Isolate? Anyone else had a letter for a rheumatoid phone appointment?

[Annemarie24]

I got a letter dated 19th for a telephone apoinmnet on Friday , i dint request one, a little background info I'm on steroids 10 mg daily for past 3 weeks/ hydroxchlorin/Vitamin d/iron/folic acid/diclofenac had 1 steroid injection in Feb im newly diagnoised so my rheumo is not under control yet , I'm thinking the phone calls to tell me to isolate , any one else had them ?

[jenn72]

i had a call from the rheumatologist today - if your taking prednisolone as far as i know this is one of the risk factors so they want you to self isolate. if you have any other health conditions on top of this pushes us up to higher risk. im on one anti TNF therapy so im moderate. If your disease is well controlled this takes you down to moderate too. ive been advised to keep social distance. hope this makes sense and hope your ok

[193639 in reply to jenn72]

Sorry Jen I do not agree that you are of a moderate risk. Your immune system is being suppressed, like I said to Annemarie24 even though your therapy is working and glad to hear that you are still at risk therefore how can you measure, low, moderate or anything else. People who have no underlying health problems with perfectly healthy immune systems are catching Covid-19 and are struggling with some sadly dying.

Take care

193639

[jenn72 in reply to 193639]

im getting ready to go into hospital now i will be in an office - ive got to say im really anxious but have been told i have to go. wonder if the advice for nhs staff especially nurses is abit like being enlisted? as i got a letter from the nmc basically saying this is our duty. which i agree but what about my kid xx im quite scared sorry to hijack this post btw xx

[193639 in reply to jenn72]

Hi Jenn72,

I’m sorry but I’d be contacting my GP regarding being told to return to work, you have Duty of care to yourself and your child. Your no good to anyone (God forbid) unwell or worse.

[helixhelix]

If you are newly diagnosed you should get a follow up appointment fairly soon after your first one to check how you are doing. So it could merely be routine, but swapped to telephone rather than physical appt.

[Fergie432]

I had a phone call from Rheumatoid Doctor yesterday, this was in place of a scheduled hospital appointment later in the week. I take Methotrexate and was advised to continue taking my weekly dose. Also told to deffo self isolate, not to be in contact with anyone, apart from other member of the house, and if need be, can only go out as far as my garden.

[KittyJ in reply to Fergie432]

This is interesting are you taking other immunosuppressives and have comorbidities? If not that sounds like shielding, not what we were told to do in the last couple of days. Seems everyone’s being told different as usual. 😕

[Fergie432 in reply to KittyJ]

Just taking Methotrexate and meloxicam. My immune system not good, always catching viruses.

[KittyJ in reply to Fergie432]

Hmm, strange, I’m on mtx and a biologic but I’m in the moderate risk group. Confusing.

[193639 in reply to KittyJ]

Hi KittyJ,

If you don’t mind me asking, who told you that your moderate? How is that measured? According to englandcoronavirus NHS chart page 6 your are H and I which is high and at increased risk because of your medication. As I said before healthy young people with no underlying health conditions are sadly dying, I’m pretty sure they were low to moderate risk. We all need guidance and in my opinion Kitty we are not moderate.

I think Fergie432’s GP is right in his/her assessment to isolate, remember everyone has individual circumstances and this cannot be measured L, M or H, for that matter, you are at an increased risk full stop.

[KittyJ in reply to 193639]

Yes we are at an increased risk because of the meds, I’m not disagreeing with that but the chart being used to send the letters out puts me at moderate risk even though I’m on biologics and mtx (because I am not 70+ and don’t have any comorbidities) This is the link with the risk factor and the letter being sent to people that need to shield. I won’t be one of them being told to shield but I will be self isolating.

rheumatology.org.uk/news-po...

[KittyJ in reply to 193639]

Do you have a link please as I can’t find the chart you are talking about ?

[193639 in reply to KittyJ]

Hi K,

www.england.nhs.uk/coronavi...

[listellor]

yes i got the text message today . thought that was going to happen

[KittyJ in reply to listellor]

Everyone is getting a text saying stay in, there’s a letter for those who should shield. This texting everyone is confusing 😕

[Aliceeliza]

No letter yet but spoke to Consultant this morning. I'm in the 'shielded' group according to him due to age, and following a recent diagnosis I am on prednisone and methotrexate. Glad to have it clarified because I'm not looking forward to not going out for 12 weeks but I am staying at home!!!!

[Fifi2]

I’m confused

I’m on rituximab infusions and leflunomide has a steroid injection last week .

I’ve not received a txt or letter but I know what I shall be doing just need some confirmation for work

Anybody else not had txt or letter ?

[Monkeysmum in reply to Fifi2]

Hi FiFi, same here I’ve not had either yet. I think the text that is being sent out is going out to everyone in the Uk eventually - lots of my daughters friends (who are perfectly healthy teenagers)have had a text today, but no one in our household has - perhaps they are sending them out one mobile network at a time.

As for the letters I believe they can land any time up to the end of the week, probably depends how quickly our Rheumy departments get through rating us all!

[Fifi2 in reply to Monkeysmum]

It must be an enormous strain

[KittyJ in reply to Fifi2]

I’ve not had either.

[Fifi2 in reply to KittyJ]

Guess we all know what to do but would like something formal for work .

[193639]

Hi Ajay575,

I 100% agree with you and hope others take heed. I am awaiting a letter from the Scottish NHS and would like to hear if anyone has received a letter or message. I phoned my Rheumatology clinic today and was advised that this was the Government’s(in my case the Scottish Government) responsibility, however the literature comes from the NHS website.

I am somewhat confused by it all. The Government provide guidance through our NHS in relation to being in a high risk bracket and people still haven’t received any correspondence regarding a letter, hope it’s better down south.

193639

[bunnycaramel]

I have a rheumatology appointment next week. Haven’t heard anything yet but expecting it to be cancelled like my respiratory appointment this week.

[Harrypotter2930]

Hi Annemarie i got a letter to inform me that my consultant will be ringing me on Monday instead of me going to her for my appointment. I am on metoject 15mg weekly injection and biological abatacept 125 mg weekly injections. Hope this helps xx