Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


lea_jeffreys
1 week 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
1 week ago

I haven’t received one. ☹️


chezy17
1 week 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
1 week 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
1 week ago

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


wendyhills
1 week 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
1 week 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
1 week 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
1 week 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
1 week 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
1 week 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
1 week 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
1 week 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
1 week 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
1 week ago

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


steven
1 week 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
1 week ago

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

Join Shift.ms to reply to this post.

Become part of the community so you can chat, compare and learn from other MSers.