There’s been a lot of comment about the Pfizer vaccine today,but still no info to say whether people on immunosuppressants will be able to have this vaccination? It’s a worrying time.
I am just hoping that the consultant will have some information when I speak to her in a couple of weeks.pso fingers crossed.
I hope everyone is doing ok in this difficult times.
Take care
There is no data on this for no studies of covid specific MRNA vaccines included immunosuppressant patients thus the advice is for doctors to weigh each individuals benefit vs risk separately so talk to your doctor when your group is up for the vaccine. Here is a good link hematology.org/covid-19/ash...
healthunlocked.com/lupusuk/...
Have a look at this thread.
It is unlikely your consultant will know yet either - no studies have been done on patients yet so even the scientists don't know.
It has been said it isn't suitable for immunosuppressed patients - but that means (according to the scientist I heard on Sky News today) HIV/AIDS, solid organ transplants, renal patients, cancer patients and people with congenital immunodeficiency syndromes. If you are on immunosuppressant drugs what is more likely is that you might need more vaccine to get the same effect or, as is recommended if you are on methotrexate for example and want the flu vaccine you take a drug holiday for 2 weeks post vaccination.
Goodness. I've never been recommended to have a methotrexate holiday after the flu jab. Is it a thing? Usually pretty good after my flu jab, just the usual side effects that other people get certain years with that particular year's jab.
I found a study that looked at the development of antibodies in patients and it found that a far better result - and therefore protection - was developed in patients who took a 2 week drug holiday. The time between a mtx dose and the flu jab itself didn't seem to have a great effect so you can have a dose a day or 2 before without detriment.
But no - I doubt many doctors stop to think about the fact that the basic rule of stopping mtx when you have an infection and/or require antibiotics to allow the immune system to function better for recovery also applies when the immune system needs to be doing its other job of developing immunity to something.
Hi, I’ve been really interested to read ur comment on vaccines and that immunosuppressants need more vaccine - I’ve got SLE and had several different vaccines over the 16yrs since I’ve been diagnosed & some of the same vaccines I’ve had multiple times due to showing no immunity on tests, eg rubella after both of my last children? And had chicken pox but got no immunity, I have become more curious about vaccinations and lupus - I’ve had poor reactions and don’t seem to get immunity I should. After HPV vaccination, I developed extensive neuropathy & MS like syndrome & ongoing deterioration of loss of strength, balance, functional capacity and numerous weird & unusual / undiagnosed complications that have just been dismissed as related to Lupus? I’m really interested to no more about this and understand how & why this is? I’ve not had flu shots the last couple years as I feel extremely unwell and seem to flare post vaccination. I’m keen to hear , read recommendations of research or info or find out anything anyone else knows about vaccination and lupus or autoimmunity & immunosuppressive treatments?
Sorry, can't really tell you much more. But the basic science of vaccines, development of immunity and immunosuppressant drugs does make certain things like that very likely. But most doctors are working with relatively healthy patients and don't think laterally. Nor do they routinely test for immunity post vaccine so don't notice it hasn't worked. Even so, we SHOULD try to have vaccines when offered because even the small amount of "practise" the immune system has had is a plus if you later do meet the bug concerned.
This is just an outsiders view - and just a very humble humble opinion - but looking in on what's going on in the USA and Britain - ( from oz ) :
A lot of these vaccines are being introduced in ( late ) stage three of trials (?) - only because of the sheer size and emergency state of the epidemic. Stage three trials are usually there to detect serious adverse - and perhaps even deadly side effects of vaccines - but because of devastating current infections and death rates - they're willing to - guinea pig the population for the greater good of the statistical death and injury rate. ie - they're hoping for significantly less damage happening with the vaccinations - than with covid - but the chance of damage is there.
If at all possible - I'd really leave the first round vaccinations to healthier people - wait to see the outcome - and then make a decision.
There are other European countries - like Germany - not willing to use the vaccines until they're proven to be more safe.
Just wait a few months more to be sure.
I think you are wrong. The stage 3 testing was finished on 18 November, so all the testing has been done. Our experts would not have accepted it before that. Waiting a few months could kill you if you catch Covid.
There have been no long-term trials as per usual to assimilate potential effects such as hyperimmunity (eg or aka in the case of Covid/AI cytokine storm) or long term damage and no trials at all in immunocompromised people or those with autoimmunity
The Oxford vaccine has not completed Stage 3 to the usual standards (various studies were amalgamated to reach the required number of participants) xxx
There's stage four of these studies to be considered. We've just been through one of the toughest four month lock downs on the planet. There are other options - like self isolating - and waiting a bit longer.
The trials for these vaccines do not finish till 2023, they have been approved for emergency use but trial is ongoing. Its on many websites including government
How very right you are....no long term trials for adverse effects, and no trials at all in those immunocompromised and/or with autoimmunity! Wise Freckle! xxx
😯🙂 Thankyou.
Hi fifinashCould I just ask you when you flare after a vaccine how is it treated?. I'm sorry and interested to read of your problems. I've had several vaccines now and had a flare after. Its gone on for years like you. The hospital said its unusual for it to go on a long time and have prescribed extra steroids. I'm on mtx as well and had hoped this wouldn't happen.
Keep well and I'm sorry you have so many health problems. Xx
It's something I've been wondering about too. My husband asked me today if I knew anything as I take mycophenolate. I've been taking part in the Zoe COVID study run by Prof Phil Spector, I received an invitation to take part in vaccine trials but decided I had too many health issues going on to risk anything. They would have probably thought the same if I had decided to accept. Hope we are okay to have the vaccine!
I too had an invitation to take part in the clinical trials of the vaccine but when I ticked that I have lupus I was immediately told sorry but I could not take part.
Thanks for letting us know Maureen. It’s what I expected but still good to get it confirmed
Hmmmm Oshgosh lm in a like mind with you, l was told by a specialist last week that the frozen vaccine was live and not got for me as lm taking steriods, l think we should get as much info as we can before putting our arm forward for a jab . take care Rodders 1941
I am interested in your post but I am now completely confused as I am on very high dose of prednisolon and I am on lupus drugs and secukinumab injection every 30days yet I have been told by my consultant in Cambridge and gp that I am priority on the list and should get very soon not sure why we are being told different things .Stay safe .
Agreed
I agree with you
The frozen vaccine is not live it is MRNA. Your specialist should know this...
cdc.gov/vaccines/covid-19/h...
thanks for reply l will ask her again about it take care Rodders
Roarah thanks for reply can you tell me what is MRNA as you seem yo be very informed take care Rodders
Basically in our body Messanger rna is naturally sent to tell our dna how to produce certain proteins.
In the discussed vaccines the companies took the genetic code of natural MRNA needed for producing the needed amount of t and B cells to fight covid without over reacting. I am guessing this part was from using samples from those who had mild disease of from murine experiments. They used this natural genetic code and synthesized it into an injectable copied version of MRNA. This ribosome will talk to our DNA and tells our bodies what to do to properly fight off the invading coronavirus infection. They have figured out how to assist our own bodies to act more how they are meant to. MRNA stimulates our own bodies natural responses.
This very technological breakthrough is most hopefully how we will see cures for many presently non curable genetic diseases, including but not limited to, Lupus .
Roarah bravo, its a pity the doctors and specialist do not inform therpatience more with information the like of which you have informed me!
l for one believe in future we the patience, will rely more on the likes of
doctor google. once again thank you for your information .
have a good Christmas take care Rodders 1941
Thanks to everyone who has replied to my post
Hi, am interested in any info given on the vaccination as in the same boat, many thanks
I really think you should all wait 2 -3 months to see how safe these vaccines are. The vaccine reaseach is not 100% completed and thus 100% safety cannot be guaranteed even for healthy people. I'm from Australia - and our media outlets are describing the early vaccine roll outs over there as using the British population as guinea pigs. The roll may well be very successful - but I'd really recommend you stay isolated just a little longer and wait and see before getting vaccinated yourselves.
I am pretty sure most of us no matter which country we live who are not in long term home care nor working in healthcare will be able to access the vaccine until next quarter anyway. There are only 800,000 vials available this year to the uk presently that is only enough for 400,000 people out of your 66,000,000 million population.
The vaccine trials are completed in the US. The FDA is currently analyzing the industry data. There is no difference between the protocol for this vaccine than any other.
I'm sure you're information is right and It's good to hear. Believe me - I'm not an anti - vaxer. It's just from long distance it all looks a bit rushed due to the emergency state of the outbreaks. I know these vaccines have to be rolled out ASAP over there - but I'd just advise caution. It's very new territory and It's all moving very quickly. There are a lot of countries holding off - waiting to see what happens in the US and UK.
Well, it is good to be concerned about the vaccine. The U.S. has to be extremely careful because of the political backdrop. Our scientists have had to give us assurance that safety will not be compromised.
The Lupus Research Alliance is also paying a lot of attention to the safety of the vaccine in lupus patients. There is a patient survey that might good to participate in.
I hope the vaccine the vaccine is safe for patients with autoimmune disease. It will be disappointing if they are unable to take it.
To be honest - it's the politicised side of all this that gives me a greater attack of the heebie jeebies.
You and everyone else! But our scientists are making sure decisions are being made properly. Have faith.
Pfizer announced on 18 November that its stage 3 testing had been completed so you are not right in what you say. The UK experts have studied the results before agreeing to try the vaccine.
I am certain that the US is abiding by the standards set for all vaccine approvals. The FDA is the toughest in the world, which is why we are still awaiting approval.
All countries have their own rigorous processes to keep citizens safe. It is your right to not take any vaccine or drug. But it is not helpful to imply your country has not met all standards in authorizing the vaccine.
Please post your sources. Many vulnerable people on this forum need this vaccine to prevent a serious illness. It would not be helpful to discourage anyone from not taking their doctor’s advice.
Kay, my answer was to Freckle1000 not to you. I am agreeing with you.Or did you mean to reply to Freckle too?
Haha .. that explains it. Yes, the companies completed their trials and then presented their applications to the government agencies for approval.
I can’t stop celebrating 🥳. Not that long ago we thought we would have to « live with this virus. » That is a big deal. Hey, at 94 % effectiveness we could be safely getting back to work and back to rock concerts.
😅😍
I'm not agueing about the finer details. It's just that normal safety protocols have not quite been met - the vaccine studies are not quite completed. I agree - the statistical odds of having an adverse effect is probably small given the data they have - but for people with chronic illness - it's more important for us to understand the potential dangers - no matter how small.
I wish. I knew the answer.
In fact, experts in immunology and rheumatology are very concerned about people like you. In a discussion I read about the groups they are concerned about lupus was the one mentioned. Betty Diamond is a frequently cited researcher. She is optimistic about the safety of the vaccine in lupus patients.
Because of the possibility of a hyper-immune response autoimmune patients are always a concern. That is true for surgery, medications and procedures too.
Perhaps think of it this way...
Any vaccine that we/you are prescribed will have to be signed off by a medical professional be it a GP or consultant. That individual who is signing the prescription has to be able to stand up in court and defend their decision should anything go wrong. They will be concerned for your safety and they will also be concerned their own professional registration. They still have to pay their mortgage etc so making mistakes with any new vaccine will be something that they will want to avoid at all cost.
I don't believe that any medical professional would prescribe a vaccine willy-nilly to an immune-compromised patient, at least I HOPE they wouldn't.
I'm going to have faith in my teams.
From a personal point of view, and this is in no way directed towards your post, I think alot of scaremongering is going on about vaccines at the moment and I don't think it helps anyone.
My sentiments exactly. Rheumatologists are focused like a laser on this issue. Lupus patients are in the radar big time because they need the vaccine more than a healthy person but their immune systems could cause a funky reaction. With the extreme immuno-suppressed, like children with leukemia, it is probably clearer that they cannot have the vaccine.
Those of us who have had covid know this could level the more seriously ill lupus patients. I am lucky my lung issues responded to inhaled steroids. There is a lot that is unknown. Do we get long term inflammatory issues more than people without autoimmune disease? I am my pulmonary doctor’s only patient who is responding to the steroids. Vaccines have risks in autoimmune patients but are those risks greater than the covid risks?
I keep remembering what a friend told me. This virus is not the flu. The pathophysiology is vascular with extreme immune dysregulation. I was lucky but would worry about anyone here with lung, heart or kidney involvement. It just isn’t good. You already have dysautonomia. Hey, I couldn’t cook I was so affected after Covid. Who knows how some people here would function after a covid infection? We have no idea how someone like you would be after this.
So, 🌷 , I support your just doing what your specialists recommend.
Anthony Fauci was just on tv. He says nothing was compromised with this vaccine. I believe him. And I know our partners across the pond are equally competent.
Love seeing how the doctors and researchers have moved above politics to an international cooperation and healthy competitiveness.
🥳
My governor, in Connecticut, just explained our possible schedule and timeline. We will be doing healthcare workers and nursing home and first responders in phase 1 a from dec15 until January 21 if all supply chain logistics go as planned.
Then I will be in phase 1b which will be all other essential workers such as teachers and store clerks, people over 65 not in nursing homes and then preexisting high risk people under 65(likely not until April if not working out of the home). This phase will take us through May 2022.
Then phase two in June is all others. Here the doctors, even with preexisting conditions, and nurses are our “guinea pigs” this speaks volumes of how safe it is perceived to be!
Hopefully it is safe and the side effects do not debilitate our healthcare personnel! If they do, then we are all up the creek without a paddle!
There may never be definitive research. Where was that research with the last flu vaccine? Would be good to hear from experts on how they make these decisions.
It is a big problem that some of the people who need a vaccine the most may also be the ones to over-react or not react. Some people cannot get vaccinations at all. No easy answers.
The research is in on deaths from covid, though. And though lupus patients overall have done well, those on high dose steroids have not nor have those with kidney disease or lung and cardiac involvement.
You are free to not jump on any band wagon. But know that will be a risk too.
It's not forgotten just not necessarily know about I think. I'm aware that GPs are expected to meet a certain number of patients to be vaccinated for public health reasons, just as each hospital dept is expected to meet a certain percentage of its healthcare workers to be vaccinated.
When I was working each year I was told that I was lowering their percentage for not having the vaccination for flu because I suffered from idiopathic neutropenia. (I needed an acceptable FBC on the day of the jab).
No nurse in the dept I worked in or the OH dept would go near me with the flu vaccine after I said that and they were happy to leave it to my consultant.
I trust my team. Especially as my Rheumatologist has been working every day since the beginning of March researching the AI response from Covid and the likihood of a vaccine on AI patients. It's made it hard to get hold of her but she's still been available and has done a brilliant job. I have faith in her.
Do I expect to get a whopping great flare after the Covid vaccine? Absolutely. But I'd rather get that that Covid.
Going back to your reply, ultimately the reason for vaccination is public health and not profit. So I hope the public do take the vaccine. But no one is being forced it's a question of personal choice.
Sue-petal it may sound strange but GPs get nothing out of immunising patients for flu - it’s a whole lot of work and sacrificed weekends and evenings every year for which they personally don’t receive overtime. The “profits” (which are laughable) go in paying the nurses and administration staff for those hours. The GPs do it for the public health benefit. My blood boiled when I saw how little money the government announced to fund the NHS for administering the Covid vaccines; a huge extra undertaking for the NHS, yet they have thrown billions at their pals in private companies offering to supply dodgy PPE.
From my research module days the cohort that they tend to recruit in the first stages need to be healthy people with no underlying conditions so they can get a baseline for reactions/side effects etc. But this is me just thinking out loud. My research module was a bit of a haze. It was interesting but the lecturer had perfected his monotone so it was such a struggle to stay focused!
I just want to mention the production of an antibody injection by AstraZeneca and a Cambridge lab which was aired on BBC Look East on 21 Nov. This is not a vaccine, rather an injection of ready made antibodies entirely bypassing the immune system and offering immediate immunity to those who cannot take the covid vaccine. It is in trials right now in major cities throughout the UK and if proves effective and safe will be available next spring. I for one, am pinning my hopes on this one as having kept my immune system controlled from lupus nephritis for 35 years, do not fancy mobilising my T cells and risking a flare. We need to be patient and well informed and there will be something for us.
Of all the recent vaccines this is the one I feel was suspect. The original dosing led to only a 65 percent success rate but in the results of an Asian dosing error dats were 90 percent when half doses were used. The FDA will likely be using more scrutiny on this vaccine.
google.com/amp/s/www.nytime...
I think you've misunderstood me. I'm referring to the AstraZeneca Antibody Injection not the vaccine - quite different. You can Google it, easy to find.
Oh the antibody cocktail. Many other companies have tried this same premise, Regeneron and lilly’s both failed in final stages. I do not trust much from astrazeneca’ former dodgy reporting...google.com/amp/s/fortune.co...
The vaccine report flaws are not the first time AstraZeneca has had study controversy and possible deception. A google search shows many more such incidents.
Pretty much the mRNA is telling your body to make its own antibodies to fight infection. For the record the concern of the vaccine in immune compromised or suppressed patients is more that it is not going to produce a strong enough reaction. With the flu vaccine it is more often that these groups have underperforming responses than Flares. This has been studied in flu vaccines in lupus patients before. Flares are more often due to infection than vaccination and it is proven that the flu vaccine lessens both hospitalizations and death in lupus patients over all. nature.com/articles/srep37817
I was referring to studies that have shown flares caused by infection are far more common than flares caused by vaccine. These studies are useful when making a risk bs benefit assessment. I am not disputing flares happen.
I'm not sure that we can expect extensive research on that particular area because it's a brand new vaccine.
I don't see how.
The unpredictability is horrid, it’s so hard to plan ahead.Take care.
Apparently there have been alot of people with AI disease who have been given the vaccine in the trail but no specific research as such. Although encouragingly no adverse reactions were noted.
In an interview with the director of a lupus clinic in Boston, she addressed potential problems with lupus patients and hope for research. She did say it is never possible to conduct research on every illness with regard to a vaccine. Sometimes they speculate based on theory or past experiences.
Autoimmune patients and the severely immune-suppressed are always a top concern in terms of vaccinations because of the direct relation to immune system issues. For that reason I am not worried the experts will make good decisions.
Lupus UK will be informed of the progress. You might want to check in with Lupus Research Alliance and Lupus Foundation of American. There are already articles addressing the vaccine concern.
My understanding is that the main concern is that the uptake of the vaccine may be less so in an immunesuppressed patient because the immune system won't be able to be stimulated into making antibodies.
Yes, that was one of the concerns mentioned. I think that happens with current vaccines too, right?
The recommendations may not end up being the same for all autoimmune patients. Patients in a flare on high dose steroids may not get the vaccine. One possibly is the monoclonal antibody that I mentioned in a post. That could prove to be safer in certain lupus patients.
They are on this. I am sure of that.
Yes Kay, that's what I heard this morning on a radio program.
Reaction to Moderna vaccine
Group 6 and Vaccine
Second Dose of Pfizer
Covid Vaccine
Same vaccine 
