Lemtrada - Alemtuzumab Second Course of Infusions

I did my monthly Lemtrada blood and urine test yesterday and I just got the text to advise me
"all is well", this was my tenth month of blood monitoring since my first set of infusions, from memory I've had two "please check with your Neuro" texts, they ended up being some blood in my urine...so nothing serious and no further action taken. I must admit though that getting the "all clear" text does make me feel a little happier each month lol.

Even though the second course of infusions won't happen for about another two months, I am thinking about the risks and possible issues that can occur, no doubt this will be on my mind until the second set of infusions are finished. Luckily the second set is only three days as opposed to five days with the first set of infusions. I guess that also means I will have steroids for the three days as well, the steroids do seem to lessen the infusion side effects although sleep patterns aren't the most restful when on the roids.

I'll be staying at the medi-hotel at the Austin Hospital, each morning it's just a short walk to the infusion room and then eight hours of boredom while Alemtuzumab and various other chemicals are pumped into my vein, yes eight hours of extreme boredom, it's probably the thing I despise most, the boredom! Hopefully, because it's only three days of infusions, the cannula can stay in for the full three days without a change, if I'm lucky...yes I like everything to go smoothly lol.

The one good thing is that at least it's not a new experience like it was last year, I at least know how it all works and what happens with this procedure, so that's a bonus. I must say that the first set of infusions went very smoothly, I had a million questions for the poor nurse who was organising it all for me, so the questions should lessen a little. I still don't know the exact date that this second set of Lemtrada infusions will take place, but it should be around the end of October.

I won't be as nervous as I was the first time, but things can and do go wrong, so I'll read through all the possible issues again and be as prepared as I can be for whatever eventuates ;)

Lemtrada Second Infusions Two Week Update

Ok I'm a couple of days shy of two weeks, let's continue, the second course of Lemtrada Infusions went well, with no noticeable reactions or side effects, I'm thankful..., still it's early days after the infusions. Some of the side effects can show up months later.

I've been taking it easy and taking my pre-meds, post-meds that I need to take, I'm down to one a day until the end of the month

Lemtrada - One Month After Infusions

Well, it's about one month anyway, I had an appointment to visit my Neurologist and Nurse yesterday, it was the follow up Lemtrada visit, they had the results of the first blood and urine test I had for the Lemtrada monitoring. There is an app for Lemtrada monitoring which texts you the results so I already knew all was fine, though it's always nice to hear it confirmed by a human... I also had a chat to the main nurse I've been seeing, Belinda has been great putting up with my incessant questions lol. There has been a lot to take in since I started my Lemtrada infusions journey. She organised everything from start to finish!

I also got enrolled in some research they are doing on Lemtrada recipients, I guess it's just an extra function to monitor Lemtradians. The side effects of Lemtrada can "come on" years later like up to at least three years later, that's why there are monthly blood and urine tests for four years after the initial infusions.

Ok, so has anything changed after the first round of Lemtrada (alemtuzumab) infusions?

Everything I say below are just what I'm feeling and noticing, it's not based on science or medicine, it's just what I feel and think.

Fatigue since Lemtrada

I may have a little more energy, though it manifests itself by allowing me to push through the afternoon MS crash, I would normally need to have my afternoon "nanna nap" now I seem to be able to hurdle that barrier so I can stay awake until a reasonable "proper time to go to bed instead of the Vampire hours I would often keep...

Walking since Lemtrada

I don't hink there has been any change to my walking, I still have good days and bad days, somedays it seems that I can walk quite normally, the next, walking is a bit of a struggle, the morning when I first wake up is the worst... So overall the walking mobility hasn't changed much at all, of course being able to handle the fatigue a little better can help with one's walking.

Fogginess in Left Eye since Lemtrada

My left eye was left with a foggy outlook after a bout of Optic Neuritis, it affected both eyes though lasting damage only occurred with the left eye, the right eye pretty much recovered fully, whew! The fog on my left eye was like pea soup when it first happened, then there was some slightly less foggy gaps in my outlook, if I moved my eyes or head around it was a little clearer in the gaps. Now it seems that the gaps have pretty much disappeared and the fog is more uniformed and just a little less foggy overall, I think!

Numbness in Hands since Lemtrada

Both of my hands have been somewhat "numb" since my very first exacerbation many years ago, they still are a little numb, though I think there has been some improvement in "feeling" or "touch". The numbness in my hands feels like it might have decreased a little, I'll keep an eye on things and see if there is any long lasting improvement...

There have been nothing negative so far from side effects etc. let's hope it stays that way lol!

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
Phenergen

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 smoothly...my 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 :)

Aubagio Washout prior to Lemtrada Infusion

This won't be a large post, just wanted to add the picture of the washout drug I need to take before I have the Lemtrada infusion, wow there are quite a few sachet's I need to consume lol. This "washout" is to get rid of any trace of the Aubagio Oral medication from my system. I have been taking Aubagio for about three to four years from memory. I need to take two sachets twice a day after food and separate dose by two hours of other medication if possible. This should be interesting...

Picture of Washout Medication

Yep the picture is not all that clear, probably from the very slight shaking of my MS hands lol. I've also organised with the Pharmacist to save me a Fluvax as he only had two left, we're at the arse end of the Flu season I guess and he won't be getting any more this year anyway or so he said, the Fluvax and Pneumovax are injected after the washout.

Lemtrada Infusions for Multiple Sclerosis

I'm no doubt "jumping the gun" a little, but as I did with my Teriflunomide (Aubagio) drug trial posts, I'll start blogging my Lemtrada infusion experiences and the whole lead up to the actual infusion. The discussions I had with my Neurologist and the lovely Belinda, one of the great nurses in the Austin Hospital NCRESS team were quite informative and of course I had heaps of questions as well, as I always do. Lemtrada (alemtuzumab) is a newish drug used for the treatment of Relapsing Remitting Multiple Sclerosis (RRMS), like most drugs these days it's also used for other disease treatments. I'll start with a bit of information about Lemtrada first off.




Genzyme's - Lemtrada Home Page
Lemtrada main home page

Alemtuzumab on Wikipedia
Alemtuzumab Page on Wikipedia

Lemtrada Efficacy
New study supports the long-term efficacy of Lemtrada

The first Lemtrada Personal Blog I found

USA Lemtrada Blog

It's interesting to note from the link above on efficacy

"By following up these patients over time, the authors reported that 60% of patients receiving Lemtrada showed an overall stabilisation of their illness following treatment. This included 49% of patients who showed overall reductions in disability levels compared to their baseline level. An additional 10% of patients had their illness stabilised and showed no further change in disability levels after treatment. In general, higher relapse rates at the beginning of the study were associated with poorer long-term disability outcomes."

When you read about the side effects of Lemtrada on face value you  might think "no way would I agree to have this drug administered to me" but I'm the youngest in my family, I am single and live alone, so I really need to think about the future if my MS progresses, I don't have any family close by and as I don't live with anyone else, it's best I give myself the best chance at independence for as long as I can, something I've already somewhat lost to Multiple Sclerosis, I can still walk albeit with a slight limp, I can still look after myself, I don't want that to change in  the future, so I'm going to take the risk...and it is indeed a risk, but eh, so is crossing the road. Ninety nine percent of the MS medications have a possibility of some nasty side effects lol, so I'm happy to see how Lemtrada performs for me!

The early happenings in the lead up to the infusion
Flu Vaccine
Pneumococcal vaccine

The vaccine injections will take place after the Aubagio "washout", which is meant to be just so wonderful, it should be quite the shitty experience apparently...

There will be drugs that you have to take as well on top of the actual infusion drug, which I'll add later, because well I'm not exactly sure what they are right now lol.

I have to watch what I eat, I need to be careful of contracting Listeria, damn I'm going to have to wash my hands more regularly lol,..there are quite a few things I will need to be careful with, they gave me quite a bit of literature on Lemtrada and the side effects and what you need to be careful with.

I posted this in the first Lemtrada post but will do so here as well

LEMTRADA can cause serious side effects including autoimmune conditions and serious infections.

• Thyroid disorders
• A condition called Immune Thrombocytopenic Purpura [ITP]
• Certain types of kidney diseases

I'll publish this now, I'll no doubt add a little more to this post, but it's late and I should be in bed...

Lemtrada Information Video

Image taken from a Lemtrada information pdf from the Australian MS Society

Lesion activity

I had my regular yearly Neurologist visit today, it was also a follow up to the recent MRI scan I did a couple of weeks ago, (or was it one week ago, eh, who cares), I've only been back home for a couple of hours. I was going to go through the visit to the Neuro step by step in order of events, but damn I've forgotten already lol.

Basically I recall sitting down going through the pleasantries that us humans go through, I've known my main Neurologist for about 6-7 years I guess, I did an "Interleukin" drug trial that lasted about two years. I also did the Teriflunomide (Aubagio) oral drug trial that lasted wow, so bloody long, three to four years all up from memory. So I guess we know each other rather well from a patient - Doctor (Neurologist) relationship as he was the main man in charge of those trials, of course with the system we have in Australia you get to talk to most of the available MS Neurologists at the hospital over time. Though you generally have a "main" neurologist. I have respect for Richard (Neurologist) he always answers my incessant questions about all things MS.

After the quick chat we got down to business about me and my MS (one of the few times these days I feel anything at all is actually all about me lol), we started with the most recent MRI scan, the Neuro pointed out that I had a new lesion. A lesion that appeared not to cause anything noticeable, I actually thought my MS symptoms had kind of plateaued, it's difficult to be a practiser of logic rather than emotion when you have MS, you have the pseudobullbar effect attacking you from all sides virtually with every thought you have, it can induce sadness or hilarity, it can reduce you to tears over the simplest negatives you come across or you can find yourself giggling at the most inappropriate things to giggle at, like a person who has a warped sense of humour often does.

So what does a new lesion actually mean to me in my case, one that doesn't seem to be affecting me with an obvious new symptom or an old symptom returning with a vengeance. It means that the drug I am currently taking, Aubagio, the oral drug I was part of the trial for, is no longer effective at doing what it's meant to do. Well now, that really is a bugger, isn't it, it means I need to look at something else to keep my Multiple Sclerosis at bay. The Neuro seemed to suggest the best way would be to go at it hard, in that, not just go to say Gilenya or Tecfidera, but hit the MS harder with something stronger, enter Lemtrada (alemtuzumab).

I will admit my ears did prick up when I first heard about Lemtrada, it sounded quite interesting from an efficacy perspective and the fact that it was two infusion courses over two years, the first course of Lemtrada is five infusions over five days, one a day, the second year it's three infusions over three days and if all goes well, that's it. Though I will need to have a blood test once a month for four years lol, it's a newish drug that can have some nasty side effects, so the blood tests monitor what's going on so they can take early action in treating the side effect.

I will leave it at that for now as I still have to go through the tests, I also need to get a flu injection, and some other injection, something about infection risks when on this drug, from well, other infections. I will though list the main three nasty possible side effects from the literature that I received. 

LEMTRADA can cause serious side effects including autoimmune conditions and serious infections.

• Thyroid disorders
• A condition called Immune Thrombocytopenic Purpura [ITP]
• Certain types of kidney diseases

I'll sign off with
Happy, happy, joy, joy!
Readers can decide how to take that lmao