the way I did, one of the Neurologists dropped into see how I was going and suggested some Phenergen to take the edge off, I was on board with that idea, after the Phenergen, nothing worried me lol.

I'm fairly sure the seat I'm sitting on here now has my arse imprinted forever...
It seems I was quite lucky, so far at least, with the Lemtrada Infusions, one nurse said your course of infusions has been one of the most uneventful out of the ones the have done, whew, everything went smoothly, no reactions to the drugs, the worst of the whole process was the utter boredom. So I'm taking it pretty easy this week especially, I'll stay close to home :)

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