Auto Immune disease and Vaccine

[ihearttc]

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.

@Abraxan

I have psoriatic arthritis and take immunosuppressant medication. My consultant and the arthritis charities and websites all say that it's fine to have the vaccine, and that any of the vaccines are safe for us to take.

They do advise talking to your consultant regarding medication if there could be an issue.

Same here. As I’m on biologics I was group 4 and have had my first dose of Pfizer. I asked on the day and was told that this was the preferred vaccine for people in my situation.

I was fine, painless and no side effects although at the moment I’m 11 days post vaccination and I feel like I have a very heavy cold, quite unwell actually. I’m concerned that I picked something up at the vaccination centre as otherwise I don’t go out. I’ve been feeling ill since about Friday and I’d expect a cold to be improving by now.

DH had the Oxford vaccine last week, he is on biologics for crohns - he had mild flu symptoms the next day and a sore arm. Seems fine now.

Lupus and under active thyroid here, on hydroxychloroquine, mycophenolate and prednisolone. Plus levothyroxine. Had the AZ jab a few days ago (been shielding). Have felt a bit under weather and nauseated and my arm is a bit sore but otherwise fine. Lupus Uk are encouraging patients to have the jab. Older relative with under active thyroid had the Pfizer jab and was fine.

I am group 6 from what I know.

Was initially told to shield but then told I didn't need to as not taking biologics and I only have steroid injections 2-3 times a year rather than the tablets. I have methotrexate by injection weekly and then sulfasalzine.

Since catching covid 3-4 months ago I now have two blood pressure medication which also makes me CV apparently.

Immunosuppressed people can't have the current vaccines but will be able to have the antibody one that's just started trials

I know two people - one with Crohn’s and one with RA who have had their first vaccination recently. Both in their 70s. No issues so far.

My miles is immunosuppressive (due to steroid treatment for RA) and had had the az vaccine.

MiL

I've had the AZ
Autoimmune neutropenia, hashimotos and more. On Xolair and GCSF
Unwell after vaccine for about 24hrs with temp/shivering/sore arm/headache but feel fine now

Oh and group 4, CEV

I'm worried too, I have Fibromyalgia, ME/CFS & Underactive Thyroid. When I have had the flu vaccine I have ended up with pneumonia, but never suffer from colds & have only ever had flu twice in my life. I'm managing as well as I can with my conditions & don't want to risk them getting worse, I would say I'm low risk for Covid as I am housebound & only have contact with my mum & ds, my mum has had her Covid vaccine & like me is housebound, ds is tested every week for covid through school.

Immunosuppressed people can't have the current vaccines

Not the case, from Crohns and colitis UK..

www.crohnsandcolitis.org.uk/news/latest-coronavirus-vaccine-for-people-with-crohns-or-colitis#no-vax

My daughter has an ai disorder and had the az vaccination last week. She was told that it may not be AS effective in her as others without an ai disorder but that's the only negative.

Just to add - she is on a cocktail of drugs including steroids and immunosuppressants

Please read the letter I attached from my hospital above. I’m on immunosuppressants and have had the vaccine.

I think the incorrect comment needs deleting really.

My brother has rheumatoid arthritis and had the Astra Zeneca vaccine a couple of weeks ago with no ill effects.

I have the same situation as the OP and I'm feeling that there is some chance I'll get some side effects/flare after the jab as my immune system swings into action and attacks invading spike protein and the previously identified treacherous joints etc etc - but that it is only whatever it will do if I catch actual covid, but more mild, so I'd rather have the flare on a known date and not get hospitalised with breathing issues than get the flare and full on covid at the same time later.

@BestZebbie

I have the same situation as the OP and I'm feeling that there is some chance I'll get some side effects/flare after the jab as my immune system swings into action and attacks invading spike protein and the previously identified treacherous joints etc etc - but that it is only whatever it will do if I catch actual covid, but more mild, so I'd rather have the flare on a known date and not get hospitalised with breathing issues than get the flare and full on covid at the same time later.

I have the same feelings. I don’t have RA my longest AI disease is T1 diabetes and, hashi thyroid, PBC and celiacs. Under 2 different medical teams, not on immunosuppressants. spoke to one specialist nurse today. It’s unlikely that any data any of us will be able to make any sense of in relation to AI and vaccines for a good while yet. So what’s the option live in self-imposed lockdown until then (don’t think my employer will agree to that if I’ve not taken the offer of the vaccine) and if I go to some form of normality unvaccinated and catch Covid any trigger of more autoimmune conditions is probably going to be higher than anything the vaccine might trigger. I’m booked in for the Pfizer vaccine on Wednesday and am feeling apprehensive

My dm has RA and had the vaccine. She's on methotrexate.

Hi, I have two autoimmune liver diseases and have taken immunosuppressants and steroids for many years. I’m also early 40s. I am shielding on NHS advice.

I did read a while ago that some people who are very severely immunosuppressed or having treatment for certain conditions can’t have the vaccine, so I had been quite worried about whether I would be able to have the Covid vaccine.

I asked my hospital consultant’s advice about whether I could safely have the Covid vaccine. I was told, either Pfizer or AstraZeneca would be fine for me to have, and they recommended I have it, even though at this stage they do not know how good the immune response would be because of my condition and medication, but that whatever protection the vaccine gives is better than none. I was also directed to this statement from the British Society of Gastroenterologists, the update is was published 13 Jan 2021
www.bsg.org.uk/covid-19-advice/a-joint-statement-on-vaccination-for-sars-cov2-in-patients-with-liver-disease/

My own experience is I had the Pfizer vaccine first dose over a week ago at the local vaccine hub and have not experienced any side effects.

I found the route of seeking advice from my own hospital consultant and specialist nurse was helpful, and also having the reassurance of the above statement from several medical organisations, which mentions one of my conditions.

Fully appreciate every body is different, and also that there is a wide spectrum of levels of immunosuppression. I’m lucky in that I seem to be fine with the flu vaccine so didn’t have a concern in that way. Hope you find a way forward that you are happy with. Best wishes all fellow immunosuppressed folks, these are tricky times x

Haven't read the full thread, but I found this very useful (found it as a link on the crohnsandcolitis.org.uk website) assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/948757/Greenbook_chapter_14a_v4.pdf

Interesting thread.
I have RA and am on HCQ, Sulphasalazine and a low dose of prednisolone. I don't think these drugs are considered to be immunosuppressants.
I had the AZ vaccine 3 weeks ago and apart from a sore arm no reaction. However I have in the last couple of weeks had what I would consider a minor flare - aches and pains and fatigue. Most likely complete coincidence but I wondered if there might be a connection. Perhaps a sign that my body is producing antibodies?

I am going to be taking part in a trial with Virus Watch at UCL. They are testing antibodies every month from February to August to see the impact of vaccine. The test differentiates between infection and vaccine induced antibodies.

@Pause

they do not know how good the immune response would be because of my condition and medication

@Nixx2121

Under 2 different medical teams, not on immunosuppressants. spoke to one specialist nurse today. It’s unlikely that any data any of us will be able to make any sense of in relation to AI and vaccines for a good while yet

Yes, I think there are two issues in relation to autoimmune disease and vaccines.

It's whether the vaccine will be effective (if one is on immunosuppressants) and whether the vaccine can induce an autoimmune flare up of some kind.

I have coeliacs and Hashimoto. Not on immunosuppressants and will not be offered the vaccine for a while, but any information coming out is helpful.

I have psoriasis and on a Biologic and in group 6. Had the Oxford AZ one on Saturday. No side affects at all. Not even a sore arm.
But the issue is whether my immune system will
React properly to it or not. They don’t know.

Crohns Colitis UK had an excellent video about this with a range of experts earlier in the year (possibly even over Xmas), a lot of the advice would be applicable to other auto immune conditions I would assume

If any of you are curious whether you have antibodies to Covid-19 (either from natural infection or from having the vaccine (obviously you should wait 3 weeks or so for antibodies to develop) then do check out the new BioCard finger prick test. You can do it at home, send off the tube with blood, then they will notify you of the results. It's far more accurate than any of the other antibody tests as it excludes some of the commonly cross-reacting antibodies. It's priced at £99 but you can get it at a discount of £44 by entering the code CARE at the checkout. I think it's well worth doing if you want to know.

covid19biocard.co.uk/product/biocard/

I am not getting any commission for this, by the way! I just came across it and was impressed. My DP has sent off blood as he wonders if he had Covid last year. Antibodies have apparently been detected in samples even a year after infection, so that's pretty amazing.