Hi everyone,
Following the new guidance from UK officials announced yesterday evening we have now published updates to our article at lupusuk.org.uk/coronavirus
It is important to note that people with lupus are now being advised to self-isolate for a period of 12 weeks.
If anyone is in crisis as a result of these measures, please contact us on 01708 731251 or email headoffice@lupusuk.org.uk and we will do our best to assist.
Does this apply to people with UCTD?
Hi HedgeEnd ,
It is slightly less clear-cut than with SLE. If you would usually be recommended to have the annual flu vaccination then yes, it would apply to you. It would also apply to you if you are currently taking any immunosuppressant medications (a list is in the updated article).
If you do not require immunosuppressant treatment, are not asked to have a flu vaccine and don't have any symptoms that would place you in one of the other high-risk groups then I would encourage you to seek advice from your own medical team.
Hi Paul, thank you for your reply. As the link is currently not working, can you confirm whether Triamcinolone (intramascular)is on this list of medication?
Hi fish80 ,
Please keep trying to refresh the page - you'll get through eventually.
Triamcinolone isn't on the list - I've only included the most common lupus treatments as couldn't be exhaustive.
I'm afraid I'm not familiar with this particular treatment. I know it is a corticosteroid but I don't know whether it is a sufficient dose to cause immunosuppression. I would recommend that you consult your medical team for personalised advice.
Hi, thank u for a quick reply. My medical team have told me to stay away from the hospital, (I’m under 6 different Professors). I do take a medicine for the Lupus, I’m not sure what one but it does begin with H. The reason I’m not sure, I have a carer, and she deals with it all, and she is not here at the moment. I also take 2 injections of blood thinner each day, Thyroxine, a medication for my liver, a part of it has died, and will not grow back, this was due to opiates. I’ve still have many other problems, but not as serious of the above. I refused the flu jab, I never had the flu but twice my doctor made me have the flu jab and both times I ended up with pneumonia and the bird flu, and ended up in hospital.
Thank you for your up dates.
Teanna
Thanks
Thanks Paul
link seems to not work for me?
"Error establishing a database connection"
Hi tree_shadow ,
This is due to too many people trying to access our website at the same time. We are trying to address it. If you keep refreshing the page you should eventually get through to it.
Thanks. I got it eventually!
Thanks paul:
1 Question re this bit:
Should I still attend medical appointments?
If you have a scheduled medical appointment then it is important that you contact your hospital to check whether you should still attend.
The British Society for Rheumatology has advised clinicians to consider the feasibility of providing remote consultations and implement this where appropriate to reduce the need for patients to attend face-to-face appointments. This includes telephone clinics where your doctor or nurse specialist may call you rather than see you in the hospital clinic. Different hospitals are drawing up separate plans so it is important that you check what your local rheumatology department are doing before travelling to your appointment.
Am asking cause:
The official directives my other multisystem immune dysfunction & connective tissue disorder support groups are giving us is that home isolating patients ‘will be getting instructions direct from the NHS about whether or not we attend appointments’.
But the govt & the nhs are advising LUK to tell us we should phone our clinics
Am dreading the busy phone lines etc I’ll have to survive if I do phone all the clinics I’m booked to attend in the next 12 weeks 🤦🏼♀️
What do you advise....am guessing you’ll say something like:
- if you don’t hear from a clinic a week before your appt, then start trying to get through to your clinic on the phone
But am sure you’ll be totally up on this...
Am V grateful for EVERYTHING LUK is doing to help us navigate this crisis
❤️🍀❤️🍀❤️🍀 Coco
Hi Barnclown ,
It is a very good question. In most cases I would expect that someone would hear from their clinic prior to their appointment, giving them guidance on what to do. Many appointments are being cancelled/rescheduled or conducted remotely.
If it is very close to your scheduled appointment and you haven't yet heard from them I would recommend trying to contact them before travelling to your appointment.
I'll review the current wording and may update it if required.
THANKS 👍❤️🍀
I've suggested an amendment for the wording in the article which I hope we can publish tomorrow.
Thanks again!
If it’s any help, my husband had an appointment for tomorrow and one for Friday but got a call from colchester general postponing the first one until May and another to postpone until Friday.
Thank you Paul - great work that LUPUS UK is responding quickly to new information
Hi Paul, is this all Lupus patients or just those on immunosuppressants?
Hi CarolMcl ,
This applies to all people with SLE, regardless of treatment.
Paul this is a bit of a cheeky gatecrash - but as I’m pending additional diagnosis and my rheumy consultation/ clinic was cancelled today, I wonder if you could advise me as well. This may also affect Lupus patients in Scotland too I think.
My official diagnosis from new rheumy so far reads “overlap CTD with predominantly Sjögren’s features”. I have a persistent dry cough and flu like symptoms always now so it definitely affects my respiratory tract and the last time I had flu it led to pneumonia.
I did phone rheumatology clinic for some clarity today because my husband is now on unpaid leave from yesterday and his care agency wanted to know how I was at risk. But they couldn’t advise and nor could my new rheumatologist (has a special interest in Lupus) be accessed because she’s been redeployed into critical care for the duration of the crisis.
My GP practice just shrug and refer to me being complicated and not fitting the scot gov coding so they suggest this is something I need to take up with the government - not with them.
My GP practice didn’t offer me the flu jab last winter - first time in 9 years I haven’t been text urged to come in for one.
So I asked a GP if it would make any difference if I had Lupus or RA or Scleroderma - all of which I do meet the diagnostic criteria for according to Dr Price, whom I saw last year privately.
He looked and said neither Lupus nor RA meet the Scottish gov coding criteria for the flu jab so he snuck it in under “pending dmards”.
So actually the flu jab rule you’re applying here wouldn’t presumably work for people with untreated Lupus anymore than it would for those with untreated Sjögren’s or RA in Scotland?
I don’t know if this is perhaps something you’d be prepared to take up with the Scottish dept of health on behalf of your Lupus/ CTD members here in Scotland? There may well be people with Lupus in Scotland who haven’t been offered the flu jab under this new coding.
Also I’m really concerned that Dr Price flagged up that I have something called Hypergammaglobulemia (high immunoglobulin G and A) as part of my CTD picture. From what I’ve read this is a polyclonal gammopathy associated with high inflammation.
I can find nothing much on this apart from one link on healthline that seems to describe this as a form of immune dysfunction. But none of this is flagging up on any of the UK/ Scottish definition of “at risk” patients so, now flaring madly and still untreated due to Covid 19 and serious drug allergies, I’m really hoping you might know how I can find out more 🤞🏻
Ironically I meet the less high risk underlying conditions group by having essential hypertension - but I’ve been checking myself and it’s pretty well controlled most of the time. So I’m more concerned about the Hypergammaglobulemia tbh.
Sorry if this is outside your remit but the BSSA aren’t very proactive on the internet and anyway Sjögren’s isn’t my only CTD. I think multiple autoimmune diseases is the category I probably fit - but as I say I can’t access my rheumatologist for confirmation. She passed on message that she will phone me but they couldn’t say when.
I’m hiding away anyhow but it would be much easier to be able to tell DWP and my carer husband’s line manager, why. If my new rheumatologist phones me and clarifies I’ll certainly share her advice here.
Hi Hidden ,
The list of conditions that are invited for flu vaccines is the same in England as well. Frustratingly it is not an exhaustive list and this does cause confusion. It requires doctors to use their clinical judgement. I would like to see 'autoimmune rheumatic conditions' added to this list and will work with RAIRDA to campaign for this. It isn't something we'll get movement on from policymakers in the next few weeks though.
Certainly someone with your medical history should be self-isolating. Anyone with a chronic respiratory illness is at high risk, even more so if you have a dysfunctional immune system.
It would be ideal if someone from your medical team could confirm your risk in writing for you.
Thanks Paul. I’m told by my GPs that this flu vaccine list - drawn up by the Scottish gov public health people recently - is all about coding. They become defensive if I ask or suggest that surely this is open to interpretation and their clinical judgement. They say no it’s about coding and same with determining Covid19 risk.
My service designer trained youngest son has told me that this type of health coding enables people with unusual presentations of diseases or rarity to slip through the NHS data net too often. So I’m guessing that multiple autoimmune syndrome (MAS) like mine is presumably never going to tick their coding boxes for now. Presently GPs don’t get paid for giving people like me and others with untreated rheumatic diseases the flu jab. So they remove us from their practice flu jab lists as a “necessary” saving.
As I say I did get it finally - but I’m concerned for all those with some kind of immune dysfunction now if practices like mine have been sticking rigidly to the coding protocol for financial reasons set out by Scot gov coding rules.
So I’m glad you’ll continue to work on this with RAIRDA.
I’m definitively self isolating now and hoping my rheumatologist will phone me sometime soon so I can ask about the Hypergammaglobulemia and she can clarify in writing as you suggest.
I’ve also never yet had the guided echo to confirm or exclude pulmonary arterial hypertension which I was referred for by the scleroderma professor in November - so feeling extra vulnerable about having so many things still pending - now on hold due to CV 19 🥺😊
Hi Hidden ,
I know it isn't reassuring, but this certainly isn't a unique experience you're having. You are right that it is about coding and unfortunately people do fall through the cracks because of it. I actually presented at a patient group meeting in November last year which was focussing on vaccines. Afterwards I spoke with Mr David Green
(Nurse Consultant for Immunisations, Public Health England) who accepted that people with lupus and similar conditions aren't appropriately coded for in all cases and was going to speak with colleagues about it.
Very good to know you’re on the case already Paul - many thanks as always for all you do to flag up this stuff 🤗
Hi Paul, having the chronic skin Lupus or is it just for the SLE sufferers.? Also I have 2 other autoimmune conditions, and many other problems. My hospital appointments has been cancelled, and the nurses has come out to me for blood tests etc. It’s so confusing ?????
Hi Teanna . Are you taking any immunosuppressive treatments? (a list can be found in the article)
If you had discoid lupus, are not taking immunosuppressants, would not normally be invited for a flu vaccine and haven't had respiratory symptoms in the past then I would think you probably don't need to be self isolating at this time. That doesn't take your other autoimmune conditions into consideration however. It may be worth checking with your own medical team.
Thanks Paul. I really appreciate all your help and on going advice. Take care
Hi Paul
I have SLE - can you clarify - if I self isolate for 12 weeks without any symptoms does that mean isolating myself from other members of the family who also don't have any symptoms? I live with my husband, daughter and 6 year old grandson.
( from Australia ) the medical officials here say that for the two days before the covid 19 symproms kick in - people can be infectious, and six year olds could have the illness ( almost ) without anybody realising it.
A lot of people here are wondering how to self isolate with family members - but it's so important to find a way.
Hi Trdw ,
Unfortunately there isn't much official guidance about this. I think it all comes down to personal decision making and how much risk you are comfortable with. We'll share more if and when we get it.
Ok, thank you for taking the time to reply
Thanks Paul. My GP practice has an ap which just told me to self isolate.
I have appointments booked for 3 days of Iloprost infusions after Easter, but I think it’s unlikely that will go ahead
Hi Lupiknits . That's excellent - well done to your GP practice for adopting technology like this. Your infusions may go ahead - it depends how urgent they are and whether the hospital has the capacity for you at that time. Take care.
Paul_Howard Thank you ever so much for this. It's been a very confusing time for people, especially since yesterday's news
I will send a donation to Lupus UK as really appreciate all you are doing both at this time and in general
Hi fabwheelie . Thank you ever so much for your support of the charity. We will be missing out on a significant amount of fundraising income this year as a result of cancelled events. Fortunately we always ensure we have reserves for our operating costs so the charity is secure. It is likely to impact how much we can do in the long run though.
We'll be putting out online appeals in the coming weeks.
Thank for you this. So does this mean all Lupus patients should self isolate regards?
My situation I am still currently on steroids my recent blood results weren't good so they had to increase it.
Hi SLE-Warrior ,
If you are in the UK and you have diagnosis of SLE then the recommendation is that you should self-isolate for 12 weeks. This is regardless of treatment or current disease activity levels.
I live in London. There is so much information in regards to what to do. I have a rheumatology appointment on 30 March. This is something I will discuss.
Thanks for the info Paul. I have MCTD with neutropenia. Does this apply for those with neutropenia? I've contacted my rheumatologist but am waiting for a reply.
Sorry to jump in but if you are Neutropenic then STAY AT HOME. Neutophils fight viral and bacterial infections. No neutrphils, no ability to fight it!
Totally agree with happytulip !!!
Stay home.
Thank you both for confirming what i thought.
Hi Greenfingers67 ,
I just want to confirm what happytulip and Freckle1000 have already said - yes, if you have neutropenia then you have a weakened immune system and the recommendation is that you self-isolate for 12 weeks.
Thanks for confirming what i thought. It's much appreciated.
Hi Paul,
What happened if we are getting symptoms of coronavirus such cough. Do we continued our immune suppressant medication or we stop it? Please let us know.
You need to contact you're specialist and ask what is the best balance of medications for you in regard to preparing for the carona virus - given you're own medical profile.
Hi Freckle1000, I’ve called the rheumatologist department. I couldn’t get anyone to talked to. So I left a msg. Hopefully by tomorrow someone will call me. I got a cough, it’s not continuously. I’ve called my GP for advice. They advised me to self isolate for 2 wks. I work on a respiratory ward 😩☹️
Offering to consult with Doctors via Skype helps.
But wow. Working on a respirory ward 😯. Something to avoid for as long as possible if you can.
Rheumatology department has called me. Apparently, I’m the first person to call them for advice. Anyway, they advised me to continue all my treatment unless I get a temperature. If I get a temperature, stopped all my medication and report to 111.
Wow. That's interesting advice.
Great to hear they called you.
🙂
I think they supposed to be the one advising us bcos they know our condition better than our GP. My GP always hesitate to advice me about my medication. They always tell me to contact my rheumatology. Take care everyone. Keep safe.xxx
Hello Paul,
Thank you for this information.
I have recently since reading this contacted my GP is who fully aware of my ongoing health issues and possible Lupus. I am still under the rheumatologist and she wants me to start Hydroxychloroquine which I am awaiting a prescription but she has only stated this will help my systems and review again in 6 months but hasn’t officially labelled me with SLE as such but my GP and every doctor I see with my results are adamant I have SLE alongside my respiratory issues.
Do you think it’s wise I self isolate myself and also for the length of 12 weeks, I have a young child and I am concerned in the sense of how it would work being a parent and being in self isolation , could my son still stay with me and does he need to be self isolated also? Any advice would help from anyone! Xx
If you' re sure you're child doesn't have any trace of a cold or doesn't have any chance of having covid 19 ? - you should both self isolate together ??
He currently has a cold and cough which is what I’m concerned about I’ve kept him away from school I am unsure if it’s just a cold or anything else. What would be advisable is this instance? Thanks for your reply.
Just to act on the side of paranoid caution - if it's possible - both of you get tested for the covid19. Then get some structured medical advice after that.
But there's no shame in handing him over to a friend or relative if that's what needs to be done.
Children are resilient to the virus - but he'll need his mum to be fit and well in the future for him. If that means a three month separation to keep yourself safe then that's what needs to happen.
Just as a general knowledge thing ps. There's a theory (?) that will probably be disproved tommorow - that the more exposure you have to a covid 9 sufferer - the more infected you become - the infection culminates and this might effect the disease severity - so - disposable gloves and masks - etc. until you get some medical and practical advice.
You can only get tested in the UK if you are admitted to hospital.
😳
The advice here ( Australia ) today is if a family member is unwell - they need to be isolated in one room, and provided with their own towel and cutlery - ( and acess to their own bathroom if possible )
Complete isolation within the home for two weeks from catching a cold.
xox
In the UK if one family member develops symptoms then the whole household are in 14 days of isolation. I think that is correct.
Thanks right happytulip
Yep. Exactly the same here.
👍👏👏👏👏❤️🍀❤️🍀
Hi Paul
Apologies for the individual question (but hope it may apply for others too). I have cutaneous lupus and take hydroxychoriquine - does the 12 week apply to me? (Sorry unable to access link at present).
Thank you so much for all you are doing.
Hi Mabel1234 ,
We've had this question a lot and I've sent a new draft for the article to be updated. If your cutaneous lupus symptoms are isolated to the skin and you are not on immunosuppressant treatments then you may not be recommended to self-isolate at this time. Are you generally invited to have the flu vaccine?
I am invited to have a flu vaccine, but that is more because I work in the NHS.
If you're not invited to have the flu vaccine because of your condition then you may not need to self isolate at the moment. However, I'm not medically qualified so if you are uncertain you would be best to speak to your medical team.
Thank you Paul
Hi Paul, thanks for your posts. I still can’t get into article as yet, which I understand due to so many people trying to get in. I have Behcets and am on methotrexate and steroids, (I get flu jab yearly also) assume need to self isolate??
I'll answer that Benne..I believe so!! According to the advice posted on the website methotrexate n steroids..n the fact that u have the flu jab yearly mean u should self isolate!! I'm on the same mix of meds n I'm self isolating!!
Take care..stay safe..stay well 🤗🤗
Kat 😽😽 xx
Hi Benne09 ,
Sorry, the website is still experiencing some problems due to traffic. We've got our web hosts working on a solution for us. If you keep refreshing the page you should eventually get through.
As you are on methotrexate you would be recommended to self-isolate for 12 weeks.
Thank you Paul
Thank you hun 🤗
Hi Paul, I have Lupus SLE but no symptoms of the virus thankfully!
So as this 12 week isolation been authorized by the government as my workplace is asking!
And will this 12 week isolation qualify for SSP pay?
Cheers steve
Hi steve61 ,
The 12-week isolation is a recommendation from the government and NHS. At the moment they haven't announced financial support for individuals or businesses affected by it. The Budget only covers up to 14 days refund of SSP for businesses with fewer than 250 employees. We hope to see additional support offered in the next few days and weeks.
Hi Paul. Thanks so much for all this. Just a quick clarification... So, SLE, but not on immunosuppressants. Is this total isolation for me? Not even the shop two minutes away? Just need to know as I live alone and will need to sort out help from friends.
Hi Joni2011 ,
These are all recommendations, not law at present. Therefore it depends how much risk you are comfortable with. We know that it is not just elderly people who are at risk of dangerous complications from this virus and we know it is spreading very quickly. The guidance is that you should avoid all non-essential contact, so if you have family or friends who can help by picking up some shopping then it would help to mitigate your risk.
Ok. Thanks very much for your reply.
Hi paul thanks for the reply,
So even tho the governments stating you take 12 week isolation with an underlying illness, we are not guaranteed SSP after 14 days?
What's the chances of employers or the government covering individuals wages in full if they have an underlying illness?
Do we start this 12 week isolation immediately or wait for further imformation from the government?
Steve
Hi steve61 ,
That is the current situation. The package of support for small businesses was announced at the budget, prior to this precautionary measure.
I hope that they will offer additional support - but I have no information indicating they will at the moment.
The recommendation was for people at risk to be self-isolating by this weekend. With the rapid spread of the virus though, I think sooner is better than later if possible.
Hi Paul, currently I have SLE and use Hydroxychloroquine 400 mg a day and last year had fluid on the right lung and inflammation, fluid dissipated but inflammation still lingers. Could potentially work from home but employer dragging feet. Please can you advise? Kind regards Chrissy
I agree with Kevin - just stay at home. You're life is worth more than a job.
Update from last night - my Manager rang me at home to say that I was not to come to work my IT dept would be in contact today to provide me with everything I would need to work from home. They would telephone and let me know they were coming and would leave everything in a box on my doorstep. So today my 12 weeks begins. Stay safe everyone
Hi CLB001 ,
I'm really pleased to hear that your employer has taken this measure for you. Look after yourself.
That's great of your surgery Louise. I asked mine if I coukd change my face to face GP appt to a telephone one and she said I was the first person to ask this and no I couldn't in advance. Ring up on day I wanted to speak to him!. They're getting there. It's a logistical nightmare!. Hope your coping. Xx
I have SLE and various related conditions. Currently I'm not on any systemic steroids, immuno suppresant medication just pain relief, topical steroid and ikervis,. I work with the public both clinic and community in health, do i need to isolate? Im confused by all the information, also where or who to go to, regarding salary, mortgage etc if i do need to isolate;especially if for 12 weeks. Thanks 😎
Yes. Please discuss home working with your employer. Best wishes Kevin
Here in the us where everyone is also suggested to get the flu jab, our nation healthy or not has already been told to self isolate perhaps until August. I think you will be similar soon. Per capita we do not presently have more cases than the uk and our mortality rate is very similar. I hope your government acts now it will not get better without drastic and prompt measures. The time is now for every citizen to self isolate. Good luck.
Here in California the current request is through the end of April, but possibly 3 months which would be Junish? Hoping and praying it ends sooner. 🙏Maybe we should all pick a date for a world wide fast and prayer day? All religions, whatever your belief?
Hi Paul,
Please can you advise. I am a teacher in a secondary school. I have SLE with Sjogren's overlap, asthma and mid LAD disease caused by atherosclerosis. I am taking hydroxyxhloroquine for SLE. I'm meant to be taking a statin but I'm self managing this aspect. I have low neutrophils and lymphocytes. I'm invited for th flu jab each year.I I'mtotally confused by the advice. What I can understand from my GP (receptionist) is that it is up to me if I isolate? Has anyone else been told the same thing? Many thanks in advance for your replies.
Please discuss with your employer. You fit the self isolation position and your employer has a duty of care towards you. Best wishes Kevin
At the moment there isn't any forced isolation - it is a decision for people to make. However, the guidance is quite clear that you should be taking precautionary measures my self-isolating for 12 weeks if possible.
Thank you Paul and Kevin53. What would we do without this network.
May I say that if you have low neutophils you are very much at risk, should you get the virus you are already on a backfoot and your body just might not be able to fight it. Don't mean to alarm you but neutropenia is not to be taken lightly anyway, let alone with a new unknown virus about.
Hi guys I'm in isolation have mild symptoms. GPs have said to isolate for 14 days. With the above statement how does that apply to people who work? Can I claim SSP? I work part time haven't discussed this with employer yet.
Hi Hidden ,
Yes, according to the new government measures you should get SSP from day 1 of your absence (rather than the usual day 4). Your employer can claim a refund for this from the government if they have 250 or fewer employees.
Thks Paul is this for 12wks or 14days ? Going to speak with employer tomorrow need to get my facts thks. Will I need to get sick note?
At the moment this is for 14 days. I'm hoping the government will announce additional financial support for those having to self-isolate due to serious health conditions.
Speak to your employer about the sick note. ACAS is encouraging employers to be much more flexible about this - acas.org.uk/coronavirus
Thks again 🙂
Hi paul
Thank you for this update . If the people with lupus self isolate for 12 weeks . How will this affect the people they live with ? Are they also expected to self isolate as a precaution ?? Appreciate you advice . Thank you
Hi Harry19 ,
This is one of the areas where the official guidance is lacking at the moment - we'll address it in our next update.
The best precaution would be for the whole household to self-isolate with the vulnerable person. Many employers are doing their best to assist people in working from home (where possible) if they live with someone who has a serious health condition. Without stricter government policies children are still encouraged to attend school and many are still going to work.
The extent of the measures you take all depends upon the level of risk you are personally comfortable with as a household. If you do have people you live with still going out in public, the minimum you can do is follow the guidance on hand-washing as closely as possible.
Thanks Louise I'll only try when I need something. We did monthly appts to keep in touch!. Keep safe and well . Xx
