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lea_jeffreys
4 months ago

I think this is being sent out to vulnerable patients. I am expecting one as I have been taking Mavenclad which effects while blood cells, putting me at risk of infection.


amala
4 months ago

I haven’t received one. ☹️


chezy17
4 months ago

I’ve finished my Mavenclad, my Lymphocytes have risen to 1.21 so the nurse says my chances of beating it are the same as everyone else? 🤔


cameron
4 months ago

I think we’re all going to get one but I’m guessing it’s being administered via local healthcare trusts so the timing is likely to be variable. On the Barts MS site, Prof G says it’s the same letter going to all immuno-compromised patients and that its alarmist tone needs to be interpreted carefully i.e. it’s a broad brush piece of information and doesn’t take into account that MS drugs do not all carry the same risk.


cameron
4 months ago

And further to that, it applies to other conditions e.g. cancer, and transplant patients.


wendyhills
4 months ago

I had a phone call from my MS nurse I’m 3 weeks after taking yr2 of mavenclad so I imagine at a vulnerable stage. She said to self isolate for 12 weeks and my husband too even though he has no health issues. I know the DMT I’m on puts me in the vulnerable range but not sure if I will get a letter from the nhs to shield. I hope I don’t if I’m honest for my mental health. I’ve been what effectively is shielding myself since last week I just wonder if the phone call is all I will get as I know a lot of people have had text messages from the nhs.


wjgregg
4 months ago

I haven’t had one yet. I’m on Tysabri (next infusion due next week). My family and I are isolating at home.


amala
4 months ago

@chezy17 when did you finish it? My first blood report says it’s 1.2. Is it going to go down or up afterwards?


cameron
4 months ago

@wendyhills – do go on the Barts MS site and find Professor Giovannoni’s post on the letter. It explains it, gives it a context and I’m sure it will remove your anxiety. He was on the advisory panel so you can believe what he says. It’s a couple of days old now so might take a search under ‘Covid-19’ to bring it up


dominics
4 months ago

Y’all might want to check out the links below. Overall, unless you are in 6-12 month window – it depends who you ask – of alemtuzumab (Lentrada) or HSCT (stem cells) it is highly unlikely that you will be put at greater risk from your DMT. Worrying too much is likely to stress your system far more than any potential. The worry and stress are a real thing to your body – a theoretical risk from a DMT is only theoretical.

We owe it to ourselves to stay mentally healthy as that directly affects our physical well-being now. Don’t hurt yourself by worrying about a potential. The worry is the no no 😉

Mrs S teaches Mindfulness in schools, I have done a lot of yoga in the past. Learning to get on top of one’s own runaway brain is a key skill. Not every threat is external.

What is a safe lymphocyte count – http://tiny.cc/lymphCt
Cladribine/Mavenclad on row 10 – http://tiny.cc/CladRow10


laura-forde
4 months ago

Hi thanks for your replies. I’m in Scotland so the NHS has a slightly different approach to things. I’m guessing NHS England has lumped everyone together. It’s not going to change anything there’s just so much contradictory messages is all.


chezy17
4 months ago

I finished mine in September, my first one was 1.18 and then at 6 month post Mavenclad it was 1.21. Not a huge jump but I don’t really understand it all and how quickly it’s meant to rise. I’ve finished my treatment now though. 😊


dingbanks
4 months ago

I’m on tysabri, my GP isn’t sending a letter neither is MS unit. My MS unit, charing cross, just cancelled my next infusion 2nd april – with maybe we can wait 2 months – see you in may..


clare80
4 months ago

Hi @laura-forde
My last round of lemtrada was 2.5 years ago. My lymphocytes on Monday’s monthly blood test were up to 1.69 (normal range apparently 1.1-4.5). I’d spoken to my MS nurse a couple of weeks ago and was told my history and previous blood results meant risk level was no different to anyone else. All in line with comments from @dominics
But after Boris put us all in the vulnerable box last Monday I checked in and was told advice had changed and that I needed to work from home.
I got the dreaded letter today, it had been sent from my GP surgery.
I had spent a while trying to get my head around all the conflicting advice and I’m slightly miffed to have been categorised as amongst the weakest in the herd as I don’t think that is correct. But it doesn’t matter. Self isolation for 12 weeks it is.
Ultimately to stop this thing, they need more people to self isolate. I can do that – I’m lucky, I have space to work at home and a garden to get fresh air, no kids to worry about and fab remote friends and family.
Having sulked for a bit this morning I realised it is not actually about me, it’s about not being selfish. I’d hate to catch this, find I’m not as tough as I thought and take a ventilator from someone else.
I still reserve the right to be grumpy and fed up over the next 12 weeks and you might see me on here more than usual, but I’ve got through worse and it will pass, everything does.
Other people are putting in a lot of effort to save lives, if all I’ve got to do is stay at home, I can manage that.
Whichever DMT you are on, whether you get a letter or not, I would encourage you to stay at home as much as you can. The sooner we all do that and stop the spread of the virus, the quicker life can get back to normal.
Stay strong, we can do this!


laura-forde
4 months ago

I am in day 12 of isolation not planning on going anywhere 😂.


steven
4 months ago

Hello everyone,
I had my second course of Mavenclad last July. In September my Lymphocyte count was at 0.83. My MS nurse says they should be higher by now so my immune system should be OK but because my last blood test for this was 6 months ago I’m not sure how safe my immune system is if I were to get Covid19. I’ve not had a letter in the post and I am still going to work as I’m classed as a key worker. All my work is outside as I’m a telecoms engineer so not having any contact with people. Not sure if I should just not go to work or wait for a letter? Thoughts anyone….


ruggermad
4 months ago

I got a text – but i think so did thousands of others……..


dvtrv
3 months ago

After talking to an MS nurse I was informed that I was an oversight by my neurologist Dr Talbot and it was a good job I checked.

I subsequently received a latter stating my lymphocyte count was low at 0.8 (1-4) my second of Mavenclad was February 2020.

Now, my wife who classed a key worker, when she returns after maternity leave, is required to see a letter stating I’m vulnerable. One letter states I’ve increased risk of infection. Another letter also received stating “in your case. Evidence to you is to reduce even more contact with people. For people, such as you at the greater risk, shielding, also called self isolating is the safest option.

Is this the latter 1.5 million people received?

I’ve been social distancing since end of March by my own admission.

I’m getting fed up n confused, just a tad. I’m the youngest of three siblings n have problems feeling I’ve been left out, he he.

Anybody idea on this?

Oh, hi everybody hope we’re all doing as well as…… under the……


wjgregg
3 months ago

I got my letter two days ago. It does seem to be in “standard” form. By virtue of the earlier helpful posts, I am not alarmed.

Hopefully, I will be able to se it to finally get a delivery from Tesco since every available slot is ordinarily gone for three weeks…


wjgregg
3 months ago

“use it”…


dvtrv
3 months ago

I tried Sainsbury’s and my email address not allowed


dvtrv
3 months ago

@wjgregg

Who’s the letter from?


wjgregg
3 months ago

Dear @dvtrv,

It’s from the N.H.S. I had to register with the government first. Check out http://www.gov.uk/coronavirus. That’s the web address on a text message that I got back. I can’t remember where I first registered, but that website may well be it. I believe that they then contact your G.P. That’s how it worked for me.

Good luck, and best wishes.

Stay safe.

Jon


dvtrv
3 months ago

🤔 I did complete something n it said I won’t get a response n to check with GP. They seem to have as much of an idea than do.

Thank you


gilliland-hair
3 months ago

@dvtrv I would be s key worker but my count is 0.7 so I got a txt and a letter. My MS nurse says my lymphocytes are too low for me to go into work but if they go up to 0.8 then I can. I am having monthly blood tests and crossing my fingers.


dvtrv
3 months ago

@gililand-hair

Whilst not expecting all GP’s, if any, to be aware of the meds MS sufferers take, it does nag at me when I’m asked to spell Mavenclad.

Anyhoot.

Really appreciate your message thank you. Interesting.

I’m now waiting for a call from an MS nurse, but to be quite honest it feels like flogging a dead horse. Don’t take that The wrong way please I do understand and appreciate everything that’s going on and how far stretched everyone is. Think I’m a little scared and feeling more alone at mo.

I appreciate what time we’re currently going through but it’s annoying me now.

Ive know a lad since primary school and he’s had MS since early 20’s n he’s not in a good state whatsoever and he didn’t receive a letter either.

Thing is, if my wife’s employer doesn’t accept what letters I have received as acceptable for her to be able to take paid leave I’m goosed. We’ve got 2 kids under 4 n I’m unable to look after them alone.

Maybe a letter from an MS nurse will suffice.

Thanks and apologies as think I’m ranting here, but if I can’t let off steam then where can I.

If I remember I’ll be sure to update this thread with how I’ve got on.

Good luck everyone, all the best and please take care.


lilypalooza
3 months ago

@dvtrv I just received my letter this morning from my GP…thought I might have got away with it (am on Brabio)…feels like lockdown will never end 😱 Might be worth a call to them again? Otherwise definitely contact your MS nurse they should be able to help.

Even having registered on the gov site 5 weeks ago I haven’t been able to get a delivery slot 😩 My poor husband is doing our shop once every 10 days but is paranoid about passing something on – we’re following all the guidelines and disinfecting everything, he comes in and goes straight for a shower and his clothes get washed but still…


dvtrv
3 months ago

@lilypalooza

Don’t blame him, scary isn’t it.

Got call and explained what I was after and was told I’d get a call about a letter 🤞 let’s hope so


fairies000
3 months ago

I am on medication Plegridy which is not a immuno suppressant drug but from my g.p I have received a letter. After speaking with the ms team at my local hosp they have informed me that I do not need to be shielded.
I cannot stay in for 12 weeks and not go out for walks. Mainly for my mental health.


laura-forde
3 months ago

I eventually found out the medics don’t think people on Tecfidera need to be shielded after a phone call to my GP . So no letter from me. Still only going out for the occasional walk though (I’m in a fairly rural place so no weaving in the crowds to worry about)

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