#multiple sclerosis life
-Alemtuzumab year 2
This year has definitely been easier than last year was! My younger sister came to stay for a week and helped me with everything which did make life that little bit easier. She did the same last year too; what a star! Thanks Flea!! Don’t get me wrong, I’m super tired and could really do with doing very little for a while (or my sister back? haha) but I’ve been back at work for a week now and it didn’t kill me!
I have had a lot of tingling in my limbs (a.k.a. altered sensation), not something I’m that used to, and headaches on and off…but apart from that & a couple of little blips, it’s been ok.
All I have to do now is avoid catching anything and I’ll be happy!
– Days 1, 2 & 3
Here’s a quick update to changes to the treatment plan for this year:
1) The ‘anti-listeria’ diet we are asked to follow has been extended to a month before the treatment starts. We had of course been told this prior to this meeting, but she explained that it was because there had been a death caused by listeria in a patient receiving Alemtuzumab. (Thank goodness I’d followed the instructions, hey!)
2) We would be taking a second tablet (in addition to the acyclovir) home with us this year; it’s an antibiotic called Co-Trimoxazole (2x480mg a day for 30 days, each containing: 80mg Trimethoprim & 400mg Sulfamethoxazole), which has been shown to decrease the risk of getting ill whilst our immune systems are very low.
So, for the second round of Alemtuzumab I had 3 days of treatment. I’m not entirely certain why it’s shorter than the first year, but I do know that this is the standard protocol. This year wasn’t very different from last year except, I suppose, that it was a little easier. I’m not sure if that was because I knew what to expect, or that fewer days meant that my body felt less bombarded (or maybe a bit of both?), but either way, I was glad for it!
(This is Morriston the sloth (named after the hospital that my neuro team are based in) sitting in the chair that was my home for the three days of my treatment this year.)
Day one
We started today with some introductions: Mark & I had a new buddy this year called Jenny (also in her 2nd year) and we all met the new neurologist that has been added to our neuro team; both were great. We then each had a little consultation with said neuro who just went through a few things and did a quick series of tests. All we had to do then was wait for the results of our urine tests, take an antiviral & antihistamine, to be cannulated and we were good to go.
There was around an hour of steroids and then 4ish hours of the Alemtuzumab, followed by 2 hours of observation and a blood test. We had half-hourly obs all day and we mainly looked after by 2 nurses. The unit we were in was being shared with the renal department so there was a steady stream of their patients coming in and out for various treatments all day.
I spent this day in quite a lot of discomfort but I knew it was to be expected. The nurses gave me some paracetamol and said that it was good because it meant it was working. At the time all I wanted to do was cry, but looking back on it that was the worst part of the treatment this year and it really wasn’t that bad.
Mum & I stayed in a hotel again as it was much easier and safer to be near the hospital. I was pretty tired after the first day but when trying to sleep I became VERY restless.
(Cannula number 1)
Day two
I had kept the cannula in from the day before so today started a lot faster than the first. All I had to do was wait for my urine test to show all clear and for the blood results from day one to confirm that the treatment had done what it was meant to do. Both were fine, so, after taking an antiviral and antihistamine again, off we went. I had a headache this day and was quite sleepy, but that was pretty much it.
(Half of the obs sheet from day 2)
Day three
I’d kept the cannula in again for this day but about 30 minutes into the steroids it had to be taken out and replaced on the other side. It was a little painful and the infusion seemed to be going quite slowly so it was decided that it was best to change it. Turned out that was a good idea as when it came out the tube was so bent they didn’t even know how it had been going through in the first place (haha). Apart from that the same morning routine from the day before was followed. I was a little flushed this day and had a bit of a temperature but they both went down by the end of the day. I was a lot more tired so spent a lot of the day in and out of sleeping. I did get a small rash, but NOTHING compared to the one I got last year!
So, that was Round 2…hopefully my last! I have a check-up appointment with one of my neurologists in a month and will have an MRI in June(ish) and then we’ll go from there. Keep your fingers crossed for me!
I just wanted to add a quick thank you to my Mum, sisters and friends that looked after me and messaged me throughout these 3 days! Oh, and the awesome neuro team at Morriston (thank goodness for the NHS!!)!
I haven’t had to update this in a while, which has been good, in this case no news really has been good(ish) news.
So what’s happened since last April? To sum up:
> I caught so many bugs it was unbelievable, but none of them caused any hospital visits and as my immune system regained its strength I did stop catching everything.
> I have Trigeminal Neuralgia & take Carbamazapine to stop it from causing me pain, which coincidentally has also seemed to help my back problems.
> I still have to use crutches every so often, but much less than I was starting to use them.
> I’ve had 3 mysterious skin allergic reactions (as shown in previous post), around 10 issues with my eye - itching/pain - that was stopped by piriton - & now have very dry skin/eczema on my eyelids (Aveeno cream clears it up within 24 each time). The GP I saw has suggested that this is all an allergic reaction to the TN meds, but the TN is definitely still worse than all of that. I’m yet to see if my neuro agrees…
> I had a 2 week spell of headaches behind the eyes couple with some mild vertigo recently, but optician couldn’t find an issue, neither could the GP. Again, yet to really bring it up with anyone on the MS team.
> Fatigue, stiffness and memory issues are unfortunately still ever present, but I think they might be something that stick with me for ever to be honest.
> There have (of course) been other issues here & there, but right now none spring to mind…
