Vaccines

[jenn72]

I’m just wondering 💭 are you taking the new vaccine ? I’m very wary that it might cause more autoimmune problems ? Is the Oxford one safer ?

[KittyJ]

NRAS recently updated their statement about the Covid vaccine, this might reassure you.

nras.org.uk/news/update-on-...

I doubt we will be given a choice which vaccine we have but I wonder why you think it might cause more autoimmune problems?

[jenn72 in reply to KittyJ]

Maybe 🤔 I’m listening to hear say at work. It stimulates an immune response I know but as long as it dosent over stimulate ? When I had the hep b vaccine that’s when my R A started xx Och I’m just not sure - I will have a wee read thanks 🙏🙂

[KittyJ in reply to jenn72]

I would just read reliable sources rather than listen to hearsay then your fears can be allayed 😊

[Mmrr in reply to jenn72]

Please don't listen to hearsay, best to check official statements by reputable organisations.

[AgedCrone in reply to jenn72]

What sort of medical qualifications do these people you are listening to have? I suggest you listen to your doctors ......if you don’t....you might miss out on the best thing since sliced bread!

[Neonkittie17 in reply to jenn72]

I can understand your concern, Jenn. I am more concerned I won’t trigger enough response being on Rituximab. Will you have chance to talk to your doc or rheumy about your concerns especially after the experience with the HepB? X

[LEFAURIEUX in reply to jenn72]

Mine started after Hep B also , so will wait and see how it is tolerated.

[Valerietemps in reply to jenn72]

My RA started after a flu shot.

[Neonkittie17 in reply to Valerietemps]

I’m so sorry to hear that. 😢

[Kalimers65 in reply to Valerietemps]

I had my first ever flu jab in March this year. Prior to that I was feeling really well and had little pain. Also a CRP of 12. Three days after my jab I started with painful knees. I now have very painful hips, knees and heals. My CRP is now 185. I have never been this ill. My GP admitted it was ‘ a known risk’ for people with rheumatoid arthritis if they had a flu jab. I feel angry that I wasn’t made aware of the risk. I would never have had it.

[Valerietemps in reply to Kalimers65]

Wow, that’s the first I heard that it’s a known risk for people with RA. I get told every year by doctors that I should get one. I say no every year.

[Kalimers65 in reply to Valerietemps]

I’m 68 and was diagnosed when I was 38. I’ve been really lucky because in those 30 years I’ve had periods of remission and no meds. My last remission was about 12 years. But 2 remissions were actually caused by getting flu. The first time it happened I was on my sofa feeling awful with flu symptoms and then I started to feel the inflammation ‘drain’ out of my swollen heals. Within 1 hour I was pain free and stayed that way for 3 years ( no meds). My second remission triggered by getting flu lasted 18 months but it was wonderful to feel normal.I only gave in this March and had a flu jab because of Covid and the nurse said it would give me a little protection.

About 20

years ago I read an article in the

Idependent Sunday supplement about research being done into how the flu virus could help people with RA and other immune diseases .

I’ve told every consultant all this and none has shown any interest. My present consultant in Bristol says ‘Oh we don’t know for sure the jab triggered this awful flare and it won’t happen again.’ But that’s what my thorough GP told me, ‘it’s a known risk.’ to RA patients.

I’m so sorry it led to you getting full blown RA. I think it’s totally unethical that we aren’t warned about this.

[HamHammy in reply to KittyJ]

Thx for the link. It provided good reading on alleviating vaccine fears

[Pippy25]

I think you are one of many who are wondering this and it's something we as individuals are not qualified or able to answer as we are all in the same boat in respect of these new vaccines. I think as KittyJ suggests our best port of call is to seek reassurance and information is from reliable sources such as the scientists and sites like NRAS. I think it would be wiser to make informed choices based upon our own situations and feel we probably wont get a choice in the vaccine offered but as time goes on and more is learned about them who knows what options we may have in the future and just like the flu jab there may be a range of vaccines available for different catagries. Who knows, at the beginning of this pandemic we knew virtually nothing about this virus let alone what it could do, Take care and sending some good wishes your way x

[jenn72]

I’m hoping I get the chance 🙂I have two weeks 😕

[Niao]

I understand your concerns but of course have no answers! I agree with others in that we are not qualified to answer this however, this does not stop us wondering/worrying and I too read an article the other day on this topic, on a highly regarded/reputable site, but just cannot find it now for reference, usually I bookmark things. As always, many conflicting ideas causing great confusion. There was also something about prednisolone and Covid of importance, I will try again to find it.I saw from your other posts that you are on the front line, hence only having 2 weeks to decide! I just want to take this opportunity to thank and commend you for all the excellent work you are doing!

[jenn72 in reply to Niao]

Hi thanks very much for the reply xx I have Changed job now still a nurse but in a care home. I would appreciate this if you could. Where on earth do we get good valid info so much fake news

[Niao in reply to jenn72]

Another incredibly valuable line of work, well done! I am looking but have complete brain fog and can not remember for the life of me where it is!

[springcross in reply to Niao]

Hi Niao. I do that sometimes, bookmark and then I can't find it, turns out I'm looking for the wrong heading or title. x

[Niao in reply to springcross]

I know! I'm still looking to no avail! Have found another article I'd been searching for. I'm now questioning the affects of the prednisolone on myself, after the great point you made in another post!? Whilst I feel more with it than I have done in years, I'm wondering if I actually am??!!

[springcross in reply to Niao]

I feel that sometimes and I am no longer on pred. Also I search for one that I have bookmarked say a day or two ago and when I eventually find it, there's several more below it and I think, how on earth did all those get there - I'm convinced the one I am looking for was the last bookmark I did so how can there be this many below it. 🤔😕 🙃x

[Niao in reply to springcross]

🤣🙃 !!!

[Durrell in reply to Niao]

Oh Niao, absolutely, yes I’m with you, we are all so very concerned about the vaccine. I have discussed a bit with my Rheumy & the only little bit of info I can add, as explained to me (as keen to get me off Prednisone, in general!!) is anything below 10mg daily is ok re covid. I’m on 20mg & trying desperately to lower it, but I can’t rush it it will take its time, I’m starting to lower1mg daily every for 2 weeks,. I’ll get there

Just another thought I hate taking any drugs especially RA Biologics!! But I do 🤔🎄

[Niao in reply to Durrell]

Thank you Durrell. I understand completely, I hate it too but needs must! Luckily my prednisolone dosage is coming down. Had 2 weeks on 20mg, then 2 weeks on 15mg and tomorrow will start 2 weeks of 10mg. Then I'll be on 5mg daily until I'm told differently. So ,from what you were told, I feel a bit easier. Have no idea how long Rheumatologist expects me to be on this! I am presuming you have been on this for a lot longer than me? I actually was ignorant to the fact that some had to take steroids long term, having thought it was only prescribed for shorter periods in times of flare. I've since realised this is not always the case! Very good luck to you in tapering down, you will get there!🙂

[Durrell in reply to Niao]

Absolutely, I was on 10mg for about 2 yrs to help whilst between meds, finding the one, just before Abatacept due to a bad flare & to get me moving I was put on 30mg, so I’m down to 20mg as I mentioned so now like you will slowly start to reduce even if by 1mg every 2 weeks as the Abatacept really takes hold 🤞. Anyway keep up the good work your doing great & it’s helpful inspiration to others like me, looking forward to new year ahead, where we will all be healthier & happier being pain free, it’s been a tough year for all mankind 🎄☃️

[Niao in reply to Durrell]

How right you are!! That is a long time and, of course, why you have to take the tapering down very slowly.

Thank you. I really hope the Abatacept will be the one!!

[Marionfromhappydays]

I just had to ring my rhemy hotline about something and they had a prerecorded message on there about the COVID vaccine (think they must be overwhelmed with questions about it) and they said they are awaiting further direction about it but its expected that rhematology patients will be able to receive it and it will be organised by our GPs.

So not sure what weight you can put on the word expected 🤷‍♀️

[Neonkittie17 in reply to Marionfromhappydays]

I need to talk to my rheumy re how long you leave after Rituximab (B cell depletor) before you can have the vaccine. Whether to have to have a B cell blood test to see if they’re being replenished meaning immunity is on the way back up. I don’t want to have it at the wrong time and render it less effective.

[Neonkittie17]

I thought the Oxford one had had a bit less efficacy in the trials? According to reporting, I think we, as immuno-compromised/suppressed patients will not have a big choice of vaccines and feel maybe there could be only one or two more suited to us? Maybe as long as it’s not a live one then we have to find that window of opportunity to have a non live vaccine, but not close to any infusions which deplete immunity etc,, which is similar to having the flu and pneumonia shots. I don’t expect my rheumy department to offer any information and I’ll have to chase all the way but I’m prepared to do so. It’s what o always do!

[Neonkittie17]

Yes Ajay, I’m hoping the Oxford increases up to 90% as you say. I hope we soon have some info for the most suitable one(s)for immune suppressed. I think the info has to come from the rheumy as many GPs don’t know enough about some of the biologic meds for RA, by their own admission. Only one of our 5 GPs really knows about RA/RA meds as she spent a year in my local hospital rheumy department after graduation.

[Neonkittie17]

I think we will get some of the best advice from here!

[wilbertjellyfish]

I'll be taking it....its safer than risking getting covid and that's the key point. The Oxford vacc won't be any safer, it is easier to store and distribute but they are all given by injection so it's not easier to administer. It's also slightly less effective but still more effective than flu jab and we all get it.

[Amy_Lee]

I will take instruction from my rheumy. If I have a choice, I will not. I would rather stay home as much as possible and have my mask on when I need to go out.

[janmary in reply to Amy_Lee]

I understand your reluctance, Amy Lee, but the most careful, self shielding, mask wearing, delivery washing, staying in person I know has just has COVID - no idea where she got it from. I’ll be off for a jab ASAP -

[HanaleiBa]

We don’t yet know which is the best for AI or the protocols to take it. Also, what our protections will be. Sub studies have to be undertaken as with young people/children. Unfortunately in the UK they’ll expect AI to take whatever, which is so weird to me being from the States where the guidance is to wait for now until we see how the vaccines impact AI. Shingrix, for example, was similarly not tested on AI in studies and had serious side effects for those patients - flare ups, joint pain, one of my rheumie’s patients was hospitalized with kidney failure. I work directly with the researchers working on the studies (I fundraise for health care). Anyone 18-55 and healthy should get any vaccine ASAP. The safety profiles are great and they were studied with the same rigor as any, it was faster because there was funding and regulatory buy-in to “get it done.” They look fantastic. Many patient groups were included in the various studies (cancer, diabetes), but not AI. My rheumie at Stanford, my mom’s at another place and my close friend’s at University of Chicago (all top places) are saying wait until we know more from AI patients who either take different ones or the studies are done. Remember, it’s also about HOW we take them. My rheumie, for example, had us take a round of prednisone with the Shingrix vaccine. It removed the flare up issue, but also lowered efficacy. The efficacy was still high, but I know to be careful. And please don’t “go with your gut” about which vaccine. They are completely different technologies. In the end, an inactivated vaccine like one in China or the one being developed out of a Scottish research body (to be ready fall, 2021) maybe best - old technology and fine for AI.

[orange33]

Hi I too have been having worried thoughts about this vaccine. Will it tricker off more health problems, I just about keep my head above water now in relation to health. I will have it of course but still wary.🤔

[Tourk]

Hi Jenn72

Good question, simple answer for me is not until I'm forced to.

The company behind the vaccine has an atrocious record for corruption extortion and even experimenting on third world children.

They just can't be trusted .

Saying that I understand the need for a vaccine even though most of us have already had covid.

So much hypocrisy has been spread concerning covid it is hard to sort the truth from the out right lies.

How someone who hasn't been vaccinated can pose a health threat to someone who has, is beyond me. Are they saying the vaccine doesn't work, and their is a different reason we are being forced to take it?

Most vaccines do an increadible job saving lives, others have more to do with profit.

I would always advise people to have a vaccine, but with Pfizer something just doesn't ring true.

Chris

[HamHammy]

My RA was also triggered by a Hep B vaccine and I too am worried. Have been reading your replies with interest

[Amy_Lee in reply to HamHammy]

Very sorry to know that your RA was triggered by the Hep B vaccine. Most of us here will have Hep B vaccine too. Oh, dear!

[pippin_fort]

Absolutely, I cannot wait for it! I had COVID-19 back in March and am still very unwell. I have severe asthma as well as PsA and have had pneumonia, a pulmonary embolism, pleurisy and numerous chest infections. I currently have a plethora of respiratory and neurological issues. I found out yesterday that there are numerous white dots all over my brain which may be the reason behind my neurological problems. I am having a further MRI brain scan today to see exactly what is going on. I would not wish this on anyone. My arm is ready and waiting. I cannot go through this again. I haven’t recovered since the first time. I would urge everyone to get the vaccine to avoid what has happened to me.

[TheBoys]

I d just be grateful to have the chance of being free of the worry of getting Co Vid and death & and not worry about RA .It's your choice though.

[Sheila_G]

Sorry Jenn I know you are nervous but these sort of rumours are not helpful. We will all be apprehensive when the time comes for us to have the vaccine but would you rather get covid? I will be nervous too but I believe that we won't be offered the vaccine if it isn't safe. Please remember that unless the majority of people take up the vaccine it will be pointless. There will be many thousands of people have the vaccine before us so we will see how well it is going before it is our turn. Personally. I can't wait. My sleeve is already rolled up. Another thing to remember is that possibly none of us would be here if people hadn't taken up the offer of vaccines in the past. Try not to worry. Don't listen to anyone unless they are a medical expert. Stay safe

[Bookworm55]

Oh yes - try stopping me!

[Niao]

To add to my previous reply. I really feel for you, having such a short time frame in which to make an informed decision, one you'll be comfortable with!This is such an emotive topic!

Many will have their own experiences and fear of vaccines, and convictions of the damage they may have caused, as I have had in the past too. Many will be angry at others for not taking up on vaccines. Many will fear there is not yet enough known, enough trials done etc. I can relate to each.

I know not, am just as fearful of taking it as I am in not taking it! However, I am, at this stage, intending too, mainly because I want to give my son who lives at home some piece if mind. He has to work, go out, and is paranoid he is going to be responsible for one of us getting sick. I will still have that feeling of have I done the right thing but would also have it if I didn't!

[Wobbies]

I can't wait for whatever vaccine I am given. Want to go out and about and do normal things. Will take my chances with a vaccine as shielding is not really living. Am much more concerned that being on biologics and methotrexate, I might not be bale to.

[KittyJ in reply to Wobbies]

Wobbies you can go out and about 😊 it saddens me that people feel they can’t go out. Of course it’s your choice to continue to shield and if you have other co-morbidities then of course you’re more at risk but we don’t know when we will get the vaccine and it could be a while off yet ( and going by past events it may all be a fiasco) so I’m not holding my breath.

[Wobbies]

Yes unfortunately I do have other co-morbities and have been advised by my rheumatologist to continue to shield. So, I obey as he has been my lifeline and has improved my life considerably.

[KittyJ in reply to Wobbies]

Ok sorry, 🤞🏻 you are early in the queue 😊

[Leics]

Well I have uncontrolled R.A. and I am extremely clinically vulnerable as my immune system is virtually non existent ( hypogammaglobulaemia +++) and whilst I realise that any vaccine won’t give me much coverage and I won’t get the full benefits I realise I will have to be cautious even after the vaccination but to be honest I always have been even before Covid. But what the hell if not for me I DEFINITELY will be having any vaccine offered as we at least owe it to others to try to prevent the spread and death rate of this pandemic. So yeah sign me up I’m ready with my sleeve rolled up.

[jenn72]

Thanks everyone 😍well I have the number to call this week to arrange the vaccination I will email the rheumatologist today and get her opinion xx I am so lucky to have such an amazing doctor. See what happens ? Lots of different views here I wish I could find a definitive answer. I think the political side of this skews this for me. Just looking to get the economy going again/ not sure 🤔