Hi i am looking for some advice as i am feeling a bit worried. I could feel myself starting to flare up a few weeks back, i had blood tests to check the activity and they came back fairly normal.
My joint and muscle pain has gotten a lot worse to the point where i cry getting out of bed. My neck and back is in agony and i can barely move. I also have a sore throat, no appetite and i have been feeling quite sick.
My partner and I work in the same office and we live together. Today he was told he would be returning to the office (we are both currently working from home), just in a random order, which I dont agree with as he is also high risk. I expected him to be in the last group of people to return. My questions are -
Would a blood test now show my lupus in a full flare now? Or would i be wasting their time?
If my partner was to go into the office and i am in a flare, i worry that he should not be returning home after mixing with people when i am in this condition, am i right?
I also worry that when he leaves i wont get around as easy. I couldnt get myself out of bed today. Im hoping the doctor will advise that we both stay home as leaving is a greater risk just now but unsure if they will bother to test me again since my bloods were recent and i was told i did not need steroids. Can anyone give any thoughts? I am very worried. Thank you
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Jodziebear
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With your level of pain and loss of appetite, you really should call your rheumatologist. They may want you to come in or do a telemedicine visit as well as blood tests. You could mention your husband’s situation and at that time.
This has happened in my house hold unfortunately I cant work as I have very complex medical problems 1 being lupus and chronic asthma and copd . My husband is a train driver and trains the drivers he was told he had to still go into work even with me be I'll the only thing they stopped was training so only himself upfront driving train .still was not happy but had no choice . Also my son is a front line emergency worker he still had to go in . But as soon as they got home changed clothes into shower and had to do the best we can . So far none of us have had any symtoms waiting for antibody tests just to see as we were all I'll in December .good luck keep safe .
Hello, so sorry to but in to this thread and your reply but how can you get an antibody test? I hinted in a phone call with a GP that I think I had covid becoming ill around 20 Dec. I started with tiredness, bad throat (not the usual sore throat, this was different) and shortness of breath. It properly emerged on 29 December when I then had 2/3 days in bed with flu like symptoms and a temp of 38.9, my muscles and skin hurt and I had a headache for about 2 weeks or more to the point they suspected giant cell arthritis (it wasn’t). I visited GP - high inflammation, my heart was thumping out my chest so had ECG (it was too fast and told to double my beta blockers. Blood test confirmed infection of some kind due to raised CPR and ESR, had to have a second lot of antibiotics and felt ill for about a month in all. Was signed off work for three weeks after taking first week myself.
My husband got ill, the worse he said he’d ever felt and had couple weeks off work My dad got ill but at 90 got over it ok, but did visit GP due to not being able to breathe or sleep at night. My nephew got ill but nothing serious but everyone came to me at Christmas and I was anxious about it beforehand.
Anyway I’ve never been offered the antibody test but in 2017 I tested positive for antibodies (don’t know which) and my daughter who is now pregnant was told she tested positive for antibodies in March but again we don’t know which ones. It’s just got me thinking because they think they’ve found a new patient zero from uk who took ill 6 Dec after a trip to Switzerland, her antibody test says she’s more than likely had it but they can’t state for certain it was back in December.
All food for thought.
Take care and stay safe. Good luck with your antibody testing. Stay safe
There is currently no antibody test available for covid on the NHS because they dont know how long the antibodies will last. You can however buy them from superdrug etc if you wish.
The antibodies tests you and your daughter will have had will have been anti-ro and anti-la. These are part of the lupus panel and have different effects on your risks. They are not associated with covid or its risk factors so far.
Jodziebear, if you have a shielding letter (for UK only), your partner could offer this letter to see if it would help continue working from home as he/she is living with you who seems to be under vulnerable group. If not perhaps you could offer a copy of a diagnosis letter and see if this could work. My point is for your partner is to illustrate 'He/She is living with a vulnerable person'. It also depends on who the employer is and how they manage the whole covid19 situation. We have been working from home and managed to get some extension until early September 2020. More or less. I rather my family not go back until early March 21 . My daughter's office is asking everyone to go back, therefore she will resign at some point.
She has offered a letter of diagnosis and her company also knows my illness(we were refused shilding letter by our GP). This is terrible that we are asked to risk our lives. But the world is in the same situation, hope they understand this point and allow your partner extra time to work from home. In the meantime, please ask help for your pain. Being worried all the time is also not good for your health. Please ask you doctors to guide you and help you with your pain. With love, xL
If your husband has a shielding letter for being high risk then he should not be returning to work. However, if he does not then he can return to work. Unfortunately this means you are advised to isolate from each other as set out in your shielding letter.
I'm not sure what medications you are on that mean you need to shield, but it's all about weighing up your personal risks and whether you think isolation from your partner is necessary. There are so many factors here depending on the severity of your condition, the level of immunosuppression you are on, any other risk factors (lung conditions, age, ethnicity etc) which need to be measured against your quality of life. Only you can make the decision of what is right for you.
If you decide not to isolate then you can do things like getting him to strip and wash when he gets home, then wash the door handles etc. He can also talk to his employers about measures at work.
In terms of the symptoms, you can have increases in symptoms that arent a lupus flare. My medical team call these baby flares. They can be due to a reduction in activity levels, increase in stress or other environmental factors. They are normally treated with rest and pain killers. If they dont go away then a temporary increase in meds may be required. The rest is to try and minimise any additional steroids needed.
If you are having a full blown lupus flare with increase in disease activity then this would show on your bloods. They are normally treated similarly but may require longer term increases in medication depending how your lupus affects your organs etc.
If you're unsure then you can always call your consultant or nurse. They are available even during this pandemic.
I am sure many people are in this position at the moment and will be interested in this post.
Here is a link to the Government's advice on Shielding.
gov.uk/government/publicati...
And LUPUS UK's latest article.
lupusuk.org.uk/coronavirus/
If you are shielding, you can now leave the house to exercise,( just be careful to go to places and at times when it is less busy). You are still not to go shopping or go back to work.
I had a shielding letter and received my second in the post yesterday saying to carry on until 16th August. To be honest, I am not sure that I fit into the Shielding category and might well be Vulnerable so just strict social distancing. I have members of my support group who have far more complications and overlapping conditions compared to me, who have never received a letter! The system has let a lot of people down. But anyway, I've stayed at home. Not done my own shopping. Got food delivered and friends have collected my meds etc. Until the advice was changed and we were allowed to exercise outside. So I've been for 2 walks and 2 short drives. My Mum and brother have visited our garden and that's it. I still don't feel very comfortable going out though. I have bloods at my GPs on Monday and am not looking forward to it.
However, my husband has worked throughout. His company know I have lupus. They've had staff stay at home as they are shielding, which they had no problem with. Plus, some members of staff have stayed at home due to loved ones shielding at home. They have now been offered to either return to work or go on Furlough. But my husband has been in every day. No one has asked him about his situation. I asked him last week if they realised that I was shielding and could ask him to work from home, and he said, I would be worried for my job if I told them I couldn't work because of your condition. He is management, but it seems that the way they treat others in this situation is not applied to his job.
So, from the beginning I have been strict with him. He comes home, no one goes near him (poor man says he feels like a leper in his own home), he puts his clothes straight into the washing machine and I put them on a hot wash. He washes his hands and changes. I also clean the bathrooms a lot more than normal, the door handles etc and use dettol spray around the place, windows open every day to air the house etc. Anything to make me think I have done all I can.
He did have a few cases of COVID at work in the beginning but there hasn't been any for a few weeks now. They take temperatures on the gate. He has no meetings in person - even though they are in work, everything is online. No one comes into his office. They have cleaners cleaning the toilets and door handles throughout the day. The canteen has been open, but you collect your food and sit in your office to eat it alone. So, we have both been as careful as we can be.
We are lucky we live in an area where there have been low numbers of cases and very few deaths. I am not sure how I'd feel about him working if we lived in an area where there had been more deaths.
I have now also decided to send my two younger children back to school on 29th June. Although the way that is going, they might only get a handful of days in school, before the summer break. As I have a shielding letter, I could keep them home. My main reason is their mental health, they are 15 and 12. They are missing their friends, their school, their routine. My middle child is Year 10 and so GCSEs next year. He has missed so much teaching time now and is very far behind. They haven't said how they will handle things for Year 10s yet. So I want him in to see his teachers. (My 16 years old would have sat his GCSEs this year, but they've missed them and he awaits his results as set by his teachers, based on mocks, coursework, previous tests and the level he was working at in school). They understand why we've been so strict and adhered to the lock down rules, but I think they need this for a few weeks at least. School will only be back for 4 weeks before the 5 week summer break. Again, we live in an area with low deaths and there have been no new cases in Pembs for 11 days in a row.
However, if I start to feel unsafe again and the numbers start going up, I can change my mind and keep them home.
I have had many chats with members of my support group about all of this and we've all concluded that everyone's situation is different. Jobs. Family. Mental Health. Etc. We are sensible people and we can make educated decisions for ourselves. The areas we live in will have different numbers of cases and different R rates.
I think you and your partner need to have a chat and make a plan. Is his boss approachable? Would he understand? Can they have a chat about the set up in the office if he w as to return? So get some more information and take it from there?
As for your lupus flare and bloods. Unfortunately this is something many of us have been through. We feel terrible, we know we are flaring but it doesn't show up in the bloods. There have been many posts here about lupus patients feeling that they have to prove their symptoms. So when no joints are obviously swollen and nothing in the bloods, they are made to feel like frauds. I am lucky that I have an emergency treatment plan, that when I feel like I am flaring and need extra help, I have steroids on my repeat prescription and I take according to my rheumies instructions for 8 weeks. He trusts me to do this, without going to him and when I do see him, he always wants to know how many times I have taken them. So he knows I am not abusing the steroids.
However I am very aware that few lupus patients have such an emergency treatment plan. Do you have an emergency Rheumatology Helpline telephone number? Or is your GP helpful? Some GPs are happy giving short courses of steroids in these situation but some are not. May be worth finding out which of the GPs at your surgery are more understanding of lupus. Of course none of them like us taking steroids on a regular basis, so they are cautious. Do you take any DMARDS? It's really hard to say for sure, as everyone lupus is different and we all have different medication combinations.
Of course your Rheumatologist or Rheumy Nurse or Lupus Nurse may help with the work situation too -if you can get hold of one of them.
Sorry, I have waffled a lot. I hope what I've said makes sense. I think you need to make a few enquiries with work and your medical team, so that you can make some decisions.
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Work update: disgusting that I was allowed to go into the office and work, no offer to work from home like all the others!!!! Furlough leav
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