Last reply 1 month ago
Starting Lemtrada next month

Hi everyone 👋

I was diagnosed with RRMS in May 2009 and started treatment (Rebismart ) 2 months later which I absolutely hated! #Painful. Was on it until 2014, then I started Gilenya. Another rollercoaster with all the symptoms like fatigue, foot drop, muscle weakness and the list goes on. Those treatments failed 😞 and now I’m going to start Lemtrada next month and I’m dead nervous 😯😞

 I’m looking for tips on how to manage, what to bring with me and how I can prepare for it, which will be extremely helpful 😁

Thanks!!! 😁

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stumbler
1 month ago

Hi @cuteness-overload , I’m sorry that you’re having to go through all this at your age. Having said that, your age is on your side to hopefully regain any lost function after your Lemtrada treatment.

I have no personal experience of Lemtrada, but you can find out a lot by reading through our @tracyd ‘s blog :-

http://tracyslemtradajourney.blogspot.com/


nurse47
1 month ago

It has been a month since completed the first treatment of Lemtrada. Make sure that you drink plenty of fluids aim for 3 litres to flush out the toxins. I developed the rash on day 4 however it had gone 4 days later and could stop taking the antihistamine. Had very little side effects slight headache on 1st day, lost taste however put that down to the steroids. On the Saturday day after finishing treatment, was absolutely floored just rested for about 4 days drank plenty of water, applied cream to rash and by day 7 post treatment feeling well enough to return to work. I like to meditate so found that beneficial while recieving treatment, use whatever makes you relax. Don’t worry the thought of starting treatment and what you read is more frightening than the reality. Hope it goes well for you 😀


tracyd
1 month ago

@cuteness-overload

Hiya thanks to stumbler for the tag. You have a friend request waiting and I’m happy to share contact details by PM if you would like to talk.

You’ve had the rest it’s time for the best I guess with Lem.

The blog is the last 3 and a half years of life before during and after Lem. There’s also a link in my profile page to the ebook of year 1 with all the money coming directly here to the nice people at Shift.

It’s been an awesome time for me. It sounds big and scary but it was okay and really all a bit of a storm in a tea cup when it was done and dusted.

Here for chats advice and putting the world to rights xx


cuteness-overload
1 month ago

@nurse47 thanks for your kind words, is the cream you used for your rash over the counter or the staff gave it to you?


tracyd
1 month ago

@cuteness-overload for the rash a few things are widely used, camomile cream, eurax anti itch cream, there’s a strangely named Australian product you can get online called ‘Anti monkey butt’ gel / cream and an American product that you can again buy online called Solarcaine – an aloe Vera gel which has Lidocaine in it – the last worked really well for me – it’s a burn gel and the lidocaine numbed the itch – works well on chicken pox too LOL xx


nurse47
1 month ago

Hi The unit staff gave me it, it is eurax cream and is brilliant. There is no restriction on how much you can use, it acts for 8-10 hours, cool bath or shower also helps.The UK give you a month’s supply of co-trimazole you take on a Mon,Tues and Friday to reduce the risk of listeria and acyclovir to reduce the risk of the herpes virus being triggered. Along with paracetamol and a antihistamine. These drugs start on day 1 of you treatment, the paracetamol and the antihistamine are short term and can be stopped after day 4. Just to let you know I wasn’t covered head to toe with the rash had it on certain parts of the body front thigh area,. Few spots on both arms and back and front torso area ☺

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