Should we be on the critical risk list when taking benepali/etanacept?

[AM2793]

I'm on benapali for RA and was expecting a letter saying I was one of the 'vulnerable' but haven't had one. It is an immunosuppressive though? Has anyone else on benapali had the letter?

[samgtfc]

I'm also on Benapali (50mg) and methotrexate tablets and not received a letter - thankfully bloods and everything is under control at the moment so that's probably why no letter

[allanah]

Look on my post today, Victoria's pinned posts on home page, nras.org.uk , loads of info and discussion in today's posts xxxx

[julie01]

I received my letter today from Kings MSK from Queen Mary’s Hospital Sidcup I am on benapali and metojet methotrexate and I really didn’t want to get the letter, it has made me feel vulnerable and quite scared even though I haven’t really been out. And when I have, I have made sure people haven’t be too close, telling them to move away from me.

Keep safe everyone

Julie x

[helixhelix]

There are a number of different factors, age and other diseases for example. If you look at this assessment chart two drugs alone is not considered to be high risk.

rheumatology.org.uk/Portals...

There are reports also saying that not all letters have been sent yet anyway.

[HamHammy in reply to helixhelix]

That chart is helpful. I am on benepali and naproxen with severe RA. Had 4 joint replacement ops by age of 49. Trying to work out my possible rating..would you think it's 2?

[helixhelix in reply to HamHammy]

also factor in age, smoking status, weight, other diseases, general health and so on. The big issue is whether yiu have to go to work or not of course.

[HappykindaGal in reply to HamHammy]

Probably 2. The joint replacements won’t have an affect on the risk level I wouldn’t have thought. I heard a doc on tv the other day talking about risk levels in heart patients. Heart failure was high risk, transplant very high risk, bypass and stents, medium risk. Interesting

[KittyJ]

I"m on benepali and others but I'm not expecting a letter. Check out hh's link as that will give you all the information you need😊

[Hidden]

I’m on entanercept and methotrexate injections. I’ve had an email from my clinic nurse telling me I’m vulnerable and to self isolate for the duration. ( yesterday) she said I will receive a letter but they were still being processed. So much conflicting information

[HappykindaGal]

No. I’m on benepali and methotrexate and rheumatoid nurse said I’m medium risk. Probably as I have no other health issues and inflammation is under control. However, my colleague who has crohns and on same drug is one of the 1.5 million at very high risk as her crohns is flaring and she has a temperature. It looks as if it depends on how symptomatic we are is one of the markers that define the risk level.

[AM2793]

Thanks for all the replies, looks like just benapali is a 1/3 although I'm asthmatic as well which makes me a 2/3. Currently have a temp though so might be too late anyway...

[Bellaitalia]

I am on Benepali enteracept but have not yet received a letter

[jane1976]

Hi, I’m on Benapali injections & received the letter from RA department fromHull Royal Infirmary last week! Saying I’m at severe risk of contracting the Coronavirus & to stay at home at all times & avoid face to face contact for 12 weeks from the date of the letter.

[Molly333 in reply to jane1976]

Hi Jane, are you just on Benepali? And do you have any other health issues other than RA? Hope you don't mind me asking but I'm also on Benepali but probably won't receive a letter as I'm in Wales.

[jane1976 in reply to Molly333]

Hi Molly, I have asthma, but it is well controlled just with preventer inhaler. I’m classed as in remission for Type 2 diabetes, so that’s ok. I do believe that it’s down to the Benapali injections I’m on. The letter I got had a chart & that implied it was down to the injection I’m on. Good luck . Take care xx

[Molly333 in reply to jane1976]

Thank you Jane. That's very helpful and kind of you to reply. X

[jane1976 in reply to Molly333]

Hi again, you’re welcome! I hope we can all stay safe!! Xx

[Bluebird335]

I am also on Benepali and methotrexate. I received the letter yesterday from my hospital dept. I expect that they are really busy and it takes time. They have also indicated that they may do the appointments by phone for a while to keep us away from the virus. Well done.

Don't worry, they are only confirming what we already knew. I'm concentrating on exercise, crafts and hobbies, FaceTime with friends and family, gardening, and have offered my services as a volunteer, I can't go out but I can phone someone if they need a little support. Take care!

[Calph]

Yes see my teoky

[Nyreedw]

I'm on Humira and mtx and I got one from my Rheumatologist. You need to phone your GP.

[Wigelia]

I am on methotrexate and Benepali which would make my score 2, but I am also on 5.5 mg of prednisolone which takes my score to 4. The British Society for Rheumatology chart makes everything very clear. I have not had a letter yet but I have been self isolating anyway.