Hi all x I’m 45 & have ankylosing spondylitis,I self inject once a week with benapali & im not sure if I should be self isolating?
I’m not sure but does anyone know if the benapali is an immuno suppressant or immune modifier?
I’m assumed I should be self isolating and have been but I’m unsure if this is completely necessary?
I’m quite new to this family community xx
Regards
Sa
I think because we all have a low immune system we should all be self isolating.Best wishes.
Yes I was thinking this but just wanted clarity Xx thank you for your reply xx
If you look to the right of your screen you will see pinned posts from NRAS staff. They give the info you need to work out how vulnerable you are. If you have no other factors just taking one immune suppressing drug is most like to fall into the social distancing or strict social distancing categories
Thank you for your info! This I think makes sense for me and will prob fall into the category of social distancing xx
This is the scoring system used by the rheumatologist to work out which category you fall in. nras.org.uk/data/files/COVI...
There is also lots of useful information here.
nras.org.uk/frequently-aske...
Hope this helps.
Hi Redisluck,
As Helix says if it’s just the one immune surpressing drug such as Benepali then that scores 1 in the chart.
For example I inject Benepali once a week and take Hydroxychloroquine which scores 0 for moderate to severe RA.
My consultant phoned me for a telephone consultation last Tuesday and said I should be socially distancing but not self isolating.
On a personal level if you feel more comfortable self isolating then it’s up to you but it would have other effects on your well being so if you are actually doing ok currently health wise. Then it’s not necessary.
I’m a key worker and also a carer for a 93 year old so self isolation is not an option for me.
Good luck out there and the way we are all behaving now is crucial for the coming month.
All the best.
M x
Hi,
Are you on the Ankylosing Spndylitis Support Group UK page on Facebook? I also have AS, on cimzia, age 46. I've had no letter and didn't expect one going by the rheumatology chart but many people on the AS FB page are saying they have and posting pics of them - even though they are in the same position as we are: 1 biologic, no other conditions, under 70 etc. so scoring just 1 on the rheumatology chart. They are definitely the letters telling them they are in the vulnerable group and must not leave their house for 12 weeks. People are still receiving them this week, past the 29th March deadline, so I am erring on the side of caution: I have only been out to walk the dog in deserted fields once a day now for about 2 weeks and not left the house any other time.
It looks very much from comments on the site that this is not a particularly well co-ordinated effort - some people have received the letter from their GP, some from their rheumatology department, some from NHS England. Some received texts as well, some didn't. All in all, it's still as clear as mud!
NASS have updated their advice to "do not leave your house as a precaution" under the moderate risk category (i.e. our risk):
nass.co.uk/managing-my-as/c...
Previously it had been "enhanced social distancing" whatever that means! 10 metres instead of 2 maybe?!
Hope this kind of helps! Take care
Karen
Thank you Karen / that’s the problem isn’t it with all of these conflicting advice from various sources it’s hard to be sure! I’ll just carry on as I have been & just be very careful with social interaction (none😂😂!!) only within my household and walking with one of three of my kiddies xx I’m not on Fb - something I’m wary of & managed to surpass so far xx thank you for your kind reply xx
I think a lot also depends on your lifestyle, where you live and your work. If it is possible for you to carry on fairly normally avoiding close or even any contact with people, with an employer that is making efforts to keep you safe, and you feel comfortable that you are not over-exposing yourself then that’s your decision.
As isolating for 12 weeks is a big ask!
Oh I totally agree, but I know from the FB page that a lot of people do not have very accommodating employers and the absence of a letter or really any definitive guidance (as everything is so contradictory!) is causing real problems for them. I'm fortunate that my husband works from home anyway and I am self employed.
Some of the people on the page are older than me, but still under 70 (although not by much) and are very worried about getting supplies - no letter again is causing them problems. They are maybe not as computer literate as some and don't really understand the need to register on the dedicated website as vulnerable if you have not received a letter.
Lack of information makes people scared - to see that others in your situation are being given the shielding advice when you have none is confusing people and adding to their fears. Someone called the hospital I am under and was told they are not sending any letters at all, yet people under a hospital within the next trust are getting letters. I have wondered if it is rheumatologists being ultra cautious sending letters on their own initiative, but who knows?!
I'm only on benepali and I've had a letter to shield for next 12 weeks, which is not the best when your self employed! Hope that helps!
Hi and welcome, I asked a similar question like yesterday and the response was awesome I am not sure how to copy the link in from those who answered me but if you can find it within them... It should be of much use it was to me. This whole site is amazing I have been here for a few years now lol.
Methotrexate, Social Distancing or Isolation?
Should I have Flu vaccine this year whilst on Biologics?
Self isolate 
No letter 
To shield or not to shield, that is the question?
