Vaccine: Hi I work in the NHS and have had SLE... - LUPUS UK

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Vaccine

ajanjua profile image
13 Replies

Hi

I work in the NHS and have had SLE lupus nephritis since 2015. I'm on steroids and hydroxy

I'm very confused about which vaccine to have as I have read so many different opinions.

My GP has no idea so I'm turning to the lupus community

Thank you

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ajanjua profile image
ajanjua
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13 Replies
strawberrylips profile image
strawberrylips

Good morning ajanjua,, Yes I am in the dark too, we hear so many conflicting opinions..

Like you I have Lupus nephrelitis and take both azathioprine and hydrocortisone and will take instructions from the medics, hopefully they will give us the best vaccine for our condition..

Best wishes jx

miccika1 profile image
miccika1

There is no data yet on any additional risk for any current vaccine and lupus folks. Only greater risk has been identified in people w severe allergies and Pfizer and Moderna vaccines. My personal opinion is that my risk of complications from covid is greater than the risk from vaccines and will take any of the vacvjnes unless the data comes back saying one is better than the rest for lupus folks

KayHimm profile image
KayHimm

Your GP has plenty of information available to know your risks of serious illness if you get Covid.

There is no data on the safety of the vaccines on any groups. Do what your rheumatologist recommends. That is what they are there for.

Roarah profile image
Roarah

My rheumatologist mentioned most long haulers are being treated as if they have Me/cfs unless organ damage and blood work oddities are present. Covid might help elucidate fibromyalgia better.

KayHimm profile image
KayHimm

For your own safety you should avoid in person medical visits. In a video posted about APS patient management, the experts discussed all the precautions they needed to take to protect their patients. Doing lab tests less frequently and providing telemedicine were two things mentioned to protect high risk patients. With your lupus and kidney disease you are probably much higher risk.

Have your doctors told you how often you need kidney function tests? Do you get fever and other symptoms when your kidneys are affected?

I understand your concern. You definitely need a plan for monitoring during this time.

You should be eligible for the vaccine soon, right? Take good care.

ajanjua profile image
ajanjua

Hi allIt's all so confusing I had a face to face from my rheumatologist since Dec 2018 spoke in the phone very briefly they had not up to date blood results but got told to keep carrying on as normal. My joint hurt mouth is full of ulcers but all is ok???

I'm just not sure what to believe anymore

Please be safe

Xxx

KayHimm profile image
KayHimm in reply to ajanjua

Have you had blood and urine tests during that time?

Though I don’t have any facts to back this up, the UK seems to be unable to get back to halfway normal since the first surge. Hard to understand. Maybe parts of the US are in the same emergency state. One forum member from California texted me that her doctors were told to stop seeing patients in the clinic and report to the hospital.

Confusing is right. But I would think you would get better information in the UK given medical care is coordinated by the government.

ajanjua profile image
ajanjua in reply to KayHimm

No blood or urine tests done since 2018.When I had my telephone I asked for blood forms to be sent, but I'm too scared to go and get my blood done.

KayHimm profile image
KayHimm in reply to ajanjua

I understand your worry about going to a lab. But you don’t want to have something important missed. My cousin with lupus started having abnormalities in blood tests that show liver damage. If you are on immunosuppressants or have kidney disease, the benefit may outweigh risk. Some doctors recommend a mask plus a face shield for high risk situations.

Hope you figure out the best approach for you.

KayHimm profile image
KayHimm

You misunderstand me. From what we are reading in the US, most medical care in the UK is inadequate at this point.

The problem is that even with full protection, a patient is at greater risk when in a medical clinic. You absolutely should have all the tests you need to monitor your disease. But you don’t want to be in contact with others unless it is an emergency, especially with this new highly contagious covid strain around.

When I was sick with Covid and my doctor probably would have sent me to the emergency room under normal circumstances, he told me to stay home and checked on me the next day. Covid is deadly. And you are at higher risk for illness. If I were in your position, I would want to stay in touch with doctors by phone or video conference and do blood work in labs that have hours for high risk people.

Why are they not doing your kidney function tests? Can you be in touch with your nephrologist? They may want to do them less frequently because of covid risk at labs.

It does seem very different in the UK right now. Our doctors actually are doing in person consultations readily. I just got back from the dentist. But I am not high risk like you.

ajanjua profile image
ajanjua

Thank you for your reply. I pluck up the courage and will goXxx

KayHimm profile image
KayHimm

I misspoke. We have some areas that are in bad shape. One forum member from California texted and said her doctors are no longer seeing patients out-patient. They were told to report to the hospital. They are rationing care and limiting oxygen. Really bad. That is how my state was in the first surge.

I heard on the news that in London one out of every twenty or thirty people may be covid positive. People like you really have to be careful.

Does your nephrologist recommend you test your urine at home? I thought I heard on this forum that some people were advised to do that. The problem is with you they probably need blood tests too. It really is a dilemma. You must not get Covid.

Kidney disease is in the highest medical priority group in the US. I haven’t seen the UK tiers.

Let us know what your GP says.

KayHimm profile image
KayHimm

That is unbelievable. I would think you would have had monitoring at least every three or four months.

It does look like you are on the highest priority after the 65 year olds to get the vaccine. So stay well and hope the UK is able to get into high gear now. My state just today opening up availability for a new group and increase vaccine sites.

I have never heard of a GP treating lupus kidney disease, though they certainly should be helpful getting you the vaccine and ordering labs during the pandemic. It is a good idea to talk to your nephrologist.

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