Tag: lemtrada

Day 3 and 4

Day 3 and 4

Days 3 and 4 were for the most part, boring.

I had a sleeping pill day 3 due to the screamer and the steroids. Still only managed minimal sleep though.

Got a bit of a surprise yesterday, i was moved to another ward. I can still hear the screamer, but with the help of another sleeping pill, i managed 8 hours sleep!!!

I also developed hives over night. My fellow MSer in my new ward, tells me it means its working

Im now struggling with my eyesight, they warned me some of the MS symptoms could come back

Its now Sunday. My eyesight came back within 2 hrs. I was exhausted but excited to get home. I left at 8pm

I slept all day Saturday. I was awake about 3 hours.

Today, the cat was sick on my bed so after an hour i managed to change the bed, put a wash on and have a shower, I’m now back on the (clean) bed awaiting Mr Me and Little T to come home from shopping.

I’m exhausted. This may be life for the next 2 weeks. Luckily Mr Me has time off over Christmas to help me out, i am on my own tomorrow but I’ve got backup if i need it

Love, Little Miss PMA xxx

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Day 2

Day 2

I think i fell asleep about 2am. The screamer chatted til 12.45am but then i had obs at 1am so couldn’t settle again.

I woke up a couple of times and have been wide awake since 5.10am.

Coupled with the 20 minutes of sleep Sunday, i think its safe to say I’m probably a bit tired.

I’m having to have regular obs as the Lemtrada can affect my heart rhythm (so far so good) and the steroids can affect my blood sugar. I tested at 15.5 and 14.9 yesterday. The higher one was just after i ate and the 2nd one 2 hours later, but i had had a packet of crisps and a chocolate bar inbetween as the steroids make me HUNGRY

The chest tightness from yesterday was relieved with my inhaler easily enough. I also got very achy like i did back in the early days of my symptoms and i felt a burning itchy sensation but no rash as yet.

Lets see what today’s dose will bring

To be continued…

The steroids are still vile as is the taste they leave

Very few other symptoms, other than insomnia…

Love, Little Miss PMA xxx

Day 1 of Lemtrada

Today i arrived at the hospital half an hour early. I didnt sleep a wink last night.

I was shown my bed, I’m in a ward of 4. I was last woman in. We have a screamer, a lovely lady who weeps a bit and the lady next to me is quite poorly and struggles to speak.

I’m the only 1 with MS. I’ve had bloods taken, swabs taken and pee’d in a cup.

Nothing of note happened until about 2pm.

I’ve had IV steroids (left a vile taste in my mouth), and I’m finally on the Lemtrada.

Its the stuff in that bright red bag. The stuff that can’t see light. The stuff that looks like it could kill ya. Yeah. Even the nurse described it as a toxic medication

I’m waiting on paracetamol and an antihistamine as ill spike a temperature and ill get an itchy rash.

My drip needs a new battery pack and i think my chest is feeling a bit tight.

I’ve been on the bloody thing less than 30mins and I’ve got a tight bloody chest.

What fun.

I’ve watched a lot of TV and I’m now watching The Meg.

Love, Little Miss PMA xxx

Holidays and Hospital Stays

Holidays and Hospital Stays

Last week we got back from 10 days in Northern Cyprus. We had a lovely time, Little T, particularly so!

The flights over were fine, but the layover in Istanbul was beyond stressful. Mum and my Bro went missing as we were separated getting off the plane, i had their passports and boarding cards, so they were stranded, and it took well over an hour for someone to take me seriously. This all because my Mum uses a wheelchair when travelling.

Anyway, we got to the hotel in 1 piece. Mums wheelchair spent the night at a different hotel mind you as it was unloaded incorrectly from the transfer!

My Grandad then passed away whilst we were there, but we tried to make the most of it. I think that’s what he would have wanted.

Little T was known throughout the hotel and down in the harbour. He managed with the heat incredibly well but isn’t a fan of a shower. He discovered chips and ate them everyday, along with Cyprus sausage, he learnt lots of new words and took lots of walks (not independently yet).

Since being back, I’ve booked Christmas dinner in Leeds, only to be told 20 minutes later, I’m having my MS treatment the week before Christmas and that kinda is the worst timing ever.

Ill be in hospital for 5 days from 17th Dec. Ill be given Lemtrada via infusion over those 5 days. The medication will bind to and destroy my white blood cells so ill be immunocompromised following the treatment. So being in a pub full of people 4 days later isn’t ideal!!!

Mind you, nor is handling strawberries due to the Listeria risk, but you gotta live, so ill be sat in the corner come Christmas day, keeping away from people!!!

I honestly thought after losing 2 babies and doing 9 rounds of IVF, I’d paid my dues, seems that’s not the case!

No rest for the wicked

Love, Little Miss PMA xxx

A date with L

A date with L

My appointment with the MS consultant was actually today, not tomorrow, thank god i checked my diary…

I’m going to be treated with the Lemtrada, the drug that sounds horrific.

It could stabilise me for up to 12 years though.

I will be able to try getting pregnant again in a couple of years.

I’ll likely start treatment in November/December as i have a trip to Seville booked early November.

The drug will essentially wipe out my immune system, ill need lots of post treatment meds, antibiotics and anti virals for example, for a fair while after the 5 day stint in hospital.

Ill be very fatigued during and for a few weeks after the treatment as it’ll break down my T and B cells, and all the chemicals from inside the cells will enter my blood stream

I will be able to have my 4 weekly blood tests locally which is a small bonus.

I can still have an alcoholic drink, but not too much before blood tests as it’ll mess with my enzyme levels.

Ill probably need another MRI before commencing treatment and have to keep my Dr up to date with any relapses.

So, there it is. Next 4 years of my life planned out, probably a rubbish Christmas, at risk of picking up everything due to a suppressed immune system. Excellent.

Been advised to avoid forums, won’t be an issue as i just want to deal with what comes, as it comes.

Going to be difficult, but when is life easy?

At least i can enjoy Cyprus and Seville and theres a plan in place, and i do like a plan!!!

Oh, and i need to stop vaping before the treatment!! #myonlyvice

Love, Little Miss PMA xxx

Hand forced?

Hand forced?

So i had a call on Thursday from my GP, he told me he had had a letter from my MS doctor and i wasn’t to have steroids during an MS flare up.

Fair enough.

Today i got a copy of that letter and its terrified me.

I’d contacted the secretary of the MS doctor to advise we would like another baby so he asked me to come in this week (Thursday). In the mean time he wrote to my GP to say

  • I have relapsing remitting MS
  • Its rapidly evolving severe
  • My MRI’s showed that between 2015 and April 2018 there was a significant increase in lesions
  • Between April 2018 and June 2018 there were THREE MORE lesions (explains all the symptoms i was having)
  • As i was considering another baby, he wants to try a different medication, Lemtrada, as it provides a long lasting effect and will hopefully prevent relapses during pregnancy

Lemtrada does not sound pleasant, at all

The long term effect on disability is uncertain

Its given by drip over 5 consecutive days and i HAVE to be admitted to hospital as nearly everyone has an allergic reaction, treated by antihistamines and IV steroids

I’d need a second 3 day course in a year.

1 in 3 people develop under or over active thyroid requiring lifelong treatment

1 in 100 develop a blood condition

There have been a few cases of people developing a kidney disorder too

These conditions can be life threatening so I’d need blood tests every 4 weeks for FOUR YEARS after completion of the infusion

But, its PROBABLY safe to get pregnant 4 months after the last infusion. Probably.

What the fuck am i meant to do with that??

Head is up my arse.

I refuse to Google.

Love, Little Miss PMA xxx