Today I was admitted to Salford Royal to begin Lemtrada treatment.
For those that don’t know what Lemtrada is, or a quick reminder for others, it’s probably the best treatment available for people with relapsing remitting MS. It’s an infusion based treatment that you take over five days in Year One, and three days in Year Two. It wipes out your white blood cells, and therefore immune system and essentially acts as a “reboot”. The idea is that the new rebooted system doesn’t attack your nerves like the old one does. It’s not a cure, my existing symptoms won’t go but that’s ok, I’m lucky that most of them are just annoying rather than debilitating. But it should slow progression to more or less a halt if it works. Which there is a great chance it will.
I was at hospital this morning bright and early, 8 am. On a side note, that drive in wasn’t fun. I have never had a commute further than 6 miles ever! I admire anyone that can handle the rat race! Desperate for a wee, I found a toilet and relieved myself, before then being told that they needed a urine sample! Nothing like the pressure of needing to give a sample to give you stage fright, even with downing a litre of water! I couldn’t stop thinking of one of my favourite clips from Car Share throughout desperately trying to pee in a sample pot!
After that it was a swab up the nose for MRSA (nice!) and then a brief meeting with the MS Nurse and Doctor to have a chat about the procedure I’m going through and what to do if I have an infusion reaction (more on this in a bit!) The nurse on the ward came around and weighed me, took my blood pressure, heart rate and temperature.
Then the needle guy came round. He’s lovely but I don’t like his job much. His job is to take blood and stick cannula’s in you. He stuck the cannula in the back of my left hand which we managed with minimum fuss, mostly because I insisted that the lovely nurse, Adele, didn’t stop talking to me by way of distraction! On top of all of that, I was ordering my dinner (or lunch. For the curious, I had tomato soup to start, veg pie for the main and and fruit for dessert).
Then it was the waiting game for my bloods to come back. Then things went a bit Pete Tong. My bloods had haemolysed, which basically means that as it hadn’t been analysed quickly enough, it had clot and gone bad which meant that they couldn’t be used. Whilst this was happening (before I’d even had my dinner/lunch), I was putting in an order for tea!
Needle guy came back round and was greeted by a complete lack of enthusiasm on my part! He told me that he could just draw blood from my cannula. This was a result as even though the blood tests are the bit that I don’t mind, I still could do without it! He went to draw blood, but nothing happened! This was then met with the news that I’d now need a new cannula fitting as it wasn’t working. The old one was removed. Obviously at this point I decided to do all the bleeding!
Two more attempts at a new cannula were not fruitful and I’ve got a cracking bruise on my arm to show the damage. Ultimately, I have rubbish veins. They’re really deep and tough to get too, although once I get going I bleed for quite some time. New cannula attempted by needle girl and this time we were successful! Yay!
Dinner came along with a tense wait whilst more blood was analysed.
Yay, success! I was reassured that my Steroid infusion and Lemtrada would soon be ready (they have to prepare it in the lab once all your test have come back ok) and I would be up and running. Finally, at 4.30pm action started.
The first infusion was a 40 minute drip of Steroids. This all went swimmingly up until about 25 minutes in when my mouth started to have the weirdest taste. Many describe it as metallic but to me it was bitter, Like I was drinking a really bad (cheap) tonic water. This is the point where all the mints became the best thing I’ve ever eaten! Apart from that, I felt ok though. Immediately after, they started on the Lemtrada. This was a far slower and longer infusion than the steroids at around 3.5 hours.
That’s when the real infusion reactions started. I got reasonably lucky as the girl opposite me had a horrendous headache and felt really achey. She didn’t look great. I had this to look forward to – she was about 1.5 hours ahead of me, not having had the issue with her blood test results. Miraculously, I avoided any symptoms that made me feel unwell, but I did end up feeling so hot that it was like I was in Costa Del Sol, not Costa Del Salford! (Most people know that this is unheard of for me, I have a preference for feeling cold rather than hot!)
Fortunately, during the infusion I had a moveable drip which was incredibly useful as I’ve probably been for a wee about 176 times throughout today from all the water that I’ve been consuming (they recommend at least three litres in order to control your body temperature and to keep the headache at bay.)
On top of the infusion I’ve had 13 tablets today (and I’m now a pro at knocking 5 back at once!)
So apart from this morning’s excitement, the rest of today has been pretty boring!
I’ll write back tomorrow after my next infusion which should be around 12.30 ish 🙂