Covid19 - Vaccinations: My apologies if this has... - LUPUS UK


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Covid19 - Vaccinations


My apologies if this has already been covered but just wondering if you’d be able to have any of the vaccinations coming through if you’re on an immune suppressant (in my case methotrexate)?

Many thanks,

29 Replies

No-one knows that sort of detail yet - all they know is that they work in the relatively healthy trial subjects. I think that being on immunosuppressants was an exclusion for the trials. They do know that the Oxford (I think) vaccine works in older patients - they did do some over 65s.

happytulip in reply to PMRpro

I heard on the Today program this morning that the Oxford vaccine was safe for immunesuppressed patients. A lupus patient had written in and asked "I have lupus what could the side effects of the vaccine be?" - that was mostly the jist of it. The answer was that the vaccine isn't live but is safe but unfortunately it didn't answer the real question. For example, "is it going to put me into a whopping great flare?"

That's as much as I know because that is all I heard and had to get my car to the garage. Busy day!

KayHimm in reply to happytulip

It is always a worry, happytulip. What my rheumatologist explained to me is they do the best possible to weigh the potential risks against the benefits. The Covid risk to many lupus patients is just too high, so they will probably accept the slight risk of a disease flare from the vaccine.

Certainly the fact that the vaccine isn’t live is good news for patient with autoimmune disease. I think many will be on the second tier priority to get the vaccine. So that will help a lot of you to get out of isolation pretty soon.

Here’s to hoping!


happytulip in reply to KayHimm

Yup, I'd take a flare over covid anyday. Just not looking forward to it is all.I'll have a duvet and a Boxset at the ready x

Sara_A in reply to KayHimm

Exactly at least a flare can be treated!! Whereas if we get covid ....! Thankfully I'm a nurse so I will be able to get vaccinated fairly quickly I think otherwise being immunosuppressed put us in category 4 or something?? Didn't it??

Anyway I'm hoping that if I get it early from working for nhs that I may be able to go back to work as I'm still working from home! But that's gonna be a whole other question that I don't know who will be able to answer??! When I can go back to work once I've been vaccinated.

KayHimm in reply to Sara_A

And you may not have a flare! Most people don’t get flares from the flu shot or even the new shingles vaccine, right?

I don’t know the system in the UK. We have heard in the US front-line health care workers, essential workers, and nursing home residents. Then high risk people and seniors.

You may be in first group because of your work and your lupus. Thing’s aren’t always black or white. I bet you will be in the first group.

Rooting for you!


WinterSwimmer in reply to Sara_A

Categories: I think it is 6 - well it would be for me. High risk individuals under 65.

What is a 6? Won’t lupus patients with kidney, lung and heart disease be among the first to get vaccine providing it is safe for them?

Thanks! Looks like the American guidelines. Most lupus patients will probably get the vaccine fast since they will be in category 6.

Just to add to pmrpro reply...the oxford vaccine is not a live vaccine which is potentially good news.trials are also starting on the antibodies vaccine for the immunosuppressed. either way we are well down the list of priorities for vaccination so dont get excited yet xx

In my cases (mmf) I'm expecting to stay "shielding" until next spring/summer.for me the vast majority will have to be vaccinated and cases number near zero before I will feel it's safe to return to my normal of just winter shielding x

The information I saw from one of the advisory professors was that the 3 vaccines currently in the news would not be suitable for those with a weakened immune system but there is another vaccine in the pipeline which is being developed specifically for those with a weakened immune system, however this won't be available until spring at the earliest and is much more expensive to produce than the others so will be restricted to those in most need of it - hopefully us.

Sin123 in reply to Whippet_lady

Hope so. Surely we won’t be penalised for having a chronic illness.

But do Lupus patients have ‘weakened’ immune systems? My understanding is that the immune system is too over active and therefore drugs are used to suppress it - making lupus patients immunosuppressed. That’s not quite the same as someone who is immunocompromised because their immune system isn’t working ie cancer patients or patients without a spleen. Having a vaccine would send lupus patients into a flare wouldn’t it? Which is the reason the dead vaccines are administered to them as they cause less of a flare. An immunocompromised patient would be over run with a live vaccine and with no immune system to stop the pathogen they could be very sick.

My point is if immunocompromised and immunosuppressed are different then maybe lupus patients will be able to have the new vaccines when they are available and not have to wait.

That’s just how I understood it from my daughters consultant about why she had to have the dead and not live vaccine. Her poor little arm swelled up and was bright red and hot to touch, after her flu jab and the consultant explained that is what happens in the body when the immune response is triggered hers just goes crazy.

You could be right Singing-fairy, I'm a beginner to all this and can't claim to understand any of it. I know the vaccines being talked about aren't live but, given my very vague looking into it, thought because of the new way they have been developed - unlike any vaccine before , so not following the same rules as the usual dead vaccines - they weren't suitable for those of us who are taking medication to suppress our immune system. If we have our immune system effectively wiped out by, say, methotrexate (which is how my rheumatologist 'explained' it to me) then, surely, we would be at the top of the weakened immune system list along with cancer patients etc. I don't know. I guess the answer is that we'll just have to wait and see though I noticed that the immuno-compromised/suppressed weren't even mentioned in the pecking order announced the other day, it was all based on age and whether or not you were an NHS/care worker.

Your daughter must have been in a lot of pain with her flu jab. Mine was fine but the pneumococcal jab I had a few weeks beforehand did exactly the same. Bright red, sore and swollen from my shoulder to elbow. I hope she's OK now.

She’s doing well now. She hates injections though and has to be off when the other children in the school are vaccinated with the live vaccine.

It’s all so concussing isn’t it? We are lucky at the moment, my daughter luckily doesn’t require immunosuppressive medication yet - just hydroxychloroquine. I am just grateful that her age (10 years old) protects her pretty much from covid.

The positive for me though is just how quickly as a human race we have managed to have answers when we work together instead of working in competition.

Stay well x

My understanding too. Apparently, the reactions to the covid vaccine will be stronger than the flu shot and we should prepare ourselves. I was definitely given all the information before getting the new shingles vaccine (not the live one). I just had a red arm - no other issues.

Lupus patients are supposed to get all the recommended non-live vaccines. The covid vaccine is still an unknown but looks promising for lupus patients according to the expert I read.

Hoping we have good news. Your daughter needs protection from this awful virus.


Sara_A in reply to Whippet_lady

I think when they say weakened immune system isn't that people such as those that have no immune system ie bone marrow, cancer patients etc. Not us that are immunosuppressed, we don't fall into that category.

HiI can also verify that the oxford vaccine isn’t live one. I’ve been following updates quite closely as I am going to be starting on methotrexate. 😊

The Oxford vaccine has not as yet passed the FINAL regulatory stage. Waiting, watching and shielding is the most intelligent, sensible and precautionary thing to do. Many are going through FOMO now because of Christmas pressures?😢🤔

When the vaccines become will need to take advice from the doctor treating you ....who knows your exact clinical condition.I watched a Webinar today with Prof Peter Openshaw, & Tim Spector & they both said they thought any non live virus would be suitable for those on immunosuppressant drugs.

Sin123 in reply to AgedCrone

Oh that’s interesting, do you have a link to the webinar?

AgedCrone in reply to Sin123

Afraid not..but it’s available if you follow CVZoe

KayHimm in reply to AgedCrone

Yes, that is typically the case. We have to remember the vaccine is particularly important for some people who happen to also be on powerful drugs. Always an issue, right?

AgedCrone in reply to KayHimm

One would have thought so but there seems to very little information available to the people concerned..Rabbits caught in the headlights seem to be the average GPs reaction.

The studies on these vaccines only support the notion that the vaccines only prevent severe disease rather than preventing one from getting COVID nor spreading it. So possibly waiting and allowing everyone else to take the risk will not prevent you from severe disease and possible death because it does not necessarily eradicate the actual coronavirus. This vaccine might only help those who actually get it. Herd immunity might not apply according to the studies.

“Ruth Karron, who heads the Center for Immunization Research at the Johns Hopkins Bloomberg School of Public Health, notes that neither Moderna nor the Pfizer/BioNTech study evaluated whether the vaccine prevented infections as well as symptomatic disease, which is key to controlling the spread of the virus. “The data we have are that these vaccines protect you against severe illness, but it doesn’t mean that you can’t get infected and give it to your patient, your neighbor, your customer, or whomever,” Karron says”

If you are afraid of catching COVID do not let unfounded anti vaccine fears keep you from getting the best weapon we will have in our tool box for allowing us to survive it.

KayHimm in reply to Roarah

Wow - I did not realize this. That is disappointing since Covid has such bad long term effects in some patients.


Roarah in reply to KayHimm

Further studies will be needed to see if the vaccines will also protect one from becoming infected but at this time all data is just looking at how well the vaccines protect against having severe disease. The flu shot is similar in that it does not eradicate the seasonal flu at all it just lessens the disease severity.

KayHimm in reply to Roarah

Yes, just read that. And flu shot is never close to ninety percent effective. 😀

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