So last night was the opposite from the first night. I fell asleep ok and then woke at 3am and it was roasting. So we have went from the heating not working to us being too hot.
I spoke to the nurse last night about getting my treatment sharp as the boys were coming to visit and if possible I didn’t want to be hooked up to a drip. I knew then that this was going to be a challenge as she said she was in herself and they would be short staffed.
So I’ve showered, paced the floor and played games waiting for the infusion to start. I got started about 12.30 so looks like I won’t be finished before the boys come up. The agreement was that the boys were coming up after McDonald’s so we managed to pass the time and get the treatment finished before they arrived. I don’t think the steroids were better tasting today. But definitely didn’t seem as strong. Although today I’ve felt a bit more heartburn, apparently this could be the steroids.
Over the past few days I’ve been trying to decide if past symptoms are re-emerging. I’ve sometimes had the weakness in my arms back, I’ve struggled with my eyesight a bit, had a slight difficulty walking. But it could just be ms at the level it already was at.
When the boys came and my friend from work I went a walk over into the new part of the hospital. That was probably the worst I’ve felt through this. It was extremely tiring. But at least it might help me sleep.
Tonight we have turned down the thermostat and I’m on window duty if it gets too hot.
Drinking fluids is important through this treatment to prevent headaches. I can’t say I’m trying to drink more but I am thirty. I thought it might be useful to record how much I’ve drank each day. Day 3 – 3.3lt
So before we start on day 2 there is the night before. I suppose as far as hospitals go it was okay. I woke up and could see some light through the curtains. I thought this was great as I never sleep through the night or more than a few hours at once. Checked my phone excitedly to find that it was 1.30am! What a disappointment.
From then every time I moved or I think anyone else moved I woke with the sound of the bed sheets crinckling. Then I’m guessing about 3 in the morning I got my temparature taken again. I was fine so to try and get a few more hours sleep.
Yesterday the room had got really hot and the windows had been open. So knowing typical hospitals I left the windows open a crack. Mistake number one it got cold over night. Won’t be doing that tonight.
Got up in the morning and decided I would attempt a shower. Fun trying to keep one arm dry where my arm has been bandaged for the cannula. But I think I was successful and I then found the ward much warmer to come back into. But now there is a new panic, my temperature had just been taken again. But maybe if I’m feeling hot then I could have a temperature starting? Such a hypochondriac and I’m sure it will amount to nothing.
Other than getting the drugs nothing really eventful happened. I don’t think I’m going to get used to the steroid test though. The treatment started earlier, about 10.30, so that meant I was free to move around from 5.30pm.
My brother visited today. He brought a great gift package up with things I might need. Some of which I had looked at but not bought for some reason.
After the night before with the static bed covers and the cold I got my mum to bring up my fleece blanket. Much more homely and comfy.
Since I had my evening free I even got to have a walk. I didn’t venture far, just to the ground floor and outside for some fresh air and spoke to my youngest on the phone. My eldest was too busy doing homework.
Drinking fluids is important through this treatment to prevent headaches. I can’t say I’m trying to drink more but I am thirty. I thought it might be useful to record how much I’ve drank each day. Day 2 – 2.6lt
So the day starts of awfully slow. I’ve to be at the hospital for 10am. Who would have thought parking at a hospital with 4 car parks 2 of which are multi stories would be so difficult!
We must be about 15 or 20 minutes late because of this. But I have a feeling it won’t really matter from what I’ve heard from others as I’ll probaby start around 2pm. Around about 10.30am I’m checked in officially and asked all the usual hospital questions.
I’ve to provide a sample, I’m getting desperate so that’s not going to be a problem. Then they will phone the lab to get the treatment set up. Apparently it’s £1000’s for the medicine so they want to make sure we turn up and are suitable for the treatment before it’s made up. This should take a few hours.
I have to say day 1 has been pretty uneventful. The cannula was put in, saline solution flushed through, and then the steroids around 2pm. No one can prepare you for what the steroids taste like! I had sweets and mints from advice of others who complained of the same issue.
So around 3.30 I was ready to go, my first dose of lemtrada. What a boring day. Nothing really happened, there was nowhere to go! I had to just sit still and wait. It takes about 4 hours and then another saline flush. So I was finished around 8.30pm.
The only difficult I really seemed to have was every time I moved the cannula would start to bleed. But I was assured this was okay. I got a touch of a sore head. But I’ve blamed the strip lighting rather than the lemtrada for this.
I had 30min ish observations. It was our job to remind the nurses to take these obs. Just blood pressure and temperature. But I think this made the whole process feel slower as I was watching the clock for every 30 minutes coming around. Without this I could have tried to loose myself in a book or even rest. I didn’t realise when this was my only job how difficult it would be. I kept forgetting when it was supposed to be. It wasn’t until later that I realised why this was confusing me. We agreed I would call the nurses at half past and on the hour. But by the time they found a machine and did the readings it was quarter past and quarter too. This then messed up the next time unless I called them back through 10 minutes later.
Already my days and hours are rolling into one. I’m not sure how I managed to pass the whole day yesterday. I know that I read for a little while. Chatted to the others on the ward, played some games and spoke to a few friends, family and my youngest on the phone and via text. Well hopefully it’s a good night’s sleep and on to day 2.
Drinking fluids is important through this treatment to prevent headaches. I can’t say I’m trying to drink more but I am thirty. I thought it might be useful to record how much I’ve drank each day. Day 1 – 2lt
Lemtrada has difficulties with lowering the immune system after infusions. So hygine becomes really important to stop infection. We are advised to wash our hands regularly and basically follow a pregnancy diet.
So before even getting my treatment I’ve followed this diet for 4 weeks and it’s like being pregnant again without the foilc supplement. Knowing about my treatment in advance, I’ve had time to tidy or sterilize my house. This is not an easy task with two young children, and two boys at that! Every time I clean something they leave a used tissue somewhere. Or worse cough and sneeze all over the clean surface or me.
While on one of my many tidying sprees I realised that this is like “nesting” just before pregnancy. Those weeks before Labour where I realised that top shelf needs cleaned as it maybe never been cleaned since no one can reach it. And that floor needs a scrubbing brush to make sure it’s clean. My usual flash or bleach just isn’t going to be enough on the end of the mop.
I’m hoping to keep this blog updated regularly while I’m in for the treatment, even if this one is a little late being published.
Prior to being diagnosed with MS I can only ever remember being off work twice before. Once for 2 weeks due to demands of work along with life situations and this was probably 10 years ago now, probably more actually. And the second time was about 6 years ago and I was off for months with optic neuritis (yip MS before I knew that I had MS).
I might have had the other odd day? But I don’t remember and if I did then I probably worked from home to get things done.
But now that i’ve been diagnosed I feel like I am off all the time. I was at the GP this morning and she advised I take two weeks off while I start this new medication (Gabapentin). I’ve to take one the first day and gradually increase the dose. I have to say it was amazing it was the first time in days that I didn’t feel any pain. They had some side effects like dizziness and drowsiness. But I still felt better and happier without the pain there. So we will wait and see how things are tomorrow… and the next day.
So after my bad weekend I decided to drop by my MS clinic and speak to them. I needed to get the tests done for Lemtrada anyway.
The blood tests were easier than normal although i think they needed 4 bottles. I noticed today how helpful the MS nurses are. It really feels like they will do anything.
So blood tests and urine test done. I’ve been assessed as having a weakness in my right arm which isn’t too surprising and to start gabapentin for the pain. I’ve made an appointment with the GP for tomorrow anyway so I’ll hopefully get started soon.
So it’s been a busy few days from getting MRI results to meeting with the MS nurse.
I have 2 young children who I will need to arrange alternative care for when I’m getting this treatment and after i’ve had it. So I took my dad with me to this appointment as my parents will probably have the kids.
We discussed the other drugs that are available to treat MS but the nurse seemed pretty set that Lemtrada was the best option for me. What she advised was that other drugs were a “first line” drug and when they failed to work then a second line drug would be looked at. So instead of waiting for a relapse which could leave a disability, just hit it hard with lemtrada.
At the appointment I was also given a nice purple leather folder with all the leaflets about lemtrada in it. Maybe this is why the drug is so expensive?
I thought that my treatment would be around August time (7 months away). But when I went for the appointment it looks like it’s more likely to be March (2 months away). I can’t believe it’s all likely to be happening so quickly. I should know a definate date in a few days but first i’ve to go back for blood tests to check I don’t have hepatitis, HIV or TB plus loads of other tests. Then within the next two weeks I will also get a chest x-ray to ensure I don’t have dormant TB.
At least I’ll have an up to date list of everything I don’t have!