Still totally confused

[Froggie70]

As the title says I don’t know what’s going on.

Received no text and no letter. Looking at the guides for Rheumatologists that’s been posted today and previously, SLE is defined as V/VH. My own GP does not want me going out including for blood tests and has given me an additional month of MTX on top of my normal prescription.

Whilst my last blood tests have been ok, both ESR and CRP are elevated and I am getting flares and I’ve been getting quarterly kenalog injections until we decide what additional medication I go on to (reaction to Hydroxychloroquine before). Yet the risk stratification guide shows me as 1 as it’s just one DMARD I’m on, so it’s social distancing for me. I’m off work just now for personal reasons and work don’t have the kit to allow me to work from home. I have no idea what I’m going to do in a couple of weeks when I’m due back.

Sorry for the rant.

[PMRpro]

The level of distancing anyone does is their choice - and there is not that much difference between the recommendations for social distancing now and self-isolation except going to work. Is your work designated as essential?

However, this post explains it very clearly I think. The risk stratification scoring is used IN ADDITION to the designation for your disorder in the BSR Guidelines. Lupus is high/very high risk however you look at it, adding 1 for the methotrexate just makes it higher. These are generalised guides and at base I get just an Increased risk for PMR but add on scores for being on over 10mg/day pred and I become higher risk. If I were 70 I'd become self-isolation/shielding.

In England they are sending out the communications all week - it is a massive undertaking and they can't do them all at once. The instructions are if you haven't heard by the end of the month or you are concerned - contact them and there are links to do that I think. Your GP is also a contact. Be patient of if you can't wait, ring your GP.

[Froggie70 in reply to PMRpro]

Thank you.

[Pandababy]

I’m confused and I’m a nurse!!!!

Apparently there’s been some delay in getting

the categories for the autoimmune conditions sorted as gov omitted them from original guidance for GP letters. However when I read the guidelines like you I’m more than a little perturbed.

I’m on Hydroxychloroquine not an immunosuppressant so looks like I be low risk and therefore just need social distancing so won’t need to stay off work ... but I work in hospital where I will be in direct contact with seriously ill Covid 19 patients . I might not have had any recent flares but I can’t see how running that risk will protect me 😳

I am awaiting a call from my rheumatologist as I want to do what I can but am seriously anxious about having to go into work without the backing of government or specialist advice as to suitable work environments 😢

[Froggie70 in reply to Pandababy]

Thank you, I don’t feel so silly now that you’ve said that. Please take care of yourself.

[PMRpro in reply to Pandababy]

Ah yes - but if you look at the BSR guidelines you see lupus is H/VH risk.

Have you not already filled out a declaration about existing conditions for allocation of duties? Both my daughters have. last week I think - one has had her message and Occy Health sent her off on medical suspension yesterday as soon as they knew she'd had her message. At least she completed her ALS course first! She's an ECP and they were to be put doing frontline screening of ?Covid19 patients. Otherwise she is ED and that is a tad risky too.

My other daughter has spoken to her manager, she should really be shielding but wants to work - so they will do a risk assessment and then find her a low risk location not front of house or maybe in NICU. If they can't they will seek call Hub work or homeworking with a computer. Just ask.

[Pandababy in reply to PMRpro]

Hi

I have not been asked for or even heard of a “declaration of existing conditions” for occupational health other than when I started the role when it was listed under the long term health conditions / disabilities category.

When I phoned so speak to occupational health for advice they also talked about receiving a letter ( I still haven’t)and that I should be guided by this but that there was no need for any additional precautions other than the PPE. Ironically I already have a sickness review with occupational health booked for March 30th to discuss the last 12 months.

My manager was already risk assessing but again waiting for the gov letter in order to determine where I can work based on that advice and has indicated they would look at something then.

Seems there’s a great deal hanging on this letter but when I check the categories I am only going to score in 0-1 which says normal social isolating ... difficult when trying to nurse a patient .

That’s despite having lupus, Sjögrens and asthma ... all well controlled ... although my sickness was high this year as I picked up two nasty viruses over last 12 months which saw me off for two periods of 8 weeks and having to resort to steroids ... just not hospitalised 🤦‍♀️Not seen by rheumatologist but managed by GP.

I’m not sure the scoring criteria based on treatment alone from clinic info is helpful when it fails to look at workplace or visits to GP over a period ... the management now is lead far more by Primary care teams.

🤷‍♀️🤷‍♀️

[PMRpro in reply to Pandababy]

Apparently the goalposts were moved again! So it is taking longer to identify all the rheumatology patients and contact them. When you say your a/i conditions are well controlled, is that with or without medication?

[Paul_Howard Partner LUPUS UK]

Hi Froggie70 ,

I'm sorry to hear that you're confused - I think we all are to be honest! I got sent the BSR risk stratification guidance yesterday and with the help of Dr Wincup I started to get my head around it.

Further on in our article at lupusuk.org.uk/coronavirus/ it states that "those with recent poorly controlled disease / disease flare" should be in the definite increased risk (‘extremely vulnerable’) group.

Not everyone has received a letter from the NHS yet. The NHS coding system couldn't identify everyone so the clinicians are now trying to identify the rest. They hope to contact everyone in this group by 29th March.

I'm going to continue working on our guidance article to try and make it clearer.

[Pandababy in reply to Paul_Howard]

Thanks for this Paul

If this is case I would be in that category ... had two recent events that were attributed to lupus by consultants and one lead to restarting meds however they were stopped due to side effects .

I was due to start methotrexate and steroids but the dermatologist has said if I can cope he would prefer not to do this at this time due to increased risk ... so I am on NO meds at all now 🤦‍♀️

I will hang tight until the letter arrives x

[Froggie70]

Thanks Paul, I really appreciate you coming back to me directly on top of everything else you are doing, well and truly above and beyond. I had a bit of a wobble earlier which led to the rant, I will sit tight and wait for the month end. Thank you again and take care.