Super team for super drugs

Its was a post bank holiday Tysabri day!

I’m so impressed with the team today on Day Case Unit ward 43!

Because yesterday was a Bank Holiday here in the UK, everyone that is due Tysabri on that day gets changed to the next day. We have to fit in around everyone else that also has medication the day after we would normally have ours. And its done extremely well!

No one complains, its a full room, even with the Monday crew. But it just gets done! I think its lucky that the Monday people like to arrive really early, and generally as a rule, we tend to be finished not longer after Tuesday’s patients arrive!

MS nurses going that extra mile!

Today, was exceptional though! Not just the 2 wonderful nurses – Dianna & Faye – we normally see on the ward working today. No, today we had two wonderful MS nurses chipping in as well – Jeanette & Michelle! One of them being still reasonably new – Michelle (to me anyway, I think it may have been my 4th or 5th time seeing her)

It was Michelle that had phoned me last Friday, this was the nurse who was so insistent on me starting the steroids! The nurse who, miraculously managed to talk me into taking the steroids! Remember, this is the drug that I have written on all my medical notes ‘NEVER AGAIN!’ But in my heart of hearts, I know how important this drug is! Even if it makes me feel poorly, I wouldn’t be prescribed it if it wasn’t completely necessary! And lets be honest, there’s worse drugs out there!

How many tablets!?

Today was a great chance to talk with Michelle, with the nurse that actually managed to get me to see sense when it came to taking Steroids!

Luckily, Steph wasn’t to far away, to make sure I was asking the correct questions & to be my memory, for the answers I needed!

When we told Michelle about the amount of tablets the pharmacy wanted to dispense me, the look on her face! “Nooooooo!” “5 tablets for 5 days!” She said!

Oh thank goodness for that!

She thinks they may have gotten confused with the Omeprazole dosage (the medicine that protects the lining of the stomach while taking Steroids) this is to be taken for 7 days, 2 days after the Steroids have been finished!

Bless her, she printed out an information sheet as a reminder!

I don’t know how many times I’ve seen this, but it was great to see! The thought of high dose Steroids for another 2 days was not a good one!

A well needed drink after my 100th Tysabri!

I don’t think I’ve ever been out from my Tysabri treatment so quickly! Team work was definitely in play!

Tysabri (natalizumab)

​Monday already and the alarm is set to wake me up in less than five hours! 

Its been four weeks since my last infusion so that can only mean one thing… Time for some more of the good stuff when daylight breaks! 
This is my super juice! My drug not so much of choice because, come on, really who chooses to pump chemicals like this through their veins without getting a ‘high’ afterwards! 

Actually, thinking about it, yes, I choose! I choose this over monthly relapses, over loosing my vision, over being wheelchair bound! 

And there is a high, eventually, after the initial feeling like crap! The high is in the knowing that I have been relapse free and steroid free for a whole year now! Knowing that the relapse I know i had last year was minimal in comparison to before I was put on to Tysabri! 
So heres to you NHS! I salute you for the service you provide for me & my MS family and anyone else that calls upon you! 

Eternally grateful, me!

Image shared via pintetest

It’s no walk in the park

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However, its not just any Monday!
No, it’s drug day! *courtesy of the NHS*

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So, every 28 days I go into hospital and sit hooked up to a machine! I’m there from the hours of 8am until anywhere between 11am & 1pm!

That’s right, tomorrow is day 28!

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Thank goodness for the wonderful monoclonal antibody that affects the actions of the body’s immune system.
*Monoclonal antibodies are made to target and destroy only certain cells in the body. This may help to protect healthy cells from damage*

Thank goodness for this wonderful drug that keeps my relapses at bay and is helping me live as much of a normal life as is possible with Relapsing Remitting Secondary Progressive Multiple Sclerosis
*Secondary-progressive MS: People who get this type usually start with relapsing-remitting MS. Over time, symptoms stop coming and going and begin getting steadily worse. The change may happen shortly after MS symptoms appear, or it may take years or decades*
But I still have relapses, or at least I did until I started…

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2.3 Natalizumab (Tysabri) is administered by intravenous infusion; the recommended dose is 300 mg every 28 days. Natalizumab costs £1130 per 300 mg vial (according to the manufacturer’s submission), so over a year the cost of the drug is approximately £14,730 per patient.
Multiple sclerosis – NICE

www.nice.org.uk

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It’s not walk in the park but I’ m ready!
Bring on the drugs!


megaspecial.co.uk

Sun kissed

Like mother like daughter on this subject!

I am the first one to tell someone how silly they are for not looking after themselves in the sun!

It doesn’t matter what country you are in to apply sun cream, the sun still burns in the UK!

You don’t even have to be sun-bathing to apply sun cream, the sun still burns when you are doing some gardening!

Remembering to apply water proof sun cream is just as important too, the sun still burns when you are in the sea!

The thing to remember is the sun will burn you no matter what country you are in!

The sun doesn’t even care if you are on holiday or not, if it sees you out even just taking your lunch break outside because ‘the sun has got his hat on’ He won’t take off his hat to greet you, no, he’ll get straight to work with his powerful UV rays and he’ll fry you to a crisp!

I recently read an article about people using the sun to burn pictures onto their body

Actor Vin Diesel from the Fast & Furious films hails this craze as ‘glorious’ on his Twitter account he says “Sunburnt art is a Real Thing, and it’s Glorious”

I for one cannot see how letting the sun do this to your body is glorious when skin cancer is one of the most common cancers in the world!

There are more than 100,000 new cases of non-melanoma skin cancer every year in the UK!

Annually 13,000 people are diagnosed and there are more than 2,000 deaths, and the death rate is rising!

I know this seems very different from my normal blogs about MS, exercise & positivity but it still links with a treatment for relapsing-remitting multiple sclerosis (RRMS) called ‘Natalizumab’ also known as Tysabri.

Natalizumab is also linked with Melanoma although the association is unclear, in my opinion it is better to stay safe & protect yourself against the sun and its UV rays!

The truth about exposing yourself to the sun without protection is that you are actually exposing yourself to radiation! Now you have to admit, the word radiation is scary! So why do people do it? Why do people purposely lie in the sun without the required protection against first or second-degree burns?

That’s what sunburn actually is, did you know that? How do you feel about it now?

Time to start using sun cream?

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All that said, I am now naming and shaming myself!

Yes, you read that correctly! The picture above is the sunburn I got over the weekend whilst I was in the garden sewing some late seeds & pottering around doing my best to tidy.

I didn’t even give it a second thought to put sun cream on which is so unlike me!

I know by sharing this picture I will very likely be getting told off by friends and family and I accept it! I deserve the telling off because it was very stupid of me not to put sun cream on! Especially as I take ‘Natalizumab’ or Tysabri, I have a fair complexion & I have a suspicious mole that you can see in the picture.

Unprotected exposure to extreme sunlight and ultraviolet radiation is dangerous, it hurts & it looks ugly when the dead skin starts to ‘peal’

Don’t do it!

Wear the correct factor sun cream, a hat, drink as much water as you u leak out & don’t stay in it for too long at any one time!

Enjoy the time you have, spend it wisely & don’t regret the time you spent in the sun unprotected!