Need help!

[Madmax6689]

Hi I have lupus currently on Mycophenolate 1500mg twice daily and also take amlodipine 10mg daily for hypertension. I work as a customer service assistant in a food shop. I have not received a letter to tell me to self shield. I a very worried about going to work and very confused about the information out there. I have to have the flu and pneumonia vaccine as I’m at risk but don’t seem to be at risk from the coronavirus. What do you think I should do?

[happytulip]

You have SLE, hypertension and are on immune supression meds. That should (i think) put you in the isolation catagory according to the Rheumatology guidelines.

There are plenty of posts about it if you scroll down.

You should not be at work. Contact your GP for advice.

[Madmax6689 in reply to happytulip]

Hi I’ve contacted my GP and she says I’m not at risk really don’t know what to do!

[jane1964 in reply to Madmax6689]

If you possibly can I would check with your rheumatology department maybe leave a message on their answer phone.I think the advice online has been very confusing and different sources I've found contradictory but your rheumatology team know you best I would tell them in your message about your job and your concerns.

I hope you and all of us can get some clearer advice soon.

[happytulip in reply to jane1964]

If you go to Paul Howard's posts, he has helpfully posted the updated guidelines on 25/03/2020. Sorry, I am terrible at technology otherwise I would post a link. But the info is all there.

Keep well

[jane1964 in reply to happytulip]

I will have a look thank you.

[happytulip in reply to Madmax6689]

Sorry but your GP is talking nonsense. You've had a letter telling you that you are at risk and if you check the guidelines that have been published by the Royal Society of Rheumatologists you meet the catagory.

Sadly, many GPs don't have alot of knowledge when it comes to auto-immune disease. And many people feel that the auto-immune community has been ignored in the risk catagories.

But you've had a letter when many who need it haven't yet received it.

You are most definitely at risk.

Check the guidelines that Paul Howard and many others have posted and stay safe.

[happytulip in reply to Madmax6689]

Please see my reply below. It got caught up in the thread with Jane. Take care of yourself

[jeanette60]

Hi. I'm in a similar situation as a key worker .I'm on rituximab for ra/lupus. I have told my employer I am at increased risk and they say they will do what they can to protect me. Speak to your employer about your concerns. Stay safe.

[Krazykat26]

Hi Madmax 🤗

It's sooo confusing isn't it? All I can do is tell u what's happened with me this week.

I have SCLE so only organ involvement is my skin..other organs ok..I'm on hydroxychloroquine, methotrexate,prednisolone 10mgs daily, Amlodipine 5mgs daily..n some other meds!! I have the flu jab every year n I had the pneumonia jab at the start of this year!!

I had a phonecall from my GP this week n I asked her about my risk..she told me that I'm very high risk n should be self isolating or shielding coz of the immunosuppressant (MTX)..n hydroxy.

I haven't had a text or letter yet but I'm also not working so I understand your dilemma!

However I think that if I was working I would stop n then seek advice from specialist if GP is unable to tell u what to do..it's not worth the risk..u have SLE so u must look after yourself in these dangerous times!!

Keep yourself safe 😽😽xx