Yes I did hear them say about texting also, but wasn't sure if one person would get both or one? I have only had the text so far. The shielding is alot more intense than just isolating. But, if it keeps us safe them we have to do it 👍🏽
I received the text yesterday and the letter arrived today. Ironic really since I had to be in the surgery yesterday for another jab. My surgery is around 7-8 miles distant.
Ok. I have been sent messages only. About staying in side all the time etc. Seems I will get regular texts, just waiting to see if I get any letters also.
Hi Carol, I spoke to my health centre yesterday morning (I'm in Bridge of Allan) and they said they hadn't been asked to send out any letters. I'm still waiting to see the rheumatologist so just taking Naproxen for now. Thankfully don't need to go into the office anymore. Take care! Cath
Hi Cath. It's so confusing just now. Lupus UK stated SLE regardless of which meds you're on were advised to isolate, rheumatology guidelines have placed SLE as high/very high and yet as you say we've heard nothing?? I also have a work colleague who has rhumatoid arthritis, severe asthma and taking azathioprine and even she has heard ziltch. A lot of us have really been left in the dark and it's not a pleasant experience at all. I honestly don't know when you will get to see a rheumatologist but I really hope you don't suffer much meantime. Take care of yourself
I'm also in Scotland. They have announced that they are sending out the same letters, but this is only for those on immunosuppressants or with transplants / cancer. This "extremely vulnerable" category are not allowed to leave their homes for any reason and should also fully self isolate from their own household.
If you are only on hydroxychloroquine then you won't get a letter but should follow the standard advice for the vulnerable category instead. These people should self isolate but can go out for a walk once a day away from others and can go to the shops / pharmacy if absolutely essential.
Hi, thanks very much for that information, very much appreciated. My rheumatology helpline has just phoned me back, she is going to get in touch with my rheumatologist as I have also had issues with previous pericarditis and on-going mild interstitial lung disease. Hopefully I'll get a definitive response soon
Very true. All of our varied and different condition definitely warrant the self isolation or shielding I believe. Including with the medications that we all have.
Carol - the steroids (even low dose) combined with the immunosuppressant seems to already give you 3 points, which is high risk and means you need to « shield. »
I am in SW Florida and diagnosed three years ago with many autoimmune issues RA Lupus limited scleroderma Raynaud’s ILD and many more . I have been doing vitamin infusion every other week for two years very expensive because insurance doesn’t cover it .. I had to have port put in place doing well and got off Hydro chloroquine 6 months ago and worried wondering if I should go back on due to Corona virus ?
They said not to come in for infusions until I’m basically on the bottom and lethargic .. Scary ....
Yes it is very scary on a whole lot of levels. I personally wouldn't advocate restarting hydroxychloroquine unless under the instruction of your medical practitioner.
Hi, just received a call from rheumatology department saying they have spoken to my rheumatologist. He has confirmed that being on hydroxychloroquine doesn't raise the risk factor but due to my lung involvement he is saying that I've to self isolate
I hope you get some answers soon. I get that we have the different areas England, Ireland, Scotland and Wales but when it comes to things like this they need to be United and give the help that's needed to everyone in a real and decent time.
Hi Paul, do you know if NHS Scotland are working to the same criteria as NHS England? According to NHS Inform there is no mention of autoimmune diseases. I’ve attached the link below. Thank you (and Happy Birthday).
I’ve just received the text also. I will forward it to my ward manager tomorrow. I can sleep well tonight. I was very worried. Take care all my lupus friend.xxx
I did see that too. I have kids so at some point I will have to atleast go in the garden. Some things are unrealistic. I get it, they want to stay away from as much surrounding air as possible, but something's are just not do able. 🤷🏾♀️
I'm hoping so kevin53 lol. I know, I get it. Try not to just be out around people. Simple tasks of putting bin out, going on garden I know that's ok ! 👍🏽
Can I ask what meds you are on and what is your diagnosis? I’m very confused. My gp and nurse specialist have said self isolate for foreseeable future but no text received? It’s so confusing and scary. Take care all and stay safe and well xxxxx
Would you mind telling me what immunosuppressants you are on? I have SLE and work in the health service with reduced patient contact at present, but have not received any notification from my GP. I've telephoned for advice, but the receptionist only sent links to common websites with routine information about the corona virus.
I take low dose Methotrexate (5mg a week) which keeps my joints pains at bay. I attend a CTD clinic every few months. I'm also on hydroxychloroquine - which I believe could be of some benefit in fighting this virus.
I've a routine day off today, but trying to get some information before returning to work tomorrow.
I'm on methotrexate injec 2 mg, mycrophenalate, hydro, prednisolone. And pain meds. I am only receiving the texts at the moment. Which I think it will stay that way.
It is very confusing does lupus Uk know if there are any plans for government to contact High risk patients after very high risk patients?
Lupus uk sent me an email, following mine, advising me to self isolate as on immunosuppressive drugs but as SOME people are saying to me I’ve had no medical personnel telling me I should for example not go shopping for food. I am on steriods and methotrexate inj - 20 mg. at Christmas I was temporarily taken off injections for 2 weeks and given antibiotics because I couldn’t get rid of a cold, how would I cope with this new virus. Surely the government wouldn’t want me or people like me risking doing the shopping? Who do you ask? don’t want to bother rheumatology or gps . Feel like we are just being left to fight without a chance 😞 need some assurance there is some one fighting our corner and looking out for us high risk people?
According to the rheumatology guidelines, I believe you are very high risk being on the steroids and methotrexate. Can I ask what your main involvement is? That seems to be part of the equation.
I wouldn’t hesitate to call your GP or the rheumatology service. That is what they are there for. Stay home until you get clarification.
I've been following this issue as a member of National Voices and it is impacting a lot of patient groups who are considered to be 'vulnerable' but not 'extremely vulnerable'. National Voices are pushing for clearer guidance from the government. We've heard rumours that this should be coming, but nothing substantial or with a timeline.
From what I've read not from the warfarin, if you are on that, but at risk from the fact that if you are taken ill, need to go to hospital, if you dont get your regular dose of warfarin you are at higher risk of clots, stroke etc.
I haven't received anything from GP or hospital. I'm on 300 hydroxychloroquine. I'm following the advice on this site to self-isolate, but can we really not go in the garden? I have also been going for short walks. I thought this was ok...
This is so confusing, I am a key worker so I don’t want to let my work down unless I am told I should stop going in. I take 15mg Mtx, a week. 3 mg steroid a day and 200mg hydro. Am I being a snow flake and over thinking this or am I at risk?
I agree. I am in a similar situation. Key worker. We are at risk.I want to be there for those who need me and so go to work despite worrying about myself everyday.
When I spoke to my line manager they said as I am not high risk according to the guidelines(!!!!) I will need to come into work.
But have you checked where you stand with your medications and risk on the chart issued by rheumatology UK? I put the post up a couple of days ago. You might be a totally different category to what I am.
To be honest, I personally feel that all Lupus patients are high risk but there are guidelines and then there are guidelines.
I think LWHITE733 and LupusandSjogren are both high risk. It's not down to your work to say whether you are high risk. Just having any underlying health issues makes you high risk. Anyway that you could get sick easily and the effect be worse than the average person you are high risk. I think you both should be self isolating/ shielding. If you can check out the lupus uk web page or NHS web page and just double check. Maybe give your GP surgery a call and see what they say also. But from what your saying you should be at home.
I completely understand where your coming from with not wanting to let any one down etc that's just a normal human reaction but this is a very serious virus and just seeing what it can do to healthy people is a little scary. No one really fully knows what actual effect it will have on a individual, they can only guess because of what kind of virus it is, so they know it's similar to the flu, so they know a couple of things will be the same but they don't know how deep that effect will effect each person. Please double check to see where you stand, you may be putting yourselves in unnecessary danger.
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0 points at esa assessment/ being put on jsa without signing on.
UK GOV, NHS message informing me I'm in the high risk group and letter to follow.
I think I should just swallow this UCTd diagnosis. I’m getting mixed messages from different doctors, 1 says mri was fine, other says not!!
Employers have changed my role and I'm worried I won't be able to do it due to my symptoms.
On planquenil and given quinoric buy my pharmacy " bouncing at the reply " from the woman behind the pharmacy after asking why.
