This link
vasculitis.org.uk/wp-conten...
has just been put up on the VasculitisUK forum. It is to comments from a foremost authority in the UK on vasculitis. You will note that they gave the same responses as we have on the forum for the last few weeks! But here it is from the horse's mouth.
And the bottom line? Have the vaccine if you are offered it.
Like it!
Thank you so much for this,i will be waiting with arm ready.😂🤣x
Thank you, and yes, as an when offered I will be taking up the offer unless there is different advice between now and then
Many thanks! It's what my rheumatologist told me last Thursday. (She also said that if anyone with GCA on the dose I'm on ( currently 15mg) were to contract Covid "you would get it badly". Hence recommending the vaccine.
That’s interesting. I had COVID back in March, when I was on 35mg Prednisolone and there was no help or support available from the NHS or my GP. I made a full recovery in ten days or so.
Not sure that’s strictly true! But you don’t want to find out that’s for sure.
I will have it as soon as it is offered
Do they include prednisone as an immune suppressing drug? I didn’t see it listed.
That is presumably because they don't consider it a problem. It isn't used as much in vasculitis in general, things like rituximab and cyclosporin are used and they are both truly immunosuppressive medications.
So if you are on prednisone and not one of the other drugs you should take it? What effect would it have on the immune systems of those taking prednisone?
Do you think in the many thousands that were given the vaccine non where immune suppressed?.......I only ask because it always says they don't know how we would be after a vaccine....or have I missed that. I am on MT X injections so like others I have wondered this, however I will be first in the queue......
Interesting read. Will definitely have the vaccination if offered.
A very useful document, thank you. My main concern was that the vaccine would contain an "adjuvant" because flue vaccines have given me flares in the past.
Apparently a study has found that in a few people, and may I add "a few people" had PMR relapses caused by the "adjuvanted" influenza vaccine.
I can't find the link, but it it titled "Relapse of polymyalgia rheumatica following adjuvanted influenza vaccine: A case -based review. It was published by European Journal of Rheumatology by Margaret F Bassendine and Simon H Bridge. Hopefully the Covid vaccine will not cause me to flare.
If it does - just think what the effect of a Covid infection could be?
Yes I agree !
But for how long will we be secure of covid???Is it worth the risk??? I will see what happens first, will be the last to take it!!
“Is it worth the risk???”
Is it worth the risk not having it?
Catching Covid-19 and possible death or vaccine and living - I know what I’d choose.
I absolutely agree with you, just, I do not like to get another autoimmune disease, and I look for that safety too, and would like to know about for how long it's hoped, the covid will not mutate, if they know?? or otherwise the safety would be over !!
I don’t think anyone can answer whether the virus will mutate...we’ll have to wait and see......and obviously no-one wants another autoimmune illness.
But as I said, if you catch COVID you have more chance of dying with that than with another autoimmune disease.
You are absolutely right, and all should take the vaccine, we will find out everything...later!
There is so much unknown about this vaccine that I am sure many problems will com out of the woodwork after thousands of people take it. We are deeply in a dark place with Covid. We are between the devil and the deep blue see. So many things could go wrong, and if you don't take it you risk dying from this terrible virus which came from China.
I’m just so grateful for all the efforts of the brave and selfless volunteers who have taken part in the various vaccine trials without whom we would not have any vaccine at all nor indeed the luxury of being able to choose whether to have it or not. I know what my choice will be.
I do agee very much, they made this vaccine so fast, I would be extremely happy for All if it is 100% safe !! And what if the virus mutates, only a little, what they all do??I am suspicious, it sounds a little too good too fast, but anything can happen , we are positive thinking, always !!
Yes, it's always good to stay positive, but the old saying still prevails. If it sounds too good to be true, it probably is. The only way at the moment, if we are going to get out of this pandemic is to take the vaccine if we can. The future is unknown, but one thing is sure, we will find out.
YES, we will find out, so or so!!!
It hasn't been done any differently from other approvals - except things were done in parallel without big gaps between and funding was never a problem. Mutation doesn't appear to be a massive problem, the spike hasn't mutated significantly in a year in the respects that matter with the vaccines. Even if it had, it is being monitored constantly and the technology allows for speedy adjustment, like sewing an extra button onto the standard outfit.
And as for China - was it? Even that isn't proven - what is certain is that Covid and a documented "strange pneumonia" was already in northern Italy in November, even before anyone in China had noted it.
Suppose it depends how you look at it. But not to have the vaccine if you CAN have it is, IMHO at least, very selfish. If enough people don't have the vaccine then it is unlikely we will ever be able to ife relatively safely with Covid - because Pandora's box is open and it is out. The vaccine is Hope hiding at the bottom.
just would like not to get another autoimmune disease because of this vaccine!!
Hope is eternal, if you believe in God, God help us!
I have multiple allergies to antibiotics and do not know if the vaccine would send me into shock , as has happened with two volunteers. I’m currently on 7mg Prednisolone for GCA .Do you think it would still be recommended ?
That’s something you need to discuss with medical team - we really can’t answer it.
Only a medical team can advise on that - and one that is closely involved with the vaccine if it comes to that. If it potential anaphylaxis that you are talking about - probably not at the present.
👍😊 Thanks Pro
Helpful, thank you.
Thank you!Happy Holidays, be safe.💜💜💜
Many thanks for the information.
I saw this on the FDA website - I would be worried because of my multiple auto - immunities already. fda.gov/media/143557/download - the side effects are a few slides down.
If you mean the things listed in slide 17 those are POSSIBLE events, events already seen alongside the use of other vaccines. Not events they have seen or even expect.
It has been claimed in the past that G-B syndrome is caused by vaccines because a few cases were reported in people who had had a vaccine shortly before. However, when the figures were compared with the entire population, the incidence was no higher with than without a vaccine history. The same applies for autism and the MMR vaccine - the MMR vaccine is given at the sort of age that autism often manifests and so it is impossible to say a case was due to vaccine. However, comparing the figures at the large scale - it is no more common in vaccinated than non-vaccinated children.
If you have multiple autoimmune disorders (or maybe it is actually one syndrome which should be called Slosh syndrome) then I think you probably have far more cause to be worried about catching Covid19 since it is becoming quite apparent that long Covid is some form of autoimmune vasculitis (or other a/i condition) triggered by the virus itself. I also suspect that waiting for everyone else to have the vaccine and achieve potential herd immunity may mean you spend a lot longer in isolation avoiding the virus.
I have hashimotos and sporiasis. I also react really badly to chemical - so cant take a headache tablet or an anti-histamine. All my vitamin supplements have to be free of fillers too. Yes was wondering about the vasculitis. Just listened to a guy been interviewed on the FDA and although very pro these RNA vaccines he did not rule out auto-immunity. This may prove interesting:
Thanks for the info PMRpro. My GP has contacted me, and I (plus OH) will gratefully receive Covid 'jab' next Wednesday with the second dose booked 3 weeks ahead. The more of us who accept the vaccine, the sooner we can get back to some form of normality.
Our cousin had hers as one of the first in Preston - she is 75 I think but volunteers at the hospital so was classed as vulnerable. Just hoping my daughter gets one - works on Covid ICU this time round.
She deserves to!
They should all be first in line - the population has depended on them.
Thanks so much~!! I've passed this on to as many as I know how~!
Outcomes of COVID-19 in patients with primary systemic vasculitis or PMR
Maybe the second Covid vac is an "overkill", for PMR/GCA patients.Sign up to the COVIDENCE UK Study and contribute to the fight against coronavirus. - Another chance to helpAN EXPLANATION OF PMR AND GCA - A why and how of steroidsGovernment advice for the shielding group on the vaccine - including the immunocompromised
