This morning I was contacted to be told to shield (in teir 4 area). It said I was on the clinically extremely vulnerable list and the advice was the same as in the November lockdown - don’t go to work if you can’t work from home.
In November though I wasn’t contacted and continued to work (I’m a teacher). I didn’t realise I would be on the list.
Just interested to hear if anyone else has been contacted this time who wasn’t before. I have no other health conditions and take tecfidera.
Hi, I was on tecfidera & received the letter to shield in early April. I was told it was because tec is an immunosuppressant and at that time my lymphocyte count was under 0.9. I had to shield again in Nov / Dec as my lymphocyte count was below 0.7. It’s coming up now and I plan to restart it. Check with your MS nurse if you aren’t sure. I don’t want my post to make you think you’ve got a problem with your lymphocyte count! I was told MS clinics had different cut off points in terms of white blood cell counts as to who they sent shielding letters to that were on immunosuppressant meds. Hope this reassures you.
Contacted the nurse but she said I don’t have to and lots of people have been told to shield in error. She also said she’s on leave so I’m not sure if she’s actually checked the blood results. Not sure what to think now.
That’s frustrating! When did you last have your bloods done, as they should have flagged it then if they had a concern? If it was me, I wouldn’t just accept that lots of letters have been sent in error. Yours might have been, but it might not. I’d want to know my results. Could you contact her again and ask if she’s checked your results? It’s very anxiety provoking. My MS nurses have been great and contacted me every 4 weeks after my blood results are in to let me know my lymphocyte count.
Had the bloods done last week. I have no idea who to ask for the results and she’s made it clear she’s on leave so I can’t really contact her again. I doubt she’s actually looked at the results from home and I expect she’s just going off the general, just cause you have ms doesn’t mean you need to shield guidance.
It is really frustrating! I’ve received a text message now too telling me to shield from my local council so I’m not going to just accept they’ve got it wrong until I get an official message saying that. My school had several cases of Covid last term so if I work I’m very likely to be exposed. At least I have the Xmas holidays to try and get to the bottom of it…another fun job!
In my humble opinion, you are doing the right thing, especially given your job and the fact you are in tier 4. If it was me, I’d leave another message stating you are going to follow the advice to shield until you know your blood results are ok. My clinic didn’t have anything to do with the letters going out back in April. When I rang & asked, they advised me to be careful (but not shield), then I found out about my lymphocyte count & did shield, hence I’m cautious.
Ok, maybe it is just sent out to all those on tecfidera then. I am going to take the opportunity to shield as I now have it and to be honest given the current situation it’s what I feel most comfortable doing anyway.
were you told about your lymphocyte count or did you have to ask?
I think im going to wait until after Xmas then do as you suggest, contact to say I’m shielding until I’m told my blood results. Hopefully she’ll be back from leave then and able to check. I tried ringing the hospital earlier but it’s hopeless. As I’m not working until next term now anyway it won’t change what I do for the next week or so either way. Just giving me a lot of anxiety I could do without!
Your first message was a bit of a jolt. I am also on Tecfidera and relatively unconcered. Bloods middling. So sounds like a false alarm. People trying to get things before the Christmas holiday. Stay safe, try to stay happy.
Hi, I think you are doing the right thing to shield until they can clarify further. I know of people on tecfidera that had a shielding letter and others that didn’t.
I asked about my lymphocyte count. Unusually it was ok for 6mths, but then started dipping & not coming back up. It dropped again and again over 6 months, then I had to stop the meds. Otherwise, it really suited me.
I totally understand re your anxiety! It is such a good drug, convenient & effective, hence wanting to try it again, with the clinics agreement as I’m told people can react differently 2nd time round.
PM me if you want to discuss further. I don’t profess to be an expert in MS as I’ve only been diagnosed just over a year, but I’ve been relapse free since diagnosis but appreciate it’s early days!
I know different teams apply different thresholds on lymphocyte levels. Didn’t have a talk with my MS Nurse after my last bloods so I am happy to assume my level has stayed the same or gone up. From what I have seen overall Tecfidera is safe compared to some of the others. I am aware others need her time more than I do.
I don’t want to catch COVID, but getting out and about in a careful way will help both my physical and mental health. I live in a relatively safe tier 2 area adjacent to a tier 1 area. I have been impressed how well most businesses have implemented the regulations. I do stick to the rules, but we have done what we can when we can.
I felt nervous coming out of the first lockdown and still find crowded places and shops challenging. I have being trying to enjoy my abilities while I still have them and feel if I hadn’t taken them I would have felt I’d lost a year. I am aware that if I was further into my journey, I would probably be more cautious.
I’m also take Tec, I have a strong lympho count and no other health issues. I have had no shielding letters at all since the start. As I understand it Tec is not an immunosuppressant, I think there’s a piece on this site from the ABN saying as much.
Hi retro, thanks for posting the article. My clinic told me tec acts as an immunosuppressant for the first few months someone takes it, then typically the immune system picks up (as yours did - I’m jealous)!! My clinic told me they’d looked at the lymphocyte counts of all those on tec. Those with counts of around 0.8, not 0:9 as I said earlier (slip of my finger), were asked to shield as the meds were having an immunosuppressant effect. Apols if I’ve used the wrong lingo, I’m certainly not an expert, but I was k en to share what I was told. Hope this post clarifies that.
Thanks so much everyone for your responses. It certainly seems like shielding is not a given just cause you’re on tec then. So I suspect the nurse is probably right. Being in teir 4 though we’re basically shielding by default at the moment anyway! So I’m going to wait until after Xmas and then try and chase up the blood results for clarification before the start of term. Feel a bit calmer about it now - it was a shock to wake up to that email this morning! As far as I was aware until today tec didn’t suppress the immune system in anyone.
Thank you - I searched this morning on here for info but didn’t come across this page. It’s put my mind a rest somewhat. Fingers crossed bloods are ok and just an admin error somewhere!
Hi, no need to apologise, no harm done. My blood tests have been getting done 6 monthly these days since lockdown. Can’t remember now but I think my lympho count was 2.0 last time I enquired months ago. I’ve been taking Tec for nearly 2 years and been relapse free for 30 months or so. Stay safe and have a great Xmas.
Hi Charl84, I too am on Tec (am about to stop due to low lymphocytes) and was told to shield back in June and again in November (tier 3) not because I was on Tec but because of my low lymphocytes (caused by Tec) I was told by my MS nurse that anybody who’s levels were 0.8 or below were being told to shield as they were at an increased risk if they were to contract covid Until my lymphocytes started to drop I too was not aware of my levels either but as soon as they did I was moved to monthly bloods and my nurse kept me up to speed. Hopefully if your lymphocytes were low they would have been flagged and you would have been moved to more regular testing so you would know but it won’t do you any harm to err on the side of caution until you know for sure .