I had my 6 monthly phone call with Rheumatologist cancelled this week. I was hoping to ask if it was ok to have the vaccine if offered. I am on Rituximab so immunosuppressed. Has anyone else gained an answer to this question pls?
Pfizer vaccine: I had my 6 monthly phone call with... - NRAS
Pfizer vaccine
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Evie3
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Hi I had a routine call from my Rheumy nurse and I asked her about the vaccine. She said they have been informed on Tuesday the vaccine is safe if on immunosuppressants. I am on methotrexate and Cimzia.
I haven’t Evie and wish I had as I’m wanting the same info too as I am also on Rituximab. I am not sure my rheumy will even get in touch with me tbh. I don't think my January rheumy appointment will go ahead either. I’m sorry you had your appointment cancelled. Frustrating. I want to know if we are to wait for the Oxford one or any other in the pipeline more suitable. I do want to have a vaccine though.
I also want to know when is best to get the vaccine as we don’t know for sure exactly when B cells are being repopulated without a blood test to check the levels. I’ve been told by my nurse they usually start to grow back around 6 months but would that be enough of them to prompt an immune response to those of us on Rtx? What if we take much longer to repopulate. I know that some immunity from the vaccine is better than none, but we want to do it to the best we can really if possible. That’s what I would like to know. Hopefully someone else on here on Rtx might have a rheumy appointment soon and maybe can answer us from the info they are told. I know NRAS are hoping to post something when they hear.
Was just going to say I posted a link yesterday to Professor Van Tam’s interview and the first question answered quite a few things but not soecifically to RA or Rtx, but HH has given you the link. 😀
Yes me too on Rituximab and would like to know some answers, I only see my specialist once a year and to get hold of a Rhuemy nurse , well , you can’t , a bit like gold dust 🤬🤬😢😢 I bet my GP will write to me before my Rhuemy team
Hi Jillyanne, I don’t expect to hear from either my doc or rheumy. I’ve been ignored and let slip through the net and treated rather shoddily earlier in the year. I’ll be chasing things up with my GP and will let you know if I hear anything. It’s awful at times .. you have a high risk med and you don’t often get enough advice. Even before the pandemic it was poor from rheumatology. The biologics nurse and my rheumy are excellent but everything surrounding them is not. My own GP and the practice manger are brilliant and a very efficient practice nurse too but so many other people leave a fingerprint and mess things up. As soon as I hear anything I’ll let you know. Hope you hear soon too. x
I find it really sad that different health areas have different ways of treating there patients , I see my Rhuemy once a year 🙄🙄 and haven’t seen a nurse for about 2 years , yet some people see there team or speak to there team every 3 months or 6 months . I would have thought every health authorities follow the same sheet but obviously not
I usually see the Consultant once a year and the specialist nurse in between. However Covid has messed that up and you are lucky if they return your call if u leave a message. You really dont get a good service do you?☹️
I think it’s quite appalling, I have emailed a Rhuemy nurse twice and sod all 😢😢😢They just expect you to manage all by yourself . My Dad had RA and died 24 years ago and his treatment by the NHS was just awful and really not a lot has changed in all those years , apart from the treatments that they offer now
Hi, I had a phone appointment with a rheumatology consultant this week, I asked that question & was told that it is ok for us to have it. She said that all the latest guidance can be found on the versus arthritis website.
Do you have Rituximab infusions, Pea?
Cimzia injections, biologic anti tnf
I am not sure if you have your Cimzia injection every 2 or 4 weeks but my infusions are every 6-12 months and they deplete your B cells which is the concern of people on Rtx that they may not replenish the B cells to mount an immune response for the Pfizer Covid vaccine to work well. Timing will be very important. I think that if your rheumy has said that to you then you won’t have a problem.
I had my 3 monthly phone call Wednesday from my RA consultant. He told me to have the injection. To continue with my meds (methotrexate and sulfasalazine). He said it’s safe. But that’s me we are all different
I feel it’s not going to be as straight forward re the vaccine if you’re on something such as Rituximab infusions.
Just been on Versus Arthritis and looks like the Pfizer vacc may not work as well on an immunosuppressed person due to the meds we are on. So will the Oxford one? Is it worth having then if still have to shield🤷♀️🤷♀️. We definitely need answers.
We need to know especially if we are on an RA meds like Rituximab which depletes B cells. Professor Van Tam said in the interview link I posted earlier this week that the vaccine may not have as much efficacy on the immuno suppressed.
A friend of mine who's on imraldi and mtx, she's under the same consultant as me emailed our rheumatology department just over a week ago asking about the vaccine and was it safe. The reply was on the lines that they didn't know what the vaccine contained and they couldn't advise at this point if it's safe. Said to wait until they had more information and will advise then. Another friend at the same hospital was told a few days ago that her consultant is leaning towards the Oxford one.
I was thinking they have a leaning towards the Oxford too and why we’ve not heard anything .. the rheumys want more info too. xx. (Did you get my email Paula? I have had has such a lot of trouble with PMs here and emails too. 😑🤨)
I've just checked my inbox back to the beginning of November and I haven't received an email from you. xx
Sorry Paula, and I’m not surprised! My email has been erratic. I’m not receiving some either as well as not able to send. All settings seem normal though! Odd. I’ll catch up with you over the next couple of weeks Paula and I hope you are alright .. as well as anyone can be at the moment. xx
I really well thank you, still in remission thankfully, hope your okay too. xx
Rituximab working as it usually does but likely to be throwing a spanner re the covid vaccines ... Glad you are steady. xx
Sorry I can't help, but looking at the list of people who will receive the vaccine before me, I don't expect to be offered this side of Easter and maybe even June or July.Although, like you I am on a biological, this category of patient is not high on the priority list n Scotland. I am fine with this as I believe HNS, Care workers, the elderly, etc. are all very deserving and it's certainly in our interest to keep our health workers safe and well.
The other benefit of waiting, of course, is that there will be more information about the vaccines and I would expect more informed decisions about which one is best suited to each individual.
You are so right in what you say. However I am 68 and feel I need to enjoy what life I have left and see my grandchildren, so happy to have the vaccine when it is offered.Just had a call rebooking my telephone call with my Rheumatologist and it is Tuesday!! So hope to get answers which i will post for u all.
Good news you are rebooked Evie and hope you can get some answers and do let us know how it went!
Will do
Gosh yes Evie you have to grab every opportunity available and hopefully you won't have to wait until Easter or beyond for a vaccine. Pleased you have another appointment too. It doesn't help our anxieties when we have to wait so long between appointments. Hope you get reassurance.
My rheum nurse said it would be ok as it's not live I'm on mtx and Cimzia. However she said that to hey don't have much information at the moment and that if I'm offered a vaccine I shouldn't have it without checking with them first. Not that I expect to be any time soon.
I was kind of hoping the rheumy team would have more input and communication with us but feel it’s not going to work like that, I don’t think! A lot of us could slip though the net unless we are proactive. That’s me all the way. They have a special net with huge holes in for me ... always!! 😑
Its been the same with me... earlier in the year I even resorted to seeing my Consultant privately. They cant do enough for u then. But now ☹️
So very frustrating. I understand entirely, x
Can I just ask , if you pay privately, do you see the same consultant that you see with the NHS.
Thank you
I was at my local hospital this afternoon and hoped to have the vaccine - but no, the hospital is not handling them. What I have found out only in the last couple of days is that I can have the vaccine (when available) although I take methotrexate and remsima (infliximab), so I should imagine Rituximab is much the same kind of biologic as remsima, and there is no need to stop the medication either.
Hope this is some help.
bienassis
Thanks for that.I was expecting a call from Rheumatologist at 3.45 today. Waited by the phone until 4.30 as assumed not happening. Went out of the room and it rang..by the time I got to it, he had rung off. As its a private number u cant ring back ☹️. I have left a message on the RA nurses ansaphone but thats a waste of time.
A similar thing happened to me! Except it wasn't the rheumatologist but the haematologist. I was expecting to call at 12.30pm. But no call, so I sat by the phone until 4.00pm, and still nothing. Finally, I phoned the department. The secretary made a few enquiries and said the doctor had phoned me but there was no answer. A few days later a copy of a letter sent to my GP arrived with the rather terse comment that I hadn't answered the phone. It didn't seem to occur to the doctor that she had inadvertently dialed the wrong number.
I was annoyed enough to write back and point this out, but I heard no more until I received another letter some weeks later saying she would no longer monitor me and was "handing me back" to the GP.
I'm sorry to say that telephone appointments are really not satisfactory. I have heard that some patients and doctors prefer them - but not this patient! Apart from my experience, there are worse problems involved when it comes to describing something that really needs a doctor's examination. so I do hope these telephone consultations are not going to become the norm.
beinassis x
Oh thats dreadful. I am sure this is happening to a lot of people. I dont think I will hear anything more.....the helpline is not working as one.....I might just as well speak to my hand! 😡😡
in reply to bienassis
I've had this with a GP who claimed she had rung twice (!) one morning when I was waiting by the phone. I rang the receptionists, but guess who they believe - those who pay their wages.
bienassis in reply to
This really is a difficult one - no doubt the doctor rang someone, but as with me they don't want to think they may have misdialed. But it's an impossible situation - as doctors feel under pressure from all sides. But everyone is under pressure, not just GPs, they shouldn't be on the defensive so much - they can apologise after all. But most feel incapable of doing any such thing although, of course, there are exceptions.
Still, it all adds to the general frustrations we feel just now. I hope, Bacharia, you did eventually manage to talk to your GP.
bienassis xx
Me again!! About the vaccine. I got the information about being able to have the vaccine with methotrexate and remsima when I phoned the rheumatology helpline to order my next lot of meth. injections. There was the usual long message, but it also said "the vaccine can be taken with all the medications without stopping any of them" .
So according to that, nobody will be left out.
If any of you out there hear the opposite, I would really like to know - for obvious reasons!!
bienassis x
Yes if what I was told really is the case, you should certainly hear it. I hadn't read your post about the Pfizer vaccine. I shall take that up with the rheumatology team. As for the Oxford vaccine, I haven't heard a lot about it except it is cheaper and and easier to store. And also it has been developed in a similar way to other covid vaccines (eg the annual flu vaccine.) The Pfizer is different - a new process entirely.
Any news on this would be very welcome. Meanwhile, we all wait for action - probably until the New Year.
bienassis x
Just to add a note to the above about Pfizer - I've read in the last few minutes that it probably won't work so well on the immuno-compromised; nevertheless, it is better than no vaccine. Anyway, since it will be some time before we get it, we may have a choice by then - and the Oxford/Astrozeneca may be better for us.
Let's hope so!
bienassis x
Well, Evie, I've committed myself to take the Pfizer vaccine after getting the invitation on Friday - I had been dithering as you know, but when the offer came my husband and daughter finally persuaded me, and I have just read a post from a NHS worker which lifted my spirits. I go tomorrow for the first dose and 11th January for the second.
The rheumatology department also stated that there was no need to interrupt my medications.
I'll post later about my experience; but I'm expecting everything to be fine.
bienassis
Thats brilliant! I dont know if you saw my post after getting a call back from RA nurse. She said the Pfizer one is ok for immunosuppressed and have it when offered. I dont expect to hear this side of Christmas.Await to hear how u get on. One step closer to having a near normal life
Hello Evie. All went very well. Pleasantly surprised about the calm and efficient way it was carried out. No adverse effects so far - but I don't expect any really, although they could be delayed for a day or so. Next appointment 11th January.
I didn't see your post, but I'm so glad you are now on the way to getting the vaccine. Of course, there's now a variant of the virus on the rampage, but that shouldn't stop anyone having the vaccine. We'll have some protection from that too.
We are now hunkering down until after Christmas - just the two of us plus Bertie the cat.
Do have as good a Christmas as possible and I hope you get the "call" soon afterwards.
bienassis x
Brilliant news. I dont know anyone else who has had it. Hopefully you dont get any side effects.Happy Christmas to you too and a better 2021 for us all 🤞
Take care x
I wonder if age has anything to do with the speed of my vaccine. I'm 85 and, with the biologic medication, that probably puts me somewhere at the top of the list. But I'm not sure about that; it may just be luck.
It was arranged by the GP but not given in his surgery. The venue was a large medical centre - not a hospital.
I'm free, so far, of any side effects - apart from the initial tiredness.
I do hope you get it soon. Good Luck.
bienassis x
You ticked two boxes then. Pleased no side effects. Hope u get the second jab...my husband read that they might use the 2nd vax for another person??I am 68 and immunosuppressed. Not expecting to be called for sometime. My mother in law is 95 and in our area.....she hasnt even been called yet.
Stay safe x
Yes, Evie, I heard that idea, too - that the second dose should be donated to others - I think the idea was put forward by Tony Blair.
It really is a stupid idea because the efficacy of the Pfizer vaccine depends on both doses. I don't think it will be too long before the Oxford vaccine is wheeled out, and that is easier to distribute and use. No special premises with deep freezers, just the normal refrigeration. Once that's on the road, things should move much faster. Whether that vaccine needs two doses, I don't know.
Since you are also immunosuppressed you should be quite near the top of the list - I would have thought taking an immunosuppressant would push you up the priority list more than your age. My daughter, who is 60, is way down the list; she's not expecting it any day soon. She lives in London. We live in Kent.
I am surprised your mother -in-law hasn't been vaccinated as yet. Is she in a care home? As far as I remember, the first person in the UK to have the jab was a 90 year old woman.
Hope your Christmas has been reasonable - we found it relaxing and calm; which was something.
Happy New Year! Let's hope we ( that is, the immunsuppressed) will all feel safer sooner than later.
bienassis xx
Oh it would have been Tony Blair! 🤬Hubbie’s mother lives on her own. I suspect its how easily the surgeries in that area can roll it out?
Our neighbour who is 65 and has arthritis had a phone call to say he will b called soon, but not same surgery as us. He isnt on any special meds🤷♀️.
Yes Christmas came and went..lol. At least we didnt eat or drink too much as we werent in company.😄
So after you have had 2nd dose, and after the period necessary for its efficacy....are you going to be brave and do more things, albeit with mask and hand sanitizer?
Stay safe xx
Yes, it does depend on individual surgeries, and the number of patients. We live in a large village with one surgery, 4 doctors. The surgeries have to know how many of their patients actually want the vaccine to start with. We were phoned late on Friday afternoon to say we could go the following Monday - so not a lot of notice. The centre has to prepare the vaccines in advance of the arrival of patients, so they need to know the number. If less people turn up than they expect they can't keep the vaccines hanging about; they have to try to find other people to use up that batch. The surgery staff went to the centre the next day, but there was a shortage of vaccines - two short, to be precise - and the two youngest had to do without. That is, until another batch is available.
As I understand it, the Oxford vaccine doesn't have to be kept at such low temperatures, and behaves much like the flu vaccine - available on demand. So much easier and less fuss. Much more convenient for big cities with large populations - the patients should be able to go to the nearest pharmacy - even if they need to book to avoid long queues.
I shall continue to be cautious for a while - social distancing, mask wearing, etc. The big question for immunosuppressed patients is how much protection we get. With this vaccine, for most people, it is 95% - but we don't come into the category "most people". Nobody, as far as I know, can answer that question at the moment. So, that's a good reason for being a bit wary!
Wonderful old lady, your mother-in-law! Living on her own like that. But she shouldn't have to wait long - I certainly hope not, anyway.
I'll keep my fingers crossed for you - and a vaccine in the near future.
bienassis xx
Once vaccinated we are never going to know if we r well protected are we. Think I will b wary for a long time. Hopefully if we did get it, we could recover from it 🤔🤞.
I have a friend who is a Doctor’s receptionist and she is now tasked with taking patients’ temperatures etc before they have the vaccine. She is all PPE’d up, thank goodness.
We said holidays abroad will be a long way off, but we will explore our own country when we r able. Apart from Trump, nobody seems to have taken the Chinese to task over starting this virus and leaving a lot of families without their loved ones. 🤷♀️🤷♀️.
Xx
in reply to Evie3
Tony Blair is not an immunologist or anything similar. Let's listen to the scientists who have done such amazing work work for us. When I've had my 2nd shot (nothing at all booked yet) it won't be too bad to continue wearing a mask in crowded places and washing my hands, but I'll sure as hell feel able to do more things, such as going on longer train journeys when we're allowed, without being overly fearful. Roll on the day!
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