Hi everyone, I'm new here so hello!
I have SLE (diagnosed 20+ years ago) and I take hydroxychloroquine daily. My GP told me this week that I'm not in priority group 6 for the vaccine because I'm on hydroxychloroquine which is not a long-term immunosuppressant. I just wanted to check if anyone here had had the same experience?
Many thanks in advance for your replies!
Hi Fuzzball04 I I have sle lupus and am on hydroxychloroquine plus 3.5mg of prednisolone each day. I had my vaccination 2 weeks ago. I had no problem with my doctors, I rang up and they booked it for the next day. All the data says that people with lupus are in group 6 obviously those who have underline issues were in group 4. X
Thanks for your reply - this is really good to know!
Lupus as an underlying health condition puts you in group 6 medication like immunosuppressants and prednisolone puts you in group 4.i take both and had mine in early feb.
Hi Fuzzballo4
Yes my doctor did . Even though my condition is by no means stable . I’m on hydroxchloroquine , I’m now in a situation where i need to be on Biologic infusions ,I had to come off Azerthioprine about a year ago, has it seriously did not agree with me .
My consultant could not start myclofenate has I needed further investigation has to what damage Azerthioprine had done .
I was asked to shield last March by rheumatology phone appointment . I was given steroids mid year . My platelets are quite low .
I rang the sugary about 10 days ago ,thought I’d been missed off been called for my first jab ?
Receptionist said your in group six , she listened to the things I had to say about my health , and thought she better confirm with the doctor . Receptionist rang me that afternoon and said the doctor had said you’ve been put into group 6 by mistake and that I should be in group 8 .😳
She also went on to say , but the doctor says we will keep you in group 6 .
A few day later I had to call the doctors , spoke to secretary again , has I know they are ahead of things with the vaccinations . She should you will be done before the end of April as your in group 8 .
I then made a phone appointment with this doctor . Explained myself , he then booked my my first jab . Yet still said I should be group 8 . As he said I’m not taking Azerthioprine .😳.
He stressed me out so much with his attitude to not following the guidelines , that he caused me so much upset and stress that I really don’t need .
Please read the green book guidance has to priority , if you look back at my posts , you will see the area I this guide that you need to refer to .
Sorry about the long , get off my chest post .
Needed to vent ..
🦋❤️
If
No apology necessary - it sounds like such a stressful situation. Thanks for your post it has been really helpful and I'll look back at your older posts too.
Hi there
I didnt know anything about this grouping. I got a text last week asking me to book an appointment for my vaccine.
Glad they got in touch. I don't think it's been clearly communicated but a couple of weeks ago a family member spotted it and saw Lupus was included
It makes me so cross that doctors cause so much un necessary stress. Xx
I'm on nothing and I got vaccinated under cohort 6. You need to argue the case quoting the jvc green book in which it states that being diagnosed with lupus is enough
I have Sjogrens Syndrome, Hashimotos, Esinophillic Oesophagitis auto immune and Haemophilia C. I’m on Hydroxy and Budesonide steroid and other meds. I’m doing voluntary work in a high school two days a week. Not been on any vulnerable list and not called for vaccine either. I dont mind waiting x
The GP is wrong, I’m 49 diagnosed with SLE 3 years ago, I take hydroxy I was called for my vaccine on the 15 February. Get in touch with you’re GP and tell them to read the green book, you should be in group 6.
If you go to the government website where they list the group 6 conditions lupus is clearly there. Take it to your GP. I was put in group 7 apparently by mistake. When I approached the GP they apologised and moved me to group 6 and said they will make sure all their lupus patients are moved to group 6 too. I also have only hydroxychloroquin and my lupus is very stable. Good luck. Don’t let them fob you off.
Why is it so variable? I have SLE and was vaccinated as part of group 6, so you can tell your GP that others have been. Good luck xx
Hi, Lupus is quoted on priority group 6. I had my vaccine on Friday.
Hi I was in exactly the same position, GP said they can't change me from group 8 to 6 because it was not decided by them but can't tell me who to contact. But I have got an appointment for vaccination next week because the NHS booking site is now open to anyone over 56 years old. I hope you can get yours soon😀
This isn’t true. They can change it. It just isn’t straightforward for them to and they haven’t been told how. My GP agreed I should be in group 6. It took weeks but she corrected it. Then when I tried to book it had defaulted back to 9 (she has no idea how) and it took another week to correct. My GP said I was definitely coded for SLE in NHS system so algorithm isn’t fool proof. Practice manager was v aggressive in her replies when I tried to contact her & receptionists directed me away from GPs. Said it was nothing to do with them. GP did fix it though.
Hi Fuzzball
I don't know how old you are but if you are 56+ the government booking site has been updated.
nhs.uk/conditions/coronavir...
Apologies if you haven't reached that age yet but it might help someone else on here.
Thanks for all your responses. It's been really helpful to hear your different situations, and it really shows the inconsistency too! I'm in my 40s so I can't yet book online, but I will go back to my GP about this. Thanks again
See my previous thread on this, but you won’t be able to book online through National system as group 6 are only going through GP led vaccinations (which is a bit crazy as it’s the biggest group 7.5 mill). Not until you qualify by age which is a fair way off if you’re 40. You have to persist with GP if you aren’t group 4 (which is The immunosuppressed bit they talked about) then definitely group 6.Lupus is only 4 or 6. If that GP doesn’t help book an appointment with a different one.
Hi, I should be in group 6 but haven't heard anything yet, and am unsure how to either confirm which group I've actually been put in at my GP surgery, or which groups are currently being offered vaccinations there. There's nothing on the surgery or local council website, and any attempt to phone the surgery is rewarded with a 15 min recorded message telling you to get lost (basically) 😉
Yes that's the same at my surgery! But I saw on facebook that people had called to check their grouping with no issue so then I felt better about calling. I'd give them a call, I'm glad I checked otherwise I'd still be waiting to hear
Thanks, I need to be braver!
Ours was the same. We even got texts saying don’t call about COVID vaccination. However the receptionist was able to check for me, so my advice is ignore it say you have lupus & just want to check what group you’re in.
My rheumy gave me advice once, when I used to be a quiet mouse and not question the nhs, wait my turn graciously for appointments, test results etc. He told me, to be my own health advocate, if GP aren’t listen, make them listen, stand tall and fight you’re corner because nobody else will. It seems in certain situations those who shout loudest, get what they need. You are rightly entitled to be in group 6.
Fuzball04 Let us know how you get on and if you can obtain the vaccine. I’m only on Hydroxy and got my text inviting me today I’m similar age bracket.
Good advice Wishie your rhumy sounds like my old professor who said same thing to me!
Good luck
Thanks for letting me know BeeHoneyB, I will keep you posted!
Wishie, sounds like you have a good rheumy!
Hi everyone, just a quick update on this one...
So I ended up getting in touch with Hertfordshire Trust (who ultimately heads up my GP surgery) outlining the inconsistencies in Lupus sufferers being classified (or not) as priority group 6 and asking for clarification. They said my GP was correct - "Please be advised that you are not yet eligible for a vaccine under cohort 6 as patients with lupus conditions are only in priority cohort 6 if they are on immunosuppressant medication. This is outlined in the green book called immunisation against infectious diseases, assets.publishing.service.g...
On that basis, I decided that that was that given that my GP was unlikely to go against the word of the Trust. Then today, I got a text asking me to book my vaccine! I'm early 40s so I guess I must have been reclassified to be invited this early? Whatever the reason, it has ended well but I'd say it's definitely worth checking with your GP if you haven't heard anything yet.
Thanks for all the advice and posts!
How many here have had covid-19?
A dry cough, that has been with me for weeks 
Me again 
Newly diagnosed - Hydroxychloroquine question
Belimumab (Benlysta) has been approved for the treatment of SLE by NICE
