I have lupus but I am lucky that it is well controlled with just hydroxychloroquine but also have autoimmune under active thyroid and sinus tachycardia.
I have just been told by my GP that I don’t qualify to have my COVID vaccine in category 6 because I am only on hydroxychloroquine and no other immune suppressant. Has anyone else been told this or has anyone in my situation been told they are in category 6.
Really upset so any info would really be appreciated. Thanks xx
Welcome Hugs1.Lupus puts you in group 6 as an underlying health condition.those of us who are classed as clinically extremely vunerable and are shielding due to immunosuppressants (except hydroxy) and/or prednisolone are in group 4.im group 4 and have had my vaccine but I must continue to shield until told otherwise. Hopefully now the top 4 groups have been offered vaccines you wont wait to much longer for yours. Best wishes xx
I am afraid having Lupus doesn’t put you in a higher category I am on Mycophenolate that puts you high risk it effects your immune system. My niece who has MS wasn’t in the high category
Thank you I know that as I take mycophenolate and prednisolone.i do say in my reply that it is immunosuppressant medication that puts you in a the higher group 4 and lupus as an underlying health condition puts you in group 6
Thank you for your reply that was exactly my understanding but gp saying otherwise . He even asked rheumatology at my local hospital and they agreed with him . Is there any way I can dispute this ?? Xx
In my vaccine letter there was a list of illnesses lupus was on that list.you could try going back to your dr with that info .if you go to the coronavirus link on the home page you should find info there.others maybe able to give you more info x
It makes sense to my. Hydroxy doesnt really suppresses your immune system.
Thanks for all your replies x
Hi Hugs and welcome. I was on Hydroxy for nearly ten years. I have had no shielding letter ever and was told that they are for “ sick people” by my surgery. My husband with absolutely no health issues is getting his vaccine this month. My carer has had hers because she has mild asthma. None of my consultants will see me at the hospital because they say the risks are too high for me??? I fear some of us are falling through the cracks so I understand how upsetting and frustrating it is for you xx
It seems it is a question of left hand not talking to right: my GP put me in category 4 and I have been called for my vaccine but received a letter from the Corona Virus Support Team saying they could not find any evidence that I was extremely vulnerable 🤔. Silver lining could be that it is in the power of GPs to alter the category to suit your personal circumstances?
Good news that you have been called for your vaccine however the decision was reached. I am so pleased for you xx
I agree that some people seem to be falling between the cracks. My lupus diagnosis was changed to Sjogrens a few years ago - had lupus from my teens and am now in my mid 50s. It’s really annoyed me that my best friend had the Pfizer vaccine on Friday aged 49 and with no underlying health conditions and no caring responsibilities - her husband had it because he had a heart attack but works full time again now. She doesn’t know why she was given it but as they say, you don’t look a gift horse in the mouth. My dysphagia is getting worse and I choke a lot now but am not on steroids or immunosuppressants. I also have APS which is a concern as this appears to be one of the things that is actually a symptom of many who have complications through Covid with blood clots. I am really fed up with having to fight for everything just because no one knows about this horrible disease and even doctors think it’s just dry eyes and mouth. The aforementioned friend has people in and out of her house all the time and doesn’t understand why I won’t break the rules and come out of my house to see her for a cup of tea and a chat. Probably just as well they gave her a vaccine all things considered! I just feel that we are now the forgotten people left to get on with trying to keep away from this terrible Covid but with no help or support.
Thanks for your reply I am so sorry you too are going through this it is so exhausting and unfair. You are right people don’t understand about why we won’t break the COVID rules I am sure my friends think I am overreacting!!!
I am now going to speak to my GP about my other health conditions i.e my M.E , because slot of campaigning is going on at the moment for people with M.E to be included in category 6.
Wishing us all luck xx
Can Lupus UK advise you on this? I have read a few cases like yours and I’ve also read that people with lupus and on no medication or on hydroxy having been given the jab already! It seems to be a postcode lottery. I haven’t been called for mine yet, but if they try and change my group I will pursue it through the CCG like I had to to be able to continue factor 50 sun screen on prescription. My rheumy once told me, sometimes the nhs get things wrong, be you’re own health advocate 👍
Hi, my daughter has ME can you tell me more about the campaign please?
Also, just to let you know, I received my invite for the vaccine today. You should definitely be included in group 6, call the practice manager at youre surgery and ask them to check you’re coding is correct.
Hopefully you’ll be invited soon x
Hi Wishie thanks for replying I am so glad you have been invited for your vaccine 🥳. Unfortunately I have been through it all several times with my GP and a rheumatologist and they are adamant that because I am only on hydroxychloroquine then I don’t fall into catagory 6... I am so exhausted from it all!!!!
If your daughter goes onto the ME association Facebook page there is loads of information on there and lots of advice from Dr Shepard.
meassociation.org.uk/2021/0...
Also here is a template of a letter that can be sent to her GP that others have had success with
meassociation.org.uk/me-ass...
Hope this helps xx
I’m so sorry to hear that, but you’re GP is wrong, it’s in the medical green book that you are entitled to it in group 6. Please contact Lupus UK and see if they can help.
Thank you so much for the link and I really hope you get something sorted, it’s infuriating the way we are treated at times.
Xx
I’m not sure how I attach photos here is a link to the green book.
assets.publishing.service.g...
If you read under immune suppression section, it clearly states those with systemic lupus who “may” require long term steroids or immune suppressants. That is ALL SLE patients, by the very nature of our disease being unpredictable. Could you contact you’re local CCG?
I hope this helps x
Hi wishie 🤗 if u want to attach a photo when your replying..click on the mountain button n that will access your gallery!! Oh listen to me..I'm really not cyber savvy but I learnt how to do this from another member here so thought I'd pass it on!! 🌈😽😽Xx
People considered Clinically Extremely Vulnerable / on the shielded patient list should already have had invitation for Coronavirus vaccination as they were 4th priority. ... if you were in that category and have not had an invitation you can go online to get it
As I understand things, all other Lupus SLE patients should be 6th priority as Lupus counts as an underlying long term health condition that puts Lupus patients at higher risk from Coronavirus effects. The government even named Lupus in their guidance.
See this link
gov.uk/government/publicati...
Most information I've seen is saying this minimum of 6th priority applies to ALL SLE patients regardless of disease severity or type of treatment.
However, be aware I'm hearing reports that some Lupus patients are being told they are not 6th priority as some Drs, GPs etc are using the "may require immuno suppression treatment" interpretation in the guidance to discount some people (if that applies to you I'd advise contact your own medical team) ...
To help explain I think the wording "MAY" is causing confusion. British Society for Rheumatology (BSR) and Versus Arthritis tend to say Lupus diagnosis itself regardless of severity or medication, puts people "medically classed" as "immunosuppressed"/ sometimes referred to in medical terms as "immunocompromised" due to disease
JCVI tried to cover Immunosuppression as a result of disease or treatment as a priority group / higher covid-19 risk in their original guidance
gov.uk/government/publicati... ... I personally believe this still stands and is the reason ALL SLE patients should be a priority group
Paul_Howard I would really appreciate full clarification from Lupus UK regarding the minimum 6th priority for all SLE patients regardless of disease severity or type of treatment, as many people are getting conflicting advice (Which is causing a lot of concern, and I believe is dangerous as it could mean some people get missed out on the 6th in line priority)
The charity Lupus UK have excellent information on Coronavirus & Lupus
and on Coronavirus Vaccination
lupusuk.org.uk/covid19-vacc...
These Versus arthritis links also have useful information, and BSR info was referring patients to Versus Arthritis
Hi Hugs1, I’m the same as you, only take hydroxychloroqine and am 63. I haven’t heard anything about my vaccine yet and thought us with lupus should be in category 6. My husband suffers with asthma and is the same age as me and he hasn’t heard anything either. We’re both with different GP’s surgeries too. Yet we know of at least 2 people younger than us who have had their invites, 1 had a TIA (mini stroke) before Christmas and the other has asthma.
My daughter who lives in supported living with 3 other ladies and has moderate learning difficulties and epilepsy hasn’t heard about hers either.
There are a lot slipping through the net and it’s very frustrating.
Think we should start a campaign now.
Also I forgot to mention that my 17 year old great nephew who has very mild cerebral palsy has had his invite for his vaccine today.
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