Finally got my follow up with rheumy nurse next week on Tuesday so will ask this week with everything else I need to ask.
But I’ve just had a text from my gp with a link to book my flu jab and autumn covid booster. I’ve not been told I am immunosuppressed, or that I’m more at risk and I’m only on hydroxychloroquine. I thought only those that were on like the biologics etc would be eligible.
Any ideas? Or have my docs just sent it because I’m under rheumatology? 🙈😂
Edit to add, I also had covid back towards the end of April. Do I still have antibodies for up to 6 months, so if eligible I should wait a couple of months?
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Bowtruckle
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I'm sure the flu and Covid jabs can wait until after your rheumatology nursing appointment next week, so if you prefer to discuss pros and cons first then hold off booking vac appointments till afterwards. That's what I would do, anyway 😊
The covid boosters are for anyone over 50, or age 15-49 with a health condition that puts them at risk. So everyone who was eligible due to varying health issues at the start comes under that category, not only the immunosuppressed. Anyone in table 3 which I’ve screenshot is eligible, and RA is listed here. So yes you are entitled to the booster. Advice for those who’ve had covid is still to get the booster, but to wait 4 weeks before getting it.
Hey MG! Do you know if the bivalent vaccines are in general use now? The media says from September, healthcare workers obv in front of the queue, then us and over 75s. Is that what you've heard?
There is 26 million eligible for the booster. The government have secured 13 million of the bivalent vaccines, but there is no plan at the moment as to who gets what. The government are advising that you accept what your centre is offering. I haven’t heard anything re restricting it to certain groups. So it looks like you have a 50:50 chance of getting a bivalent.
Thanks MG! That is as pretty clean cut-down-the-middle odds as they come isn't it!
One would have hoped that those with weakened immune would be selected above the over 50's otherwise healthy, but that would be too organised and logical for the GOV to think of implementing.
I understand the frustration, but it would probably be challenging to direct these vaccines to where they would be needed. I’m guessing it will be first come first served basis unfortunately. I will continue being cautious which vet one I get. I’m on 5 immunosuppressants with fused ribs. Thankfully just me and hubby here. Stay safe 🤗
They have a list of ppl who are immune suppressed already, It's in the GOV and NHS interest to prevent ppl with low immunity from filling up beds in the hospital due to complications caused by getting covid. Where has the covid task force gone or at least a Zar. The GOV are obv done with covid but it isn't done with us!
It's a very scattergun approach if it is first come first served. I feel for you MG, although you don't expect it you ought to be prioritised for sure. I have AS also but not s bad compared to what you have suffered. I for one am tired of being careful and selective about where to go and who to not see etc. It's no way to live. If I had the bivalent I feel it would help me feel less uneasy about living my best life. It's just me and my husband too, he would feel less worried if I was less at risk after nearly 3 years into this whole debacle. I am ranting I know, but many here will relate I reckon.
I completely relate to what you say, and would love for a system to be in place for the appropriate people to get it. We also know of many immunosuppressed on here who the system hasn’t recognised are immunosuppressed and struggled trying to access antivirals, so there system is currently far from perfect. I agree the government seem to be done with covid and moved on. I don’t say I agree with it just being given to the however happens to be attending that day, but sadly I don’t see this government prioritising anybody for it unfortunately. I’m also fed up, I haven’t been able to visit my elderly mother or sister who live in Scotland, because my respiratory and rheumatology specialists both advise avoiding train journeys. My route involves travelling via London as I live in Kent. I feel guilty as my mum is moving to a new flat and I feel I should be there helping, despite health wise not being capable of it really. My daughter lives in Leeds, I used to regularly take the train for a few days visit. Now I rely on hubby being off to share the drive to Leeds. I would love to have my freedom back. Sorry I’m ranting now , I’ll get off my soapbox 😂🤗
That's so true about ppl falling through the cracks with antivirals. I have had issues too getting my previous vaccines so I know you are right of course.
It's good we can vent here, we share an understanding of what it's like being in the margins so rant away. I'm in Kent too, another thing we have in common .
I’m in Deal, with a dreadful rheumatologist, who’s as useful as a chocolate teapot. He left my lung complications for my GP to investigate and refuses to look at any joints other than my spine unless the gp has looked first. Even when it’s bilateral with no injury and clearly rheumatoid in nature. Stuck with him due to needing to stay local for funding 🤗
Remind me not to move to Deal. I'm near Maidstone, thankfully my rheumy Dr is very thorough, I make a point to compliment him on that, credit where it's due and all. Is your GP any good? Mine is outstanding I have to say! When are you moving to Maidstone did you say!😉
Thankfully my GP is excellent, and it was thanks to her I was referred to a respiratory specialist. Even the respiratory consultant was shocked that my rheumatologist didn’t investigate my lung symptoms further, given it’s a known complication of inflammatory arthritis. My fingers developed painful nodules, which without looking said it was OA. I was an orthopaedic nurse for 34yrs and knew it wasn’t. Then I got tingling in my fingers, which he told me to get gp to refer me to the carpal tunnel clinic. I said I was concerned it was coming from my neck which he dismissed. Had nerve conduction tests which showed it’s not CTS but coming from the slipped disc at C6-7 which I’ve had for 11yrs and has been calcifying and now pressing on the thecal sac of the spinal cord. I’ve just had another MRI of my neck by the musculoskeletal clinic which my gp referred me to as rheumy isn’t interested. They are talking about referring me to Kings for assessment, as they haven’t dealt with calcified discs before. My rheumatologist acts like someone who is about to retire. He’s only in his early 40s though. I used to see an ESP physio who won an award from NASS for the AS clinic she set up. When she left he dismantled it. We used to get given iPads to complete our bath scores, then have measurements taken, then you seen her or the rheumatologist. Now no scores are taken, he invents scores to put on your summary to justify continuing biologics, and never takes measurements. I do my own scores and take them in, which initially he dismissed, till I pointed out without asking 1 question from the scoring tool he was scoring me, at least mine was accurate 😂 that shut him up. I complained about no measurements being taken so now travel once a year to a hospital 35 mile away every December to get my measurements done. That isn’t offered to all AS patients, only those who complain. I was a ward sister with the Trust for 20yr, and he’s honestly the laziest consultant I’ve ever met. Sorry on my soapbox again 😂🤗
Wow, he certainly sounds asleep on the job, non caring ppl ought not to work in health or social care in my opinion. There are plenty more jobs that don't need a good bedside manner. you have really been through it with your health, more than anyone I know. Do you think you got a very late diagnosis for AS, which has caused all these other health complications to be baked in? it takes years to get a dx then years to find the right fit meds wise i know that. For me, it took 20 years from when I first noticed back aches and started going to a chiropractor. I was 42 when dx and I'm soon to be 55. Luckily I didn't have a rapid progression of my disease in that 20 yr period.
The NASS adviser who diagnosed me said I had an aggressive form of AS, think that was partly due to the fact I still had significant inflammation despite already being on prednisolone and methotrexate. The MTX was started as a steroid sparing drug, to try and help me get my prednisolone dose down. I’d already been on steroids for 4yrs and dmards 3yrs. So it’s possible it was the uncontrolled inflammation prior to starting biologics. I’m hbla27 positive, I have an identical twin who luckily doesn’t have AS, but will be positive too. My heart is also enlarged from the inflammation. If they took me to the vets they’d put me down 🤪🤗
I have a love-hate relationship with them. I had them also around the time of my dx. I’m hbla27 positive also, but if I was offered the last bivalent in the UK, I'd throw it over to you as you really are in a pickle with your health. x
Oh I wouldn’t accept. I do ok, I am a very positive person and don’t let things get me down. There are always people worse off. I always get there, may just take me a little longer. I’m also fortunate to have a wonderful hubby, who has read up on both the AS and adrenal insufficiency. If I have a migraine, he will work from home as you can have an adrenal crisis due to the vomiting. Not sure if I mentioned my severe stroke was due to a crisis and how I was diagnosed with AI. I was lucky and was thrombolysed and recovered well physically, but have been left with dreadful memory issues. When I wake I feel like a phone that’s flashing critical due to flat battery, till my steroids kick in and provide me with cortisol. So hubby brings me a coffee and pastry to keep me going till I can get up. He’s a keeper 🤪👍🤗
I wear FFP2s on trains, and will wear a FFP3 when I fly to Paris (first time abroad since I don’t even remember). I am not as high risk as you, just CEV, and it is only this year that I have attempted any journeys. At least you can drive, but I understand how hard it is.
I do have FFP2 masks, but although I wear them for hospital appointments etc. I struggle. The lack of chest expansion gives me the sensation of suffocating, and triggers my asthma if worn too long. So wouldn’t tolerate it for the 9hrs from door to door. Years ago I would have driven the 550 miles but it’s too difficult now with the joints and fatigue.I am meeting my mum, sister and brother in law in just over 2 weeks for a 4 day break in Yorkshire, to celebrate my mums 80th. My daughter and her husband are joining us too, so looking forward to that. That should keep me going a while longer. 🤪👍🤗
I totally get what you’re saying but I think it’s a logistical thing. I spent several months volunteering in a vaccine clinic so have a bit of an insight as to how they work. If vaccine centres (especially the smaller ones) are using two different vaccines you will end up with more waste. The vaccine centres try very hard not to waste any doses but after they have been prepared they have a shelf life of only a few hours. Also for Phizer (I don’t know about Moderna as the clinic I was at didn’t use it) there are 6 doses in each vial so if you open one for one person at the end of day you either waste 5 or have to find 5 people to come at very short notice - this task becomes more difficult if your using two different vaccines with different criteria (I experienced this at clinics using Phizer & Astrazeneca). The other option would be to direct people to different clinics depending on vaccine type (the 119 online system did do this to some extent for AstraZeneca/Phizer vaccines) but it does mean some people end up having to travel further. They have shown that the original vaccine still works effectively to prevent serious illness which is what is needed to protect the NHS. And we also need to bear in mind that the anti-viral treatments have also proved to be very effective.
I had very nasty side effects after my first two Covid19 vaccinations & was not willing to accept a third jab with that vaccine.I went along when the time came, asked to speak to the clinician in charge, showed him the letter from my consultant explaining the side effects & advising me that I should ask for a different vaccine…….the clinician agreed & they did have a small supply of a different vaccine & he arranged for me to have it.
But that was over a year ago.
For my 4th vaccine/booster..…I searched around for local vaccination locations & phoned asking what they were offering, until I found what I needed. These clinics have access to our vaccine history & have a person qualified to understand a person’s need.
Yes it took a bit of effort, but as you say I’m one of millions & if that’s what it takes …if I want the 5th booster I will do the same again.
On reflection I have decided to wait until after the 12th as that is when the official rollout begins. I thought it unlikely they would have the bivalent one yet.. I will be just past 6 months, but I am CEV rather than severely compromised, so hopefully the decision won’t bite me 🙃…
I saw they now call former CEV patients “high risk” on the government Green Book/document online. I’m not going for my booster until early October as that will be 91 days since my third primary dose. (I’m very behind with my vaccines due to issues surrounding Rtx/vaccines not working last year, so I can’t go in September anyhow.) I will go to the nearby vaccine walk in centre where I’ve been for the last three vaccines, which is a very large main one so maybe they’ll have the new Moderna vaccine.
The Joint Committee on Vaccination and Immunisation (JCVI) has published its advice on which vaccines should be used in this year’s autumn booster programme.
For adults aged 18 years and above:
Moderna mRNA (Spikevax) bivalent Omicron BA.1/Original ‘wild-type’ vaccine
Moderna mRNA (Spikevax) Original ‘wild-type’ vaccine
Pfizer-BioNTech mRNA (Comirnaty) Original ‘wild-type’ vaccine
in exceptional circumstances, the Novavax Matrix-M adjuvanted wild-type vaccine (Nuvaxovid) may be used when no alternative clinically suitable UK-approved COVID-19 vaccine is available”
It's well worth getting a booster vaccination for Covid which will wake up your immune system again and ask it to make extra antibodies ready for the inevitable increase in infection in the Autumn. Having a booster vaccination (at least four weeks after) an infection has been shown to give you extra protection. And influenza is predicted to be a problem because of low rates while we were using isolation.
I read recently, that more people have died this summer than last from Covid. It’s best to be safe in my opinion. I am going to a walk-in tomorrow for my booster.
Thanks for all your replies. I probably should have added, I am only 32 and never been offered a flu jab before. I am also recently (not) diagnosed (told I have synovitis in hands and wrists but no official diagnosis) so have only been on medication for 3 months which is after I had covid, and did not shield or anything.
The one year I paid for a flu jab, was the only year that I had cold after cold after cold. So haven't had once since. With the covid jab - when I got covid back in April, I was quite poorly with it (ended up with sinusitis and antibiotics) despite being triple jabbed. I think if I knew it covered the new strains I'd be all there, but the fact it could be the same one that I have already had 3 times, I don't see how much more of a difference it would make.
Will defo bring up with the rheumy nurse on Tuesday and see what she says.
The vaccines don’t stop you getting the virus, but they should allow your immune system to recognise and act quicker against the virus, therefore reducing the symptoms theoretically. Hence why I’d jump at the chance if it was for a newer variant.
Hi everyone,
Thank you all for your responses to Bowtruckle's post. NRAS are in the process currently of updating our information on the COVID situation and autumn boosters.
This update will also included information about the bivalent vaccines which have become available but it is worth noting that although these are designed to target multiple strains of the virus, early research findings have not shown a significant increase in the protection they offer compared to monovalent vaccines in circulation. This is why they are being used alongside the original vaccines, and we encourage those offered any of the vaccines to take these up as they will help bolster your resilience to the virus over the autumn and winter.
Evidence has also demonstrated that these vaccines are also safe to be administered alongside the seasonal flu vaccine, and where operationally possible these will be co-administered.
It's also recommended that patients speak to their specialist team to work out the most effective timing for getting their vaccines around their medications. Your rheumatology team will also be able to give guidance on if and how to temporarily cease medications where appropriate.
I hope you find this information useful and wish you all the best.
Should you require any additional information or support please contact our helpline on 0800 298 7650 (Mon-Fri, 9.30am-4.30pm) or email us at helpline@nras.org.uk
Kind regards,
Hannah - NRAS Information and Support coordinator
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