Hi all, I have recently been diagnosed with SLE lupus (November)... I’m 31 Years old and I’m on hydroxychloroquine, I’ve had bloods repeated however as the medication doesn’t seem to be controlling my symptoms. I’m a teaching assistant and we’re up to full capacity with children now, so feeling a bit apprehensive as it’s almost impossible to social distance with children. I’ve phoned my gp and they’ve said the health board would contact me in regards to having the jab, but I’ve heard nothing yet. I wondered if anyone else is in the same boat as me and has an idea of when they would be rolling it out for us. Thanks everyone, best wishes
Does anyone have an indication on when I would be... - LUPUS UK
Does anyone have an indication on when I would be getting my Covid jab?
Sorry to hear you've not been offered the vaccine. I thought people with a lupus diagnosis were in group six but I think they're still working through that group.
I've not been offered it but my diagnosis is UCTD , like you on hydroxychloroquine. Xxx
Thanks for the reply! 🥰 yes, maybe still working through the list! Wish you luck and hope you get yours soon
I'm a teaching assistant , getting lateral flow tests now. X
Yes, same here... Wish they’d just get us vaccinated though! 😬
Me too love. Understandably there's a priority list and I'm so happy so many clinically vulnerable people have had it. I'm aware hydroxychloroquine isn't a immunosuppressant but think they need to see the whole picture- the medication is only just starting to control my diagnosis, I'm working with children that are too young to social distance and I have recently come out of a 4 month flare that absolutely floored me. If all these factors are added up I believe there is an increased risk. Just find it very controlled and wish there was some flexibility x
Dear BonnyB
Ask your doctor to check JCV1 green book chapter 14a updated 21st jan .
Especially if you say your not stable .
Surly working with children also gives you some sort of priority ..
speak to another doctor .
🦋❤️
Hi Welshlasscerys
I agree, ask another doctor might be an idea. if you have just come out of a 4 month flare and you work with children surely this moves you up a group? . Maybe a sympathetic gp, one who will listen, they are out there, may be able to help. Make a telephone appointment lay out your points and fingers crossed. Meanwhile stay safe.
Good luck M x
if i was you i would be more worried about your symptoms not being controlled with only hydroxy. you should ask your rheumatologist to give you some stronger meds or prednisone.
I emailed my surgery last Friday and asked why I was not called in with lupus clearly being on the government list for group 6. Got reply with apology in an hour and was vaccinated in two days.
I totally agree you should be a priority ! My daughter has the same job as you and does the lateral flow tests .. she too is concerned about the extra children back next week - but has been told she will have the vaccine very soon. This seems to be according to where you live which seems a bit unfair. Our bus drivers and ferry workers had theirs ages ago as considered key workers... mmmm teachers too!!!
I had to change doctors Christmas time as my previous doctor said I was out of area (even though I’d only moved a mile away) .. so I duly obeyed. Within 2 days of changing the surgery rang me and gave me an appointment for a jab as the doctor had highlighted me a priority with lupus. Also several other things he has done referring me to the hospital on the Island for different clinics as he said it was ridiculous to expect me to travel to the mainland hospitals! I’ve also been referred for coeliac screening picked up from a blood test he asked for which has also highlighted iron deficiency... all this not picked up in November by my previous doctor.
It just goes to show what differing opinions and ideas doctors have ... I’ve mentioned all this as I agree perhaps you should ask another doctors opinion?
I’m sorry you have had flare ups, me too but my new doctor has said he has seen a lot of it with differing conditions, not just Lupus and he says the world we are living it at the moment is making us all anxious, even those who have not had this before, it brings out symptoms in our bodies.
Summer is round the corner and I’m sure it will be good for all of us.
I hope you get your jab soon- keep pestering and good luck with all the kiddies due back next week.
Keep smiling lovely light is at the end of the tunnel, we’ve walked the road for a year now and hopefully not much longer xxx
I had a conversation with my GP yesterday asking the same question. She told me I was on the list when we go into that ‘group’ which I queried that we were already ‘in’ that group for vaccines and I knew many people with Lupus who had already had it. So I think it’s probably dependant on your specific medical practice.
I’m keeping my fingers crossed for you that you get your vaccine soon.
Do you have an individual risk assessment? Your Head should have done this with you if you are at increased risk. It doesn't make much practical difference because of the nature of working in schools but it is important to state your concerns in writing. Although we don't like to think negatively, having your concerns in writing gives you more "come back" in the future if you were ill and needed time off work.
I have contacted my practice 3 times and they have replied they are working through group 6 and thanks for your patience.
Hi, I also work in a school and our Headteacher sent us a list of clinical conditions (lupus was on there) and said if we fall into one of the categories then she could get us a vaccine. So maybe try asking your head if they can help. Good luck and I hope you get one soon. 🤞xx
Hi - I’m 42 live in Wales - have lupus fibro CFS becehts and sjorgens. I am having my Covid jab today. Good luck x
Good luck!! ❤️
If you are in group 6 you can now book on the national booking service to get a vaccine via a mass vaccination centre. I did mine yesterday, I have a appointment for the jab on 13th. X
That’s great news! Thanks and congrats