I am sitting so high on the fence on this I've got to decide which side to fall...but I just don't know.......
I emailed the manufacturer & got a very swift, but not particularly helpful reply......see pic.
As you can see I asked about suitability to take when on RTX....
So far no reply from my Rheumy or Rheumy nurse as to what they advise. I spoke to a pharmacist in a pharmacy I don't use, & she said there is so little known about it she couldn't really help. But when I asked would I be able to get the under 65 vaccine, she said she understood NHS GP's had been instructed not to give it to over 65's.
So here I am back at square one.
i am now going to ask my Biologics nurse.
Written by
AgedCrone
To view profiles and participate in discussions please or .
22 Replies
•
I am right there on the fence with you!!!!! Let us know how this works out!!! : (
Well at the moment, if I can't get the under 65 vaccine..I won't be having any vaccine,
For the first time in 20 years I am not chopping & changing with meds that either don't work , or make me ill!
I am not willing to chance a bad reaction & have to miss my 6 monthly infusion.
At the unit I go to you can't just have it the next week....last May I had to "drift" my infusion & it took two months to get another date. In those two months all my symptoms started to reappear,& when I did get the infusion it took another two months to start working.
But try getting a GP to listen long enough to "get it"!
I also am on the fence with this. They say the vaccine has something in it to boost the immune system yet the aim of treatment for RA is to suppress the immune system and we are always told not to try to boost it! Like you say though, trying to get GPs to understand that will be hopeless. If I can't have the vaccine for under 65's I won't have it at all.
So... the manufacturer has responded to the disease not the medication you requested meaning the prescriber isn't in a position to make an informed decision because they've not answered the question. Brilliant.
I hope when they do reply either your Rheumy or Nurse Specialist have more of an idea. Or, maybe it's worth asking your Prescribing Pharmacist, maybe he/she will have more of a clue, or at least know who will?
The prescribing pharmacist was the person who gave me the FLUAD leaflet & quite honestly said she didn't know. Said to ask Rheumy...but I was too taken up with other things I forgot .
The pharmacist I spoke to today said the nhs have made a right mess with the distribution. She can't start giving the vaccine because she has insufficient info ....especially on people like us with AI diseases.
The way I look at it is ......I have only had the vaccine for the last 5/6 years.Before that never had flu. This year had flu & lived,so reckon I can do the same again.
I think given how that particular vaccine works, by boosting the B cells, which negates you taking rituximab I'd be tempted to so the same. Let's hope should you be unfortunate & get flu you win again!
i'm no bio chemist...but how can the rheumatologists & NRAS have missed that? Maybe I've got it wrong because I don't exactly understand it? B cells are multi cellular..maybe it's different cells?
Is it because they haven't looked(or cared).... they have tunnel vision on their own speciality, or because they have not bothered to investigate because "that it is down to the GP"?
When at least 75% of GP's don't have a clue how each Biologic works!
Whatever...until I get an answer from somebody I trust...no one is vaccinating me!
Here is something that explains more. Did also read a more thorough study on the risks of the adjuvant. It stated that the risks are smaller than the gain and that not enough research has been done on the topic. That the public has not been told all that is known since vaccination of as many as possible is important. The two different flu shots offered has made people suspicious especially as certain groups are forced to take one or the other. Concerning the protection of the two, cannot see how they would be equal since one protects from four strains of virus and the other just three, even though boosted. Since it is also known that the flu shot last year gave very poor protection because it only covered three strains.
This is very interesting, I have Nodal marginal zone B Cell lymphoma atm going through chemo. I certainly don’t want to risk boosting my B cells as thats what the chemo is trying to control. I asked my specialist nurse last week about the flu jab and she said to only get it the week before my next treatment which every three weeks. My hubby asked his doctor when he was getting his flu jab about me and she said to wait till treatment is finished. Think I will wait a while. I don’t think doctors have read up on this flu vaccine.Thanks for posting everyone.
Hi Lizard 28 .....very sorry to hear you are going through chemo...thankfully it is so much more successful these days....very good luck with it.
The flu vaccine...I quite agree with you & in fact I am going to try to speak to my Biologics nurses today, in a last chance effort to get some guidance,
I am still awaiting replies from my rheumatologist,Rheumy nurse & GP.
As you say...no one will commit. If they said 'we don't know' I'd be OK with that & make up my own mind....but just being ignored makes me angry.
Unfortunately I don't have time to wait....I'm due my vaccination on 27th,then only have 36 days before my RTX infusion....which also attacks Bcells...so sounds to me as if one would cancel out the other?
My surgery wouldn't give me an earlier appointment as they said they were behind with their deliveries! They are only doing flu jabs on weekends.
Having found a drug after 20 years, that gives me a halfway normal life I am loathe to to have any sort of vaccine to put that at risk.
Sorry to keep repeating myself, but I am going round in circles trying to get any sort of professional advice.....& at the same time make up my mind what I should do.
As we are not medically trained at NRAS and everyone's situation with RA will be slightly different, in terms of things like doses, drugs and other health conditions/medications the person might be on, we would always tell you to ask your rheumatologist queries such as this. I know it can sometimes be hard to get a medical opinion, especially when a vaccine is very new.
From our point of view, some people had raised the issue with us that some news reports were saying this vaccine would 'boost' the person's immunity, and this was a concern, because of course that goes against what the medications do when you are on immunosuppresants. We therefore contacted our chief medical advisor, who has said that the vaccine boosts immunity to flu, stating: 'the new vaccine will not adversely affect their RA medication but only provide enhanced likelihood of immunity against influenza infection' and summarising with 'it boosts immunity to flu, rather than more generally boosting the immune system.'
He also suggested that patients may be recommended to stop this medication for a period before/after the vaccine, to maximise its chances of working well, so this is also something worth checking with your rheumatology team before you consider having the vaccine. As a general rule, rheumatologists do often recommend flu and pneumonia vaccines to people with RA, but always check what's right for you individually with your healthcare team.
I have a severely compromised immune system and I’m nagged every year to get a flu jab, however I have had very bad effects after every flu jab so for the last 6 years I’ve refused it. I have an egg allergy too and they won’t get the ‘egg free’ version at my GP’s. Although I’m not over 65 I consider the Russian roulette I’m supposedly playing is worth the risk. I won’t be having it this year either. What do you want to do because you don’t have to take the risk if you don’t want to !!!!
Can identify with this! when I queried whether or no to take flu jab I was told yes by Rheumy nurse but on the day was told it wdn't be effective anyway, only 8wks aftr 2nd infusion, but take it anyway!! waste of nhs ££s but at least feel no worse. BTW not in LosCris... he booked Pto de la cruz 4 a surprise .. rain 5/7... but warmer... take care x
It's the first time this 65+ vaccine is being used in UK. As you have found most people were not made aware of it. Even my local pharmacist couldn't give any advice as apparently NHS England have not issued guidelines to pharmacists.
Hi Simba I wasn't really concerned about that...I only wanted to know if having it would react in any adverse way with the drug I'm on.
One would think one's GP would know....but........
I knew I could have had the normal Infuenza Vaccine, as I'd had it before, but when I started reading about FLUAD & the PIL mentioned drugs for AI disease , I decided I'd better get going to find out where I stood in real terms.
If I had gone ahead with it, I would have been denied my infusion in December.
I might sound an old fuss pot, but having found a drug that suits me, & lets me lead a so called "normal" life, I wasn't willing to meekly submit to having the vaccine given by people who had no more knowledge about contra indications than I did.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
High potassium / flare up 
Methotrexate injections
I just don't know what to do
Rheumy appointment yesterday....
GPs know nothing about 4th vaccine. 
