Last reply 5 months ago
Lemtrada

Hi all,

Just wondered if anyone can help me please? As a newly diagnosed patient, I was talking to my MS nurse about treatment. I was told that the wait in London for Lemtrada is 8-10 months? Anyone know that to be true? Is it less elsewhere in the country? Is it offered privately does anyone know?

Thank you,

Sara

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stumbler
5 months ago

@perf1 , you could try asking the Patient Advise and Liaison Service (PALS) at your hospital.

Or even call the MS Society Helpline (0808 800 8000) and see if they know anything.


zarah
5 months ago

Glasgow is roughly a 3 month wait as am hoping to get my date thru as am waiting xxx


kellzxox
5 months ago

I had my 1st course in 2016 it was about 3 months wait I’m in Cornwall xx


omega-female
5 months ago

Hi @perf1

I’m waiting for Lemtrada too, at King’s in London. I would recommend the Lemtrada UK Facebook page – its been really helpful for me. My screening appointment is on Friday (decided to go ahead with Lemtrada 3 weeks ago) and from what I can gather I’m expecting treatment to take place in mid-June – so 6 weeks or so after the screening appointment.

8-10 months sounds a very long time from what I’ve read.


samlex11
5 months ago

Im getting mine in Haywards health wait was 3 month


perf1
5 months ago

Thank you all x


omega-female
5 months ago

Hi, I just wanted to update – I had my screening appointment at kings today and my admission for lemtrada has been provisionally booked for June 4th, it would have been the week before but my ms nurse is on holiday that week. So that would have been six weeks from deciding to go ahead.


zoec
5 months ago

Hi, I saw my nurse at in Jan ’18 Charing X and was told it is a 6 month waiting. I had an appointment yesterday with nurse and
again was told it’s a 6 month wait. So, what over 1 year 😐


tracyd
5 months ago

Lemtrada isn’t covered under U.K. private health policies it’s too expensive bupa laughed at the suggestion of it.

The waiting time depends upon the hospital you would have it at and how many places they allocate. When I had round 1 in 2015 at Southampton they had a single bed that I was going to be in for 5 days. By round 2 I was in a nice reclining chair in the outpatient ward with the Tysabri people during the infusions but a ward bed at night.

Some hospitals now let people go home overnight and can allocate more chairs for an outpatient ward and do more than 1 person a day but they’re the exception rather than the rule.

In the US most people spend their nights in hotels if they’re a long distance from the infusion centre, eat out in restaurants for their meals and life goes on. I guess for once in this country we are a little slow on the uptake of how much less difficult it could be.

Sad really in its previous incarnation this medication was given in 12 times higher doses to people who drove there and drove home afterwards 🙂


perf1
5 months ago

Tracyd thanks. I am under charring cross too. Seems like it’s the longest wait across London which is worrying 😩

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