If you scroll down to who should not take this it says if you are on Rituximab & a whole other lot of Biologics " you should speak to your doctor who may suggest you stop taking it"
But maybe the under 65 vaccine says that too?
Does anyone know how to " stop taking a drug infused 4 months ago"?
Sorry to have gone on & on about this, but like a lot of people I'm sure, I'm fed up with feeling ill from drugs doctors tell me will make me feel better.
Now that I have found one that does, I'm not taking any chances of messing up!
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I looked it up too and it says you shouldn’t have it with concurrent use of immune suppressants which I assume means if you want it, you have to stop your treatment until your body is free of the drug , have the vaccine then wait again presumably before you restart the biologic treatment. As you say with your infusions this is really difficult as they’re 6 monthly etc.
I believe Downtime is right, in that these biologics would generally just be stopped shortly before and after flu vaccine, to maximise its chances of fighting off flu. As you say, you can't really do that with a 6 monthly infusion, but generally the rule on vaccines is to not have it too close either side of your infusion, as your rheumatologist had said with the previous type of flu vaccine. Also, worth bearing in mind that when they list medications that may be an issue, some of these drugs are used in other conditions, such as cancer, where it would be having much more of an effect on the immune system than it would at the doses it is given for RA. I'm not medically trained, so cannot tell you what you should do, but I hope this information and the information on your other thread will at least help with the conversation.
Thank you Victoria......I spoke to my Biologics Nurse this morning, who had all the information in front of her & she told me being on Rituximab I should NOT have the FLUAD Vaccine.
So once again a Specialist Nurse had the answer...I should have asked her first.
Obviously this advice only applies to me, & anyone else deciding whether to have the vaccine should contact their Biologics nurse for personal advice. It may be OK for some people...but do take advice in plenty of time.
Thank you everybody for putting up with my rantings....I will sleep easier tonight.
I think part of the problem is that this vaccine is new, so there won't be a definitive answer out there, and medicine is not an exact science, so some in rheumatology will advise patients that they can have this, where others will say they shouldn't. It doesn't mean someone is 'wrong' just that the world of medicine is not always an 'exact science' and it is up to the individual teams to interpret the evidence and apply it to their patient.
As you say not an exact science..and with a new vaccine ......GP's have very little interest in RD patient's questions anyway because they know they usually won't know the answer....to most GP's Biologics are still a mystery, but they won't admit that unless pushed.
Thank goodness for the specialist nurses....I really should have asked there first.....but in the unit I attend they are so very busy, I didn't want to disturb them.
I hope anybody else needing information will get a definitive answer faster than I did!
Oh but we do have some facts even though not conclusive. We do know that the four strain one is more effective than the three strain one, we do know that it is more expensive, we do know that there are unanswered questions conserning the adjuvant, especially for those who are on immunosuppressive medication. So everyone of us patients want to have the best protection. In other words it should be explained to us why the over 65s will not get the same protection while at the same time we are told this is the most vulnerable group. We should be informed about the adjuvant and its effect on an older immune system as well as on an immunosuppressed one.It is not up to the professionals to decide without our concent and the real facts, what flu shut is best for us.
Yeas we know on paper what the vaccine is.....but every single one of us will have a different need as far as any vaccine is concerned, that is why I pushed hard until I found a clinician who works with 65+ patients, understands the drugs I am on & understands the chemistry & known interaction of Fluad.
So anyone who is concerned should ask their clinicians well before their vaccination date......it's no good turning up expecting to discuss it on the day. A lot depends on why your system is immune suppressed & on your general health aside from whatever AI condition you have.
I was fortunate that at my clinic the nurses are all Specialist Biologics Nurses & have already been dealing with FLUAD & they are not giving it to 65+people with RA on RTX. I didn't ask why...I just wanted an answer should I have It? Maybe if I was on another Biologic the answer would be different.
I am very glad I kept badgering away....but maybe I won't be so pleased if I get flu?
Yes you do have a special situation, and did good work pushing! In a way also all 65+ Ra patients have a special situation, they are even less protected than the healthy 65+ that already are vulnareable but that was chosen by NHS not to be protected against the B strain that killed so many from this group last year.
I honestly don't think NHS England have a vendetta against us oldies. They have obviously taken advice from the boffins who have studied how the different viruses mutate & rotate, & gone for "best available in the circumstances".
We all have take responsibility for our own health these days.....get all the information possible , take notice of it & share it like you do for us on this site,
There was a previous discussion about this - it seems that the inactivated vaccine is OK, but the quadrivalent one offered to under 65yr old not. If you put influenza in the search box you should find the previous discussion.
I found the discussion & am more confused than ever...I'm going to email the FLUAD website to my Rheumy nurse tomorrow....if I hear nothing back from any of the "clinical professionals" I will make up my own mind...& not have it.
So Flued boosts the immune reaction for the three strains it covers. The large number of deaths in 65+ age group last year had to do with the fact that the vaccine did not cover the Japaneese B strain which now the four strain new shut for the under 65s covers. In other words the 65+ ( also those who are immune suppressed ) Do not get better protection since the B strain is still not covered. Here some reading about the current situation.
Unfortunately I had the FLUAD in good faith and two days later woke up with acute tinnitus, which I still have and it's gradually driving me nuts! Nothing will convince me that FLUAD was not the cause even though my GP dismissed any possibility when I mentioned it to him yesterday, which was understandable I suppose as he appeared to know very little if anything at all about this new vaccine.
After reading the posts in this thread, plus others, I can feel myself rapidly slipping into angry mode...time for another handful of tramadol methinks!
I now wish I had gone on my mission to investigate FLUAD sooner.
I do hope the tinnitus might fade when the vaccine is absorbed into your body.
Don't waste energy getting angry...just try to chlll & know you are at least protected from some strains of Infuenza.....although I know you must feel very badly served by your doctor.
Thanks AC, I'm hoping it will fade in time too. I heard it said somewhere that it should within a few weeks if caused by the flu jab.
Not so much a case of being badly served by my GP, more like the NHS , at least by those in charge of this years flu inoculations. Not only by a lack of guidance from what I've read, also why did they start messing around with vaccines if there wasn't a real problem? My understanding is the inclusion of the adjuvant is to boost the immune system. Surly all the over 65's would benefit more by having the 4 strain vaccine like the under 65's instead of this 3 strain FLUAD. I'm thinking this is mainly a money saving exercise as for one thing, correct me if I'm wrong, I believe less vaccine per injection is needed, plus there's probably other savings involved. Either that or they want to kill us off, which makes more sense as that will save even more money...I'm joking there!...I think!
Apparently we a annually normally receive three or four new strains of flu virus from China. They send these strains every year to the west but this year for some reason they haven't sent them ....so we in the west were short on viruses to test or choose from.
Some were saying it was in response to Trump putting huge tariffs on steel imported to the US from Chinna.....but who knows?
Do you know if this FLUAC has been used in any other countries before us? Also, any idea how this concoction would have been tested or trialled? Would think it would have to be for a far shorter duration of time than many other meds.
They mix up a new influenza vaccine every year don't they.....depending on World Health reports on which flu is where ....so probably the same amount of time & trials as normal..but I guess we will never know.
It's just this year they have announced age related vaccines which has led to doubts that one is better than another.
Hopefully whichever one you get......it will work better than last year.
I've just read an article published by "Seqiras" the drug company that manufactures the FLUAD adjunivated vaccine in the UK. They claim it has a long track record of over 20 years and has been used in countries around the world including Europe, USA, Canada and Australia. They include some data for their clinical trials. They also report a higher percentage of systemic reactions post-immunisation to FLUAC when compared to the conventional vaccine, but claim that most reactions were transitory, typically lasting only a day or two and are mild to moderate in nature. No other details or figures were given.
Never thought I'd see the day when I'd be researching medical matters such as this. That tinnitus must indeed be having an effect on my brain.
edit...another thing that comes to mind is if there's any point stopping biologics or DMARDs for a week or two if many of these drugs remain in the body for weeks or months. Baricitinib, which I'm currently taking, being an exception as I've been told that it's out of the body within a couple of days.
Hi Cathie...thank you for that info......yes I have had thev Flu vaccine for the last few years that I have been on RTX ....I had flu this year having had the vaccine, but it was the first time I'd had it, so I thought it was just bad luck.
I was booked in to have it this year, & until I saw a prescribing pharmacist for my annual prescription review - who saw I was on RTX & was down to have FLUAD, that I started to wonder, she said to check with my rheumatologist before I had the jab.
Well both Rheumy & my rheumy nurse did not answer my query......which was unusual - as they do usually reply.
I eventually spoke to my Biologics nurse who gives me the infusion & she said no RTX patients at my unit were being given FLUAD, & if I had it I couldn't have my infusion in December.
Well RTX is suiting me well.....I didn't want it cancelled .......so I cancelled my FLUAD appointment.
I go to a practice with 8 GP's & tbh I wouldn't recognise half of them, nor them me......so nobody questioned the cancellation.....which kind of says it all.
I’d check further, I’m not eligible for the enhanced vaccine but there doesn’t seem much clarity on it yet! If I come across more information I’ll post it.
I have't got time to do any more checking Cathie....my infusion is due 3/12.....I was very close having the vaccine booked for late October...if I get different information now & have a flu jab, my unit won't give me the infusion......as there will be no proof of what I have had.
I'm quite relaxed about not having it.....will just try to be be careful & not hang around in crowded places....but I can't think how I picked it up last year, so Qué será, será!
After 20 years of RA drugs, foot surgeries, injections, allergies etc,etc, I now just go with the flow. RTX works well for me so I have to just "accept".
But I agree ..I usually go away at Christmas, but with my 2nd infusion now due on17 December I dare not book anything for fear I have a wobbly.
I had to stop infusions after a post viral rash in February & that has moved them to the December dates. I'm going to see if I can maybe work out how to drift my dates, but already have a trip booked next February...so can't really see a way round it.
I never have had a bad reaction......just a bit if a cold once, but bet your bottom dollar if I splash out for a sunny holiday something will go wrong. Luckily my old fall back apartment in the Canary Islands is available, so I could go there...but last year flights were £365 each way the week before Christmas! I have better things to spend £700+ on than flights!
I'm wading in from a pharmacy prospect I've I had the quadrivalent as under 65 just a very sore arm injection site, but the fluaad or trivalent has the adjuvant, and added this is an ingredient designed to increase the immune response to the vaccine, The reason people with Ra are worried is that RA is caused by an overactive immune system and a lot of ra meds are in fact drugs that suppress the immune system to does this help explain things
Yes I think we have understood that...what I personally had a problem with, was apart from the medical staff who actually give the meds we take...nobody I could contact had any idea what to advise.
I held off contacting the unit as they really are so busy they don't have time to answer questions from worried RTX patients.
As you have probably read I was alerted, purely by chance, by a prescribing pharmacist who saw my GP had put me (on RTX) on the list to receive FLUAD with no consultation with Rheumy.
I spoke to a local pharmacist, who was sympathetic but said she did not have sufficient information to hand, to give me any advice,
I tried to contact both Rheumy & Rheumy nurse,& got no reply. Eventually I did contact my Biologic nurses at the unit where I receive my infusions & she said I should NOT have the vaccine. She said if I went ahead & had the vaccine, I would not be able to have my infusion....no patients on RTX at this unit would be given their RTX infusion if they had received the FLUAD vaccine.
That, rightly or wrongly, decided me not to have the vaccine. I cannot chance having to go back to see sawing between RA drugs that haven't worked for me for twenty years, on the off chance FLUAD might prevent me getting flu. RTX is working for me with very few side effects.
This morning I read in the Sunday Telegraph that last year the Infuenza vaccine used only protected one out of ten elderly people. Unfortunately I was not that one....I had the vaccine & I had flu.
Basically lack of credible widespread information seems the reason so many people are so worried.
Don't worry I am calm Simba.......just really irritated supposedly qualified NHS staff would/could not reply to my questions,
I'm getting a bit fed up with the God Complex of "I don't know, but I'm damned if I'm going to tell you that".
I wasted days trying not to bother my very busy infusion unit, when my GP & Rheumatologist should have asked the question for their patients on Biologics, back when they knew about this new vaccine, way before we did!
Yes they are busy...but their patients are the ones they should be being busy about!
I can well understand your aggravation. These meds that are handed out in abundance to the chronically ill should be well controlled and their effects known to the people administering them. Feels sort of unsafe that it too often ( as has been seen even in this forum) the control is left to the patients.
I’ll let you know if my curiosity gets the better of me and I find anything out. Hope you get away around Christmas, things might be tricky for a while after March.
Oh do you really think so? Look at a map of the EU! If they try to stop us flying over their air space...how will they get out if we retalliate?
The EEC will not suddenly be allowed to issue worldwide Aviation Licences!
Flying to the West with detours will cost them a fortune......& what large airlines have they got anyway ?AlItalia is teetering,Iberia is owned by IGA, the same group as BA ...LH & AF are not big players these days...all the profitable Middle East Airlines want to fly West.
Unlikeable as DT is.......he will want those airlines to keep flying their dollars to the US.& much as 'Le Petit' M. Macron thinks he will rule the new EEC, with Frau Merkel on the back foot...even his wife in an interview with GQ Magazine - said he is getting too big for his boots.
I bet it will all calm down when things eventually get sorted out,& everybody stops throwing their toys out of their prams.
If it does all go pear shaped I will be living in Tenerife as that is where I shall be on 29 March! Could be a lot Worse!
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