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laura-forde
4 months ago

I’m in Scotland and of the understanding I won’t get one as its not one of the applicable drugs. I am isolating however as much as I can


robean
4 months ago

Hi @coralellis,

I received a letter today which I wasn’t expecting as I am only on Tecfidera and otherwise well with no other health conditions, MS is currently stable and all my bloods were perfect when last checked in March.


guy_mckeag
4 months ago

I also received one in the post. Like you guys I’m on Tecfidera and wasn’t expecting one either


coralellis
4 months ago

Thank you guys for replying. I received mine yesterday, I could not wait to kick my partner out of bed and say this is mine go sleep somewhere else!!!!!! Hahaha. Look after yourself, stay safe. Coral x


laura-forde
4 months ago

Geez I’m married with two kids although my husband only leaves the house for shopping, we don’t have any spare bedrooms to use. Hope this is enough


vixen
4 months ago

Hi, I was told that Tecfidera wasn’t on the risk list so I wouldn’t get one. this shows there is inconsistency in the UK I think. Hey-ho, maybe I’ll get one in the next re-assessment, which I think is going on at the moment. All the best guys


kateb
4 months ago

Yes I have had one. I am in the UK. Devon. Nothing else but MS wrong with me, so I was surprised


joholl
4 months ago

I got one too, was also told tec isn’t a risk, I’m only newly diagnosed, nearly a year and have been in great health for two years. I’m considering ringing my nurse for advice, I shop for my mum and dad in their seventies ( only once a week) and exercise outside on my bike. Does it mean we are in total lockdown? What are you guys doing? I’ll abide by any rules as I am now but thought I was ok on that drug.
Stay well x


kateb
4 months ago

@joholl, I am also shopping for my parents and for my family. I found out last night that Tec isn’t risky in itself, it’s the minority of patients that get a low white blood cell count caused by tec that could be at risk. I presume you have had your blood tested for this? I hav’nt as I have not been on it long enough, and I don’t suppose the hospitals will want me for a while.
By the way, I got my info on youtube, so don’t quote me!


coralellis
4 months ago

My ms nurse was shocked that I received the letter as my bloods are normal and I dont fit the criteria. They said the letters come from your gp not the hospital. They must know something no one else does!!!!! Stay safe everyone and wash your hands.
Coral x


joholl
4 months ago

@coralellis @kateb
I’ve emailed my nurse too, my letter came from the GP. Bloods were all ok on my last visit so hopefully I’ll be able to do click and collect for Mam and dad at least 😂 and drop it off.
More concerned about them tbh.
Hope everyone stays well and thanks for the replies xx


spuddie007
4 months ago

Haven’t had a letter from GP, but then my GP is not particularly helpful. They know I have MS but I don’t honestly think they know what meds I take for MS apart form those that are given to me by them, mainly Amitriptyline and Neurontin.

I’d be surprised if I get one.


chezy17
4 months ago

I had a letter from my gp but I still have to go to the shops, on my own with the munchkins so no choice really. Just make sure I wash my hands and I wipe everything down with wipes that I buy. 😊


dominics
4 months ago

Folks, the letters are a real sledgehammer approach. Government takes a helicopter view. There is so much stuff out there now that if on a DMT it is far easier to assess your risk.

Those of us on immunosuppressants may, perversely, be better off. Covid-19 wreaks its damage by sending the immune system into a very harmful overdrive. The DMTs may in fact help damp down the overactive immune response.

That is not a ‘go wild and start licking the railings’ thing. Like everyone, the less social contact the better in order to slow the spread of the virus to a level where the NHS can cope.

Stay safe.


vixen
4 months ago

Hi @joholl, that’s strange; I’m in York too, on Tec and have previous lung condition but I didn’t get one due to being on Tecfidera! I think this is down to who is deciding, rather than following a blanket rule for criteria. Stay safe 🙂

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