It's been over 9 years since I started my Lemtrada journey it's a marathon not a sprint and in my case it's got a spin off show too now I'm on Ocrevus. Best decisions I could have made, no regrets, fight for yourself because you're the best person to do it This is normally updated weekly please subscribe so it will tell you when I've updated it
Friday, 15 May 2015
Updates from this week's Lemmies
There are 3 lovely ladies in the group I use so I'm gong to pop each of their updates in here
H - Day 3
Day 3 of lemtrada done and over with!! No rashes so far but expecting it tomorrow. If u do t get one I'll be the only person at this hospital never to have got it. Not expecting miracles but might be nice to break the mould! 2 more days to go. Feeling very tired today. x Yay hump day is over for us!! Only two more days and hopefully no more steroids. They're making me mega hungry and my blood sugar is sky high because of it. Don't suppose you're getting this problem?! x
H - Day 4 - Rash Day
Mine came on today (day 4) approx 5 mins after my flush. Common apparently and all has gone now. Boy, was it itchy!!! xxx it was literally everywhere even my face swelled up
D-Day 1
Day 1 done. Finished two hours ago and feel fine. Bit tired but then I didn't sleep well last night. Pulse was a bit high but nothing to worry about. SO glad to get that over with! Thanks for all your support - great to know you are all the rooting for me xxxx
D- Day 2
Day 2 - all done! Feel absolutely fine and my pulse was loads better. Nearly half way and SO pleased to be doing it - it feels right! 😊
D - Day 3
Day 3. All ok - got the rash 3 hours in but one Piriton later and it's gone! Feel absolutely fine. Bit nervous about not having the steroid tomorrow but I'm sure it'll be fine. More than halfway
D-Day 4 - Rash Day
I had the rash today!! Yuk! Really itchy and blotchy! Nearly gone now - might need steroids tomorrow. Was told I looked like a Dr Who creature
G - day 1
Day 1 done. Everything is going ok. Had a headache which a paracetamol fixed. Felt exhausted hour and a half into my treatment but i had a little kip and felt fine again.
High heart rate and low blood pressure but everything seems ok. Hope I will sleep tonight.
Onwards and upwards to tomorrow. x
G - day 2
Day two done. Going well. Sailed though it easier today than yesterday. No headache and no tiredness.
Looking a bit flushed tonight though. Can't decide if its a rash starting or am i just red in the face. Got Eurax ready. Should i put it on now just in case as its not itching?
So this is what I will be expecting and preparing for next week, change in heart rate, elevated blood sugars blood pressure dropping and of course rash day - bring it on
Lemmie's united - together we are kicking MS in the nuts :-)
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