Last reply 1 week ago
Lemtrada

so the journey begins today- sitting here waiting for my treatment to start- feeling positive only real concern is being away from my little girl (6 months old) for so long everyday!!
I am hoping this will bring the ms to a halt for a long time and maybe even improve some symptoms.
i know 3 people who have had this treatment and so far its been a game changer for them so all fingers and toes are crossed!!

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stumbler
8 months ago

Good luck, @laurabug .


laurabug
8 months ago

Thank you @stumbler


lightning87
8 months ago

All the best xx


andyturner
8 months ago

Good luck


zarah
8 months ago

Good luck am due starting it next month xxx


bonang1975
8 months ago

Good luck xx


gazmataz
8 months ago

Good luck x
Thank you for your offer. Addenbrookes finally e-mailed me everything is sorted for next week. Once again Thank you and I’m sending you my healing thoughts. ( not that I actually believe in reiki but you never know.)


buford
8 months ago

Good luck! You got this!🌻


laurabug
8 months ago

Thank you everyone……day 1 done and traffic was on our side today no hiccups other than some fluey symptoms for an hour, sharp heart pain with raised heart rate again lasted no more than 20 mins!
Back home in time for my little ones bedtime #winning 🙂 feeling pretty normal yay!


laurabug
8 months ago

Good luck for your treatments @zarah and


laurabug
8 months ago

laurabug
8 months ago

Day 2 -lemtrada is finished and its been another uneventful day 🙂


emmajh
8 months ago

Hi, I’ve just finished my second Lemtrada course 2 months ago. Hope it all goes well for you.


laurabug
8 months ago

Thank you


laurabug
8 months ago

Hope its gone well for you @emmajh


laurabug
8 months ago

Day 3 plain sailing again feeling a bit weary but that might be more sitting around all day!


laurabug
8 months ago

Day 4 involved some shortness of breath so they put me on a nebuliser for an hour or 2 which sorted if and then the rash came but it was just a few spots and the drugs i was given in my sandwich bag quickly sorted it out. Day 5 begins with me oversleeping as i feel very tired but this is the last day so yay!! Addenbrookes nurses have been great and they warn you of what to expect so nothing is a worry.


janie
8 months ago

Im nearly 2 months post Lemtrada I live in Cyprus originally from Ipswich Suffolk UK I had to stay in hospital for 6 days for my Lemtrada treatment I only managed to receive 4 doses of Lemtrada not the recommended 5 as my heart slowed down to 35bpm so the drs decided it was too risky to give me 5 doses however I’m perfectly fine now I didn’t get any reactions my advise to you is drink loads of water I’m talking loads I drank 3litres the first day and carried on from there I’m still drinking loads! I cut out sugar and salt still no sugar only the tiniest amount of salt also definate follow a listeria free diet no unpasteurised milk products no soft cheese no delicatessent items wash everything thought and peel fruit and no take aways or eating in restaurants which you are not sure are if they are totally clean and always wash your hands 😊 don’t worry you will be fine just keep thinking positively 😊 good luck 💕


laurabug
8 months ago

Thank you for the advice 🙂 especially with the listeria outbreaks we keep seeing! I am on the water drinking and peeing loads!!! Not easy with the canula trolley 🙂 cant wait to get this out so i can have a proper bath!


tarinmaria
8 months ago

Lemtrada has stopped my relapses now for 2 and a half years, the problem is that it hasn’t improved the symptoms I’ve always had. In fact, a lot of my symptoms have worsened
I really hope it all goes well for you!


laurabug
8 months ago

Thank you @tarinmaria. All done till next year. Time for some recouperation now and to spend quality time with my little lady.


zarah
8 months ago

So glad it’s went smoothly for you @laurabug now rest n enjoy your time with your little lady they grow up far too quickly xxx


laura2018
1 week ago

@laurabug I’m in the process of making a decision whether or not to ‘go for it’ with Lemtrada treatment. I tried Avonex and it didn’t work for me at all, I felt awful!
I have two children aged 2 and the other is just 4 months. I just wondered your experience of having Lemtrada whilst caring for a little one? Did it affect you for long after? I’m so confused by this decision so looking for any real experiences as I’m worried for the kids more than anything!x


dominics
1 week ago

@laura2018 – I have had 4 different DMT’s now – none of them Lemtrada – and what I can say is that the experiences of others, whilst v useful to hear, cannot be overlaid onto you. If only it were that easy. (I am on Ocrelizumab, no effects at all, the lady beside me had major coughing fit during the first infusion)

We are all so different, our disease is so different in each of us, our prior histories differ hugely and our susceptibility to side effects simply can’t be compared with others.

You have to trust the larger long-term data. It isn’t ideal as it still doesn’t tell you about you, only what does and doesn’t happen in the majority of cases. Extrapolating from that sort of info is the best there is. V. frustrating I realise.

I just replied to someone else here regarding making a choice between Ocrelizumab, Alemtuzumab or Cladribine. My ‘thing’ is the lack of consistency and guidance from the neurologists and teams. I have written a guest post for another blog and even with a ton of editing, it was 3k words. Not ideal, felt more like a paper.

What comes out of other’s research is a major inconsistency – as well as being subject to the behavioural biases that we all are – in the way Neurologists have in both prescribing and also in discussing the issues (for there are issues with all drugs) with you.

Being offered Alemtuzumab is indicative of a forward-thinking Dr. , a good thing IMHO. Go back to them and really make them discuss it in relation to your needs and goals.

You are likely to feel some degree of crap, it is strong stuff. The question is whether it is tolerable and manageable when put in the context of your responsibilities, commitments and attitude to risk.

Best of luck,

Dominic


laurabug
1 week ago

@laura2018 the week of having treatment was pretty tiring. Me and my husband went to stay at my Mums so they were 3 pairs of hands available for two weeks. I would say after the first week i bounced back pretty quickly but then we have to dont we as mums of young uns and i had good motovation 🙂 ! Though, other people i know that have had it were surprised how quickly i got back to normal! I will add fatigue wasnt/isnt really one of my MS symptoms so i dont know whether this was a factor. I am planning foe my next round in July and I am back at work now so I will be booking some leave for two weeks and then requesting to work from home to avoid bugs!!! I hope that helps a little? Happy to chat more as I am friends with 3 other people that have had it.


smurf69
1 week ago

@dominics
I’ve tried to add you as a friend to message you. Could you please send me the guest blog you mentioned. I’ll be starting ocrelizumab soon and am interested to read it please.
Thanks


dominics
1 week ago

@smurf69 – I have accepted your request. The piece is embargoed at the moment so any last min corrections can be made. For example, the MS Society wanted me to clarify that a name in a press release was an ex-employee.

It is far too lengthy for here at 3k words, with a load of references. It is a patient perspective on the inconsistencies in and possible reasons why there is so much difference in the approach to prescribing DMTs to newly diagnosed patients.

I am also making the argument that whatever a clinician thinks they are doing to bridge, or the understanding they think they, have of the socio-cultural-economic-educational gulf between them and many of their patients. These deep issues create many further issues.

Still awake?

I’ll publish it on my own site when it is ok to do so and give a link here. I imagine it will be about a fortnight.

best,

Dominic


dominics
1 week ago

@smurf69 – fwiw, I am on Ocrelizumab too. Started Jan 9th.


smurf69
1 week ago

Thanks @dominics


laura2018
1 week ago

@dominics thanks for your reply. Some ‘food for thought’ in your last paragraph to me.
I am finding the level of support and information from the Neurologist and MS team somewhat inconsistent which surprised me, I am seeking support elsewhere wherever I can and asking for further discussion with them before I make a decision, I am leaning toward choosing Lemtrada just have to get around the risk side playing on my mind.
Thanks again, Laura


laura2018
1 week ago

@laurabug thanks for your reply. That would be amazing if we could chat further? I do suffer with fatigue so that may be a factor for me but who knows?! This is such a strange place to be in isn’t it, it feels like such a huge decision!

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