Meet the Other Phone. Child-safe in minutes.

Meet the Other Phone.
Child-safe in minutes.

Buy now

Please or to access all these features

Covid

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Auto Immune disease and Vaccine

160 replies

ihearttc · 28/11/2020 16:35

Can someone more knowledgeable than me point me in the direct of where I would find information about the effects of the vaccine on people with auto immune disease? I have googled but a bit overwhelmed with information and not entirely sure what I should be looking at.
I have Rheumatoid Arthritis and only take Hydroxychloriquine (incidentally the wonder drug as suggested by Trump back in April!) but I also work in a school so I’m very keen to have the Vaccine if at all possible. I’m interested in the effects of the Vaccine on my body (I don’t have the flu vaccine as it has made me really poorly in the past) but I feel this is vital to have. Is there a specific one which is better for people with auto immune conditions and if so are we likely to be able to choose which one we have? I’m way way down the list in terms of when I will get it anyway, I’m early 40’s and I’m not the medications for immuno suppressed group.

OP posts:
BobbinThreadbare123 · 28/11/2020 20:02

Thanks @scaevola I'll have a read

ihearttc · 28/11/2020 20:02

@GalaxyCookieCrumble

Hydroxychloroquine is only a DMARD (Disease Modifying Anti Rheumatic Drug) not an immunosuppressant so it’s not included in the shielding guidance. My RA is actually really well controlled, the medication allows me to work etc and gives me side effects. So while I’m not technically immunosupressed, I do have an auto immune condition (well 2 actually as I also have pernicious anaemia) and it’s the effect of the vaccine on my immune system that I’m concerned about. Generally it’s really good, I’m rarely ill despite being a TA however it often does weird and random things when I least expect it! I had a phone consultation with the hospital a couple of months ago before the Vaccine was announced so couldn’t ask then but I will call and speak to the Rheumatology Nurse.

OP posts:
ihearttc · 28/11/2020 20:06

@Phyzzy
Whilst I agree that it’s important to take it at all costs, if there is a “choice” over whether to take one which will affect me or one which won’t then I’d quite like that choice. I doubt I will get it though!

OP posts:
Shosha1 · 28/11/2020 20:10

I'm interested too as have Lupus and also take Hydroxychloroquine.

I've had the flu jab for the last ten years after being very very ill and in ICU for 5 days and spent weeks recovering.
Can't say its ever made me feel anymore than a bit more fatigued than usual each time.

JS87 · 28/11/2020 21:48

[quote trulydelicious]@JS87

I have said that I have these two concerns which for me are valid.

Do you have an autoimmune disease?

Why are you posting in this thread since you are saying that you don't fully understand autoimmunity?

Why do you seem to all the time be wanting to reassure people regarding mRNA?[/quote]
Conversely, why do you seem to want to put people off mRNA all the time?

I’m not trying to reassure people but I don’t agree with some of your scientific reasoning and I think it is good to give others a balance of opinions.

TheRealHousewife · 28/11/2020 22:08

Reading with interest.

I have several autoimmune conditions. 2 weeks ago I had the pneumonia jab. Became very ill but not ill enough for a&e. I was vomiting and had the most painful burning sensation abdominal pain. The pain was everywhere from under my ribs, through to my back and down my abdominal cavity - on a scale 1-10 I’d say a 9. I’m totally convinced my reaction to the jab was caused by an auto immune response. This makes me nervous of further vaccines.

I have a GP telephone appointment next week to discuss.

Percypigsareyummy · 28/11/2020 22:24

I asked the Organ Transplant Consultant last week at my checkup and they had received no official information through and so could not advise at present.

movingonup20 · 28/11/2020 22:30

The data that you need simply doesn't exist or isn't in the public domain yet. Unless you are either over 80 or cev you won't be offered it until next year by which time hopefully more data will be available

Phyzzy · 28/11/2020 22:31

I feel covid is the bigger risk to me so prepared to put up with pain or discomfort.

CrunchyCarrot · 28/11/2020 22:40

I'll answer from my own viewpoint of having Hashimoto's thyroiditis, an autoimmune disease targeting the thyroid, which is destroyed over time by antibodies. I also have histamine intolerance and allergies, my immune system is very reactive, too reactive!

We don't fully know why autoimmunity develops. It could be a combination of triggers, including genetics, diet, viruses, exposure to chemicals/heavy metals, injuries, disturbance to the gut microbiome, etc. Each one of us is different with respect to the cause(s) of our disease and its progress. Autoimmune conditions often 'hunt together' and if you have one you are far more likely to get more. Also just being female makes one far more susceptible for reasons not fully understood. Autoimmunity often runs in families, too. My mother had thyroid disease, so do I. Her mother had RA. My mother had RA. I am praying I don't get it too.

Even though I should be able to sort out my hypo symptoms by taking thyroid hormone, that won't sort out my autoimmunity. Doesn't help that I haven't been able to get my hypo under control, but that's another story.

I believe this is why we have to be very cautious when putting anything into our bodies, from the foods we eat, any medications we take, and of course, having vaccines, because any of these things can be triggers. Of course some folk with autoimmunity (such as lupus) must take drugs that end up suppressing their immune systems, so that is yet another risk factor that may tip the balance between not having a vaccine and having it.

We need more data!

Gilead · 28/11/2020 23:01

I’m steroid dependent and on biologics so am watching carefully.

CoffeeDay · 28/11/2020 23:07

Following with interest as I have lupus and take HCQ. I read someplace that only live vaccines are risky, and I don't think that applies to any of the covid ones? Similarly that may only be a blanket recommendation that covers everyone taking steroids or stronger immune-suppressing drugs. HCQ alone doesn't have a significant impact in lowering immunity, hence no shielding.

I fully intend to get the vaccine as I feel any potential risks are offset by the massive risk of actually getting covid. Interesting that several here have reported flu shot side effects. I've been getting them almost every year for a long time (about 10 in total). There was only one year where I felt awful, and 2 times where I felt mildly fluey. The other years were without any side effects at all. I think the reaction depends a lot on the vaccine brand & ingredients rather than your immune system not tolerating all vaccines. I've also had a few other vaccines while taking HCQ and had no problems with those.

There was a MN thread a while back on side effects from the 2020 flu vaccine with answers from regular people (aka no diagnosed autoimmune illness like us on this thread). The reactions ranged from no effect to being sick or passing out, so it seems like it could affect anyone.

Luscinia · 28/11/2020 23:48

This is from NRAS about the vaccines for people with RA. Not particularly helpful but I do think it is a matter of waiting for more information. I'm also steroid dependent and on biologics.

www.nras.org.uk/news/nras-statement-on-the-breaking-news-regarding-the-pfizer-vaccine

CrunchyCarrot · 30/11/2020 17:24

So I found this letter to the editor in the BMJ, a well-respected medical journal, re the possibility of the Covid mRNA vaccine potentially triggering autoimmunity in recipients.

www.bmj.com/content/371/bmj.m4347/rr-6

As far as I understand it, having Covid-19 can result in triggering autoimmunity, and this may be via the spike protein invoking some kind of molecular mimicry (think of what gluten can do in coeliac disease). That would mean any vaccine using the spike protein could potentially do the same thing:

antibodies to SARS-CoV-2 spike glycoproteins cross-reacting with structurally similar host heptapeptide protein sequences

This could result in an inflammatory reaction leading to autoimmunity developing. I presume it could also depend on one's genetics as to how susceptible one may be, but for those of us who have existing autoimmunity, it's not something we need re-triggering!

trulydelicious · 30/11/2020 17:45

@CrunchyCarrot

That's very helpful. Thank you.

I'm concerned mainly about coeliac disease and Hashimoto (underactive thyroid)

CrunchyCarrot · 30/11/2020 17:49

@trulydelicious I have Hashi's too, along with various allergies and intolerances.

I mean it's not a definite thing, but it's still worth bearing in mind, and clearly some scientists are looking into the matter.

Kazmerelda · 30/11/2020 17:50

@CrunchyCarrot

I'll answer from my own viewpoint of having Hashimoto's thyroiditis, an autoimmune disease targeting the thyroid, which is destroyed over time by antibodies. I also have histamine intolerance and allergies, my immune system is very reactive, too reactive!

We don't fully know why autoimmunity develops. It could be a combination of triggers, including genetics, diet, viruses, exposure to chemicals/heavy metals, injuries, disturbance to the gut microbiome, etc. Each one of us is different with respect to the cause(s) of our disease and its progress. Autoimmune conditions often 'hunt together' and if you have one you are far more likely to get more. Also just being female makes one far more susceptible for reasons not fully understood. Autoimmunity often runs in families, too. My mother had thyroid disease, so do I. Her mother had RA. My mother had RA. I am praying I don't get it too.

Even though I should be able to sort out my hypo symptoms by taking thyroid hormone, that won't sort out my autoimmunity. Doesn't help that I haven't been able to get my hypo under control, but that's another story.

I believe this is why we have to be very cautious when putting anything into our bodies, from the foods we eat, any medications we take, and of course, having vaccines, because any of these things can be triggers. Of course some folk with autoimmunity (such as lupus) must take drugs that end up suppressing their immune systems, so that is yet another risk factor that may tip the balance between not having a vaccine and having it.

We need more data!

Ditto I have hashimotos too, and 200% agree with this.
Suzyeve · 30/11/2020 19:41

I suffer from hashimotos and haven't been told to be extra cautious generally, has anyone else? I work in a school and cvid has recently struck there. I have to have contact with the kids. Am I more at risk than anyone else? Hope OP doesn't mind me jumping on her thread. Just seemed a good place to ask x

Fruitloopcowabunga · 30/11/2020 19:47

Study has started into antibodies injection - you may have to travel if you want to take part
www.bbc.co.uk/news/health-55022288

CrunchyCarrot · 30/11/2020 20:43

@Suzyeve my understanding is that we are no more likely to catch the virus, but Thyroid UK has issued this statement:

Although there is no reason to believe that people with thyroid problems who are well balanced are at any more risk from COVID-19 than people who are healthy, it is possible that untreated hypothyroidism, undertreated hypothyroidism (because the medication is not being taken or not taken properly) or poorly controlled hyperthyroidism may be at higher risk of complications from the virus.

thyroiduk.org/who-we-are/what-we-do/position-statements/thyroid-uk-statement-regarding-covid-19/?v=79cba1185463

It may depend on how well you are doing on replacement hormone.

MrsMigginsMate · 30/11/2020 20:58

Following this thread as my mother has polymyalgia.

My understanding is that this is an auto immune condition...so does this mean she will be immunosuppressed? The treatment is steroids which she is weaning herself off, I had thought once she finishes taking them that her immunity would be restored to normal levels but now I'm not so sure. She has been motivating herself through continual shielding by telling herself she will be 'free' by Easter but it sounds like she will have a much longer slog than anticipated....this will not be easy for her to come to terms with.

I don't suppose anyone knows how long it will take them to assess the safety of the vaccine in those with auto immune conditions?

trulydelicious · 30/11/2020 21:11

any vaccine using the spike protein could potentially do the same thing

Instinctively I personally would feel more comfortable with a traditional whole virus inactivated vaccine.

I'm following the list of vaccine candidates by the WHO (.pdf download)

www.who.int/publications/m/item/draft-landscape-of-covid-19-candidate-vaccines

Some of the whole virus inactivated vaccines are being developed by China/Russia so we may end up with data that is not very transparent

There is one whole virus vaccine being developed by Valneva (a French lab) which the UK Government purchased but it will contain proprietary adjuvant CpG 1018 (by Dynavax). I understand adjuvants are added to some vaccines to achieve a very strong immune response with less virus content (thus related to cost or ease of production) or when only part of the virus is used rather than the whole. I don't know currently whether this adjuvant is safe for people with autoimmune disease or not.

BungleandGeorge · 30/11/2020 21:25

@MrsMigginsMate

Following this thread as my mother has polymyalgia.

My understanding is that this is an auto immune condition...so does this mean she will be immunosuppressed? The treatment is steroids which she is weaning herself off, I had thought once she finishes taking them that her immunity would be restored to normal levels but now I'm not so sure. She has been motivating herself through continual shielding by telling herself she will be 'free' by Easter but it sounds like she will have a much longer slog than anticipated....this will not be easy for her to come to terms with.

I don't suppose anyone knows how long it will take them to assess the safety of the vaccine in those with auto immune conditions?

Yes taking steroid may make her immunosupressed, you can request GP to take a blood count if you’re worried about her. I’m attaching the draft guidelines from gov. They are still draft until we have vaccines actually available

Immunosuppression and HIV
Individuals who have immunosuppression and HIV infection (regardless of CD4 count) should be given COVID-19 vaccine in accordance with the recommendations and contraindications above. Although AstraZeneca COVID-19 vaccine contains a live adenovirus vector, this virus is not replicating and is considered safe in immunosuppressed people. Other adenovirus vector vaccines have been trialled in populations with high prevalence of HIV and shown no serious adverse events (Kennedy et al, 2017).
These individuals may not make a full antibody response and should therefore continue to follow advice to avoid exposure unless they are advised otherwise by their doctor.
Consideration should also be given to vaccinating the adult household contacts of immunocompromised adults, i.e. individuals who share living accommodation or those

Phyzzy · 30/11/2020 21:39

So do DMARDS make you immunosuppressed?
My bloods are normal. I'm on a very low (reducing) dose of steroids and HCQ and sulphasalazine.

Suzyeve · 30/11/2020 21:44

[quote CrunchyCarrot]@Suzyeve my understanding is that we are no more likely to catch the virus, but Thyroid UK has issued this statement:

Although there is no reason to believe that people with thyroid problems who are well balanced are at any more risk from COVID-19 than people who are healthy, it is possible that untreated hypothyroidism, undertreated hypothyroidism (because the medication is not being taken or not taken properly) or poorly controlled hyperthyroidism may be at higher risk of complications from the virus.

thyroiduk.org/who-we-are/what-we-do/position-statements/thyroid-uk-statement-regarding-covid-19/?v=79cba1185463

It may depend on how well you are doing on replacement hormone.[/quote]
Thank you. X

Swipe left for the next trending thread