It’s been a couple of weeks since I posted about my experience of Lemtrada Round 2 and now seemed like a good time to check in. Mostly because I’m sat in the doctors waiting room (again) with little else to do.
So last time I wrote, I ‘probably’ had cellulitis and the rash wasn’t abating. Since then I’ve had a course of penicillin which seems to have done the trick on the cellulitis.
Thing was, I was taking 25 tablets a day and quite frankly the thought of another tablet made me want to throw up. So despite the rash, I decided that just for a day I’d knock the anti-histamine and paracetamol on the head. As it turned out, the next day the rash did finally subside so I didn’t bother taking them anymore after that.
On Monday however, my itchy scalp (remember that from last year?) started, so I figured I’d just take another one of the anti-histamines that I was prescribed in hospital (chlorophenamine, which is basically piriton). Within minutes my skin flared up. I broke out in hives almost all over my body. The very same rash I’d had that I was trying to combat.
So the medication I’d been taking to beat the rash was giving it to me. Oh the irony.
Much to the amusement of many of my friends on Facebook, after a bit of googling for home remedies on Tuesday morning, I had a bath in porridge oats. It has anti-inflammatory properties and much to my surprise really helped. Once I was out I slathered myself in what was quite frankly an offensive amount of aloe vera gel and ended up spending the majority of the day sleeping.
By Wednesday, it hadn’t shifted. I popped into a local Pharmacy which suggested trying a different anti-histamine but nothing has changed. If anything it’s got worse.
Overnight has been horrendous. I’ve never sweat or itched more. It’s unbearable and I’ve now given up on waiting for it to ease on its own and am now sat waiting to see the doc.
Today has resulted in a full scale pity party. I feel terrible. I’m pissed off that I’ve got MS, I’m pissed off that I’ve had Lemtrada, I’m pissed off that I haven’t stopped feeling lousy for two weeks nearly now. I’m just pissed off.
So, since my last blog last Wednesday, what’s been going on? I was discharged from hospital by about 5pm. I felt pretty chirpy and just generally ok. Legs felt really whoozy though. If you remember, last year, I’d managed to get quite a bit of time off the ward so I’d managed to retain the use of my legs a lot more than this year.
I spent the majority of Thursday sleeping and just generally aching but for the most part I was ok. Friday was reasonably ok too – I even managed to go out for a couple of hours.
Saturday saw me at Poppy’s play date for a couple of hours, then sleeping the effort of that off all day. Same for Sunday, minus a playdate.
Sunday night, I headed back to mine and pretty much, all was about as I’d expected.
So far, my experience was mimicking what had happened last year for the most part.
But then Monday happened.
Following a terrible night sleep, I had to stay awake for my Tesco food shop to be delivered. Given the three hours sleep I’d had, this proved difficult. And the temperature really increased. When my shop did arrive, I was the hottest, sweatiest mess I’ve ever been!
The sheer effort of unloading my food shop made me want to throw up, and I found myself horizontal on the ice cold kitchen floor, desperately trying to feel cooler.
Monday night was another night with very little sleep (but that could have been because I stayed up reading a book).
Tuesday was a terrible day. I felt like I’d been hit by a bus. I barely moved all day but when I did I was seeing stars, dealing with waves of nausea and my heart rate spiking from taking three steps. I wasn’t good. I never felt this bad last year.
I was beginning to realise that perhaps I was lucky last year for Round 1 and how much it had affected me. I admitted defeat and got a taxi back to Dave’s. I couldn’t look after myself. Every effort to just made me feel worse, but I have to eat and stay hydrated.
I want to say that Wednesday was a better day. And in many ways, it was. I didn’t feel as sick or weak. But Dave spotted a patch on my arm that didn’t look like the rest of the Lemtrada rash that was slowly taking over my body. I usually like to give a visual representation but you definitely don’t need to see my rash. Think hives.
The short version is I ended up seeing a Doctor, not from my regular surgery as they close on a Wednesday afternoon (coz people don’t get sick on a Wednesday apparently). He said it looked like I had early onset of cellulitis around the site of my cannula. He prescribed me a course of penicillin to add to my already offensive list of medication.
Overnight, it definitely hasn’t got worse and it’s less red in colour now and more pink.
Today, I’ve just slept. Then woken up eaten and gone back to sleep. But I’ve got a confession. I have also had a proper wobbly today. A real “why me, why MS” angry strop. I cried my eyes out. I try and avoid doing this too often, because for me personally, it’s counter-productive, but some days putting on a so-called brave face just gets too much. And nobody would blame me for it.
I feel so weak for doing it though. I feel like I’m not living up to how people perceive that I’m coping. In life, it feels like crying is seen as weakness. But I truly believe that strength is not in your reaction, but how you recover. So it’s ok to cry and let it all out.
Or it could be the emotional rollercoaster of steroids and I had no control over it.
In short, whatever I thought I knew about going through Lemtrada has completely reversed. Last year I felt under the weather. This year I can barely move with every limb and joint aching. I have a horrendous rash, I’ve ended up with cellulitis and I can’t stop sweating.
However, if you’re reading this, waiting for Round 2 yourself, please don’t let this scare you. All this proves is that this is so different for everyone and there’s no way of predicting how this will go for you. And please remember. There’s a greater good behind all of this. It could be leading you to a day where you don’t even think about the fact that you have MS.
Woke up after a good night’s sleep and made myself feel a bit more human with a quick shower after breakfast. Feeling a lot better this morning, with the headache finally subsiding and feeling a lot cooler.
Got off to a good start, being hooked up nice and early by 10 o clock.
Infusion mostly all went without a hitch – just had a little doze when I was having the saline flush at the end but woke up back in sweat mode and the rash was starting to make a bit of an appearance. A dose of piriton later and that seems to have subsided but I still feel damn itchy!
So for the most part, it was an uneventful day. Kat (my person that keeps it real does my nails and gives me all the offensive jokes) came to visit me with supplies. Because quite frankly this hospital food ain’t cutting it, as a you can see below…
But Kat the hero arrived with pringles and lindor which made it all better!
So really not much to report apart from I’ve managed to watch an entire season of Friends and finish a book that I’ve been taking ages to get through.
In summary, day 2 went as well as it could do and we’ll keep on powering on for my last day on Wednesday!
Well yesterday, I was admitted to Salford Royal for day one of the second round of Lemtrada.
Once I’d managed to get on the ward which is a different one to last year and like Fort Knox, I was showed to my bed. Unlike last year, I’m on a general neurology ward, with a lot of long term patients. Dave was asked to leave until visiting hours at 2pm as it’s an all female ward and at that time of morning people are just getting up and being cleaned etc. So I was taken aback slightly as I thought I knew what to expect but that wasn’t meant to be!
If you’ve followed my whole Lemtrada journey so far, you may remember that last year I had no end of problems with my blood tests and cannula. My veins were pretty deep, the first attempt blew and I had a massive blood bruise on my arm, the first one that actually made it in wasn’t flushing properly. When my blood’s were taken the haemolised (clot) before they got to the lab for analysis so I needed more taken and I never actually ended up getting hooked up until about 5 ish.
Yesterday was far more successful. Alex was the man and got my cannula in first attempt and it’s in a really good, non-intrusive place too. It didn’t particularly hurt either so hopefully that fear is over!
Waiting for lunch I had a catch-up on Sunday night’s Love Island and did my old favourite habit of binge watching Friends, despite the fact I have loads of other stuff I need to watch!
After lunch I finally got hooked up at 2 ish. Dave re-visited and appeared with salt and vinegar pringles and chocolate, because this, is what lunch was:
Yes, you are looking at mash, carrots and a plain omlette. The veggie options here don’t leave much to be desired to say the VERY least. It went down, but only because I was so damn hungry!
The first part of the infusion was the steroids. I immediately reacted to this with a hint of a rash appearing along with a tight chest. That awful bitter taste like cheap bad tonic (the 39p stuff in plastic bottles!) re-appeared as if on cue within 10 minutes. Kat is a rockstar though and had bought me A LOT of mint tic tacs to take the edge off. Combined with the pringles it wasn’t so bad.
Like last year, I’m downing water like it’s going out of fashion, but my bladder fully behaved itself and my toilet trip count was down from last year’s 157 on day one to about 10 this year!
Once you get put onto the Lemtrada infusion they observe you like crazy to start off. For the first two hours they check your temperature, heart rate and blood pressure every 30 minutes. Then you have one an hour later, one two hours later and final one four hours later. Because of the time that my infusions started, my last observation was a late one at 22.45, which I was pretty incoherent for as I was so damn tired!
During my infusion I felt awful. Achey hips, blinding head ache, so so hot (unberably so) and just wanted to sleep. At best you can only doze as you’re constantly being checked on and you’d be surprised just how much is going on around you.
Dinner time came before my final infusion had finished…Dave was highly amused by “orange juice” starter. Can’t understand why. It was a massive treat after drinking so much water! And now ladies and gentleman, I present to you my main course…
Here, you are looking at saute potatoes, green peas and a cheesy pasty. Which doesn’t sound too bad, albeit a bit yellow. But the pasty wasn’t Carr’s or Galloway’s and quite frankly did not cut the mustard for this plastic Northerner!
Infusion finally finished about 8.30 and the relief to be detached from Bleepy McBleeperson was huge. A couple of hours after, I finally cooled down, my headache alleviated and I managed to have a snooze. I obviously woke up in time for Love Island and my favourite meal of the hospital day – TEA AND TOAST!!!
Final observations for the day all turned out good (apart from my blood sugar, but I’m pretty sure that was the fault of the orange juice and tic tacs!)
My lovely Reiki friends sent me some healing throughout the day which I’m so so grateful for, and I finished off my day by “reiki-ing”myself to sleep.
I had a pretty good night and have woken up feeling pretty good this morning.