Lemtrada day 1

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

Advertisements

2 days till Lemtrada. Am I going for treatment or to have a baby?

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.

Off work again – is this going to be my new normal?

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.

Blood tests

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.

Life Stress’s and MS – when will things calm down and stay calm?

So I stated this blog over a month ago and didn’t get by the title (which i’ve now also changed).

Recently i’ve been thinking a lot about the stresses that I have in my life and how to reduce them. I believe that my current stresses will have contributed to my relapse. And there is definately a link to when I get stressed and my MS symptoms suddenly become more noticeable.

Work

Partly work is just work. I can’t afford to stop working and I think I might also be bored without work too. But recently workloads have been ridiculous. We should have case loads of about 50 although i’ve heard other areas have closer to 35-40. However my area is closer to case loads of 70! No wonder I’m getting stressed. There isn’t the time to manage this high a workload and staff are starting to go of sick with the pressure.

This is something I need to find a way to address. So my thoughts were to put in for a lateral transfer. So I will be transfered to another area soon that has less stress and a slower pace of work.

But since i’ve been told that I am getting Lemtrada and the time off work that I will need it’s been discussed that the transfer should maybe be delayed!! I can’t decide if I understand the reasoning for this or that starting a new job after Lemtrada could just be more stressful.

Children

Again children are just children. I can’t get away from them or give them away. And I wouldn’t want to. But sometimes children cause stress that they don’t realise that they are causing. For example my eldest is struggling with his behaviour just now. Not that he is agressive or nasty. He just will not listen. Even to his teacher. This is concerning me enough that I have arranged for him to meet with a play therapist. I think he’s a thinker, and my instinct says he’s worried about something.

MS

The unknown of MS is a stress to most of us I think. You never know when you are going to have a relapse which you may loose a bodily function or use of a limb. For most of the time this is something I learn to live with. But sometimes it causes anxiety or stress. And I’m sure that this is a normal human response.

I’ve been put forward for Lemtrada so it should reduce the chance or relapses by 70%. And I will be monitored very closely for a number of years. I think this gives me some reassurance. But the thought of the treatment and the impact that it may have on the short time is a slight stress.

My ex

I don’t know what to say about my ex. He’s an idiot! My previous blog posts show some of his behaviours but that’s probably just the most extreme. Recently it’s more trivial issues, but that might me more about my response and feelings about the situation. He’s an idiot, I’m not going to change that, so I need to learn not to let it stress me.

So what if I suspect his behaviour is impacting the children. Right now all I can do is monitor it, record it and try not to stress myself or the children.

This house

My house is a disaster! I moved to a house all on the one level as I was finding the stairs so tiring. But this house just keeps needing more work! I’m nearly at a stage where I can show the before and after pictures so I will share them soon. But really if it could have gone wrong then it has.

First appointment – Lemtrada discussion

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!

Oh the pain. It’s so sore 😪

Yesterday might have been one of my worst general MS days. I felt shattered all day and the pain. I can’t say the pain was located to just one place, it was generally everywhere. And if anything touched me it was even worse.

I started typing this yesterday, but even that was hurting and I had to give up. I took paracetamol and ibrufen, and it didn’t even feel like it touched the pain.

It was a horrible day and I hope that today is better. So far it hasn’t been as sore. But then ive only been awake for 45 minutes.