Tocilizumab

[Vonnie10]

Hi is tocilizumab in the sheilding group I did put a post up before about this but I cant find it my post only go down so far and then they finish

Thanks in advance

[allanah]

I would say you have to be careful and in your area I would think as it lowers your immune system I would " isolate" as they call it now. Add on any other health conditions, steroids, other health conditions.

I think all the old charts are out of the window now as the government are meant to get on touch with the "tier three " people who should be recommend to shield. Your GP should recommend your need so you can discuss with work etc.

[Vonnie10 in reply to allanah]

Hi on the.steroid shot as well 5 weeks ago so confusing but I do take care anyway..but is ritx still.in your body upto 12 months I has that back in jan..? It's very open we arent on top of each other the houses are spread out were I am generally a older population and very sensible .. I retired 18 months ago al thankfully.was able to go from work.x

[Neonkittie17]

You’re still likely be classed as vulnerable .. as described more specifically in the Gov.uk document due to your RA med(s) but those don’t apply for shielding now. I don’t think those charts where RA meds score as 1 or 2 apply exist now since the guidance document has been revised this month. I can’t see them anymore on that site. However as we all know .. that doesn’t make you any less vulnerable because the government changed their guidance! .. so it’s as Allanah has said.

Sweet little dog 💗 Hope she’s adjusted with her teeth. X

[Vonnie10 in reply to Neonkittie17]

I haven't had any letter to.say so but then again it took ages to get a letter last time...her tongue drops to one side now hope.it resolves her gums may still be healing . She is so.precious to me.x

[Neonkittie17 in reply to Vonnie10]

I didn’t get a letter as a different rheumy nurse messed it up for me and wouldn’t put me on score 3 so I had to get a consultant to tell the admin people to do so and amend my records. My doc knows now so I’m on their list.

I think all tier3 clinically vulnerable people will be contacted but have no idea how they plan to do so this time.

I have had several rounds of Rtx since early 2014. I understand that it can be detected in some people’s serum from between 3 - 6 months after your treatment .. but we are all different.

The steroid “shots” weren’t classed as a score for the “clinically extremely vulnerable” points/score before and it was oral steroids over 10mg daily I think that were/are deemed to be adding into the vulnerability as such. Allanah will know that re oral Pred. (I haven’t been on them since 2016.)

Aww yes there’s no little doggy teeth to hold her tongue in now. She will adapt with her eating and still be happy I’m sure. She’s gorgeous. 💗 X

[helixhelix]

Age, oral steroids and obesity are the big risks. Followed by heart and lung conditions, RA and the other drugs we take aren’t seen to be as big s risk now. Still be careful of course, but we can worry less.

If you click on your name you will find your previous posts. Here

healthunlocked.com/nras/pos...

[Vonnie10 in reply to helixhelix]

Tha is hel x

[allanah]

I'm just going to be very careful. Still getting deliveries and seeing the family in my garden with fire pits going and blankies etc ! Xmas is gonna be so strange

[beeckey]

I was on it during lock down and i was not shielding but i did not go out much so i would say just be carful.Oh god Christmas hope by then things will change.I always have 13 so it would just be me and hubby I would miss all my grandchildren.

[Chrisellie]

Yes you are or should be in the shielded group if you are having any Tocilizumab treatment.

Please contact your doctor or rheumy if you weren’t on it previously and was on Tocilizumab during the last shielding lockdown .

This would be if you were on the treatment when we were all shielding.

If new then take a lot of care and precautions during this epidemic and make sure you would be on the shielded group if we have to shield again.

Take lots of care.

[Mouseling]

Hi I am on Tocilizumab and I have weekly injections. Are you on the infusion?

My Rheumatology department have done a chart showing the risk levels for different R A medications and other factors. This varies depending on :

1. The type of medication you are on

2. How controlled your disease activity

is

3. If you have any comorbidities

4. The combination of medications you are taking

For my treatment plan I am only taking Tocilizumab and my disease activity is described as in chemical remission. I am therefore a moderate risk for infection from Covid-19.

If for example

I was taking Tocilizumab, methotrexate, I had a comorbiditie and not well controlled RA symptoms I would be on a much higher level of risk

Another example

If a person was taking sulpharalazine or Hydroxichloriquine (excuse the spellings! ) the medication on its own would be classed as low risk.

I did not have a letter about shielding at the beginning of lockdown. I self isolated and my family took more precautions.

I was able to walk my dogs remotely.. Plenty of fields around my home. At the beginning of May I had a call to inform me I should be Shielding and advised not to go for walks! I was then able to access supermarket deliveries.

When the restrictions lifted I was able to see some friends and more family. However I have been extremely careful to use precautions: social distance, masks, hygiene etc. We were able to have a self catering week away on the coast which was wonderful. I have had one visit to a pub in September and been in about half a dozen shops, no supermarkets. My husband is at work again and children at school.

My dogs are a lifeline and my family.

I don't know about other people but in some ways I wonder if I have adapted /coped better with isolation and restrictions because previous to starting Tocilizumab and the arrival of covid-19 I had some years of bad RA symptoms and trying different drugs to control it. Therefore my life was pretty much altered, a roller coaster of coping, adapting, plans changing etc etc.

We are all in different situations and circumstances with RA and its impacts.

Covid-19 has brought another massive challenge. My heart goes out to everyone coping with their health conditions and the worry and uncertainty from the virus. Best wishes ❤

[pat66 in reply to Mouseling]

Sorry to seem late to the party but can I ask if you are referring to sheilding here in the UK as I was unaware of it starting again?

[Mouseling in reply to pat66]

Hi as far as I am aware there isn't new advice for shielding in the UK at the moment. I am in the UK 😊