3rd Covid Vaccine for immunosuppressed

Hi I am also confused about this, I am in Amgevita every two weeks, I know nothing about having a third vaccination before the booster, like you I am in the clinically extremely vulnerable group but No one has even mentioned having a third vaccine, the neither myself or my husband also in the CEV group knew there was a third one, we have both had the booster which was Pfizer or previous two were AZ. It will be interesting to find out what other people think.

So I have had the original 1st and 2nd Astra Zeneca and just had my 3rd which was Pfizer and was told I would need a 4th which would be Pfizer (this one would be classed as the booster). I'm in the UK and it was my dermatogy clinic that sent me the letter to get 3rd. Apparently it would be your specialist team that decide if you are immunocompromised/suppressed enough to get 3rd (not just extremely Clinically vunerable) and then the later booster, or if a booster alone would be sufficient at this time. Maybe worth following up on this with your specialist team. Hope this helps S

Thanks Sizzy, this interesting and I think shows how different health authorities are classifying people as severely clinical vulnerable and severely immunosuppressed group. I have been on Stelera since 2019, have no other conditions yet have never received any form of communication from my health authority. I had to seek both first and second vaccine and will be applying for the booster once I am eligible in November. So who is to inform me I need a third primary jab or booster if they didn't contact me for the first jab? A quick search I found this useful. https://www.cambridgeshireandpeterboroughccg.nhs.uk/news-and-events/latest-news/covid-19-national-vaccination-programme/frequently-asked-questions-regarding-the-third-primary-dose/

Hi Steview You might wanna skip to***** as I have gone on a bit 😀 The government actually admitted that people who receive their meds through hospital were not registered correctly at their GP's and were being 'missed' (there is a 'Coding' systems that feeds to the data the government uses to categorise high risk patients and it does not look at hospital records - massive flaw!! Who gets biologic meds from their GP?) I had to speak to my GP practice manager in great detail. And she openly admitted they do not read the hospital letters (they get them after every appointment I have so at least twice yearly) and they do not update the GPs records to categorise us correctly. Once they recatergorised me at my GP a few months ago, I have received so many emails and letters about being ECV it's ridiculous. At my last London Guys Hospital appointment with my dermatology consultant, we discussed how difficult it was to get the 1st and 2nd vaccines and he said that they (St John's Dermatology) knew this was an issue and were going to send letters to all their immunosuppressed/compromised patients to offer the '3rd dose". The letter said if you can't arrange through your GP, to call a special number to book. I obviously had to do that and drove to Guys Hospital. They were very specific that if on Sterlara you should have the 'Pfizer' vaccine (not AZ) 3 weeks 'before' your next Stelara shot when your immune system is at its strongest as your 12 weekly meds will have mainly worn off. ***** They also said it was really important that you get a 3rd vaccine and not the booster, as you will be eligible for the booster in about another 6 months. (Same vaccine but by getting the 3rd primary vaccine you get auto eligibility to the later booster). I would contact your specialist nursing team at your dermatology or rheumotoglist clinic to see what they are doing. It can't just be Guys and St Thomas's in London that are doing this surely. Sorry its so long, just wanted you to get as much info as I managed to find out. It took me over a year for my doctors surgery to recatorgarise me correctly. I've pretty much shielded anyway this last year and half. I think there is more data available on how Immunosuppressed/comp patients are faring with covid 19 infection and Boris was taking about the new antiviral meds being tested that they have purchased for such patients. Note - Booster vaccine is for 3.7 million extremely clinically vulnerable patients and those over 50. - 3rd primary dose is only for the 500,000 immunocompromised patients which includes those on most biologics or other immune dampening meds not just certain cancer treatments. So we fall into that very small bracket of 500,000 people in the UK that are ECV and immunocomprised. Gulp. Sorry for that depressing essay! I hope you get some answers Steview and are keeping well S x

Hi Sizzy, a very thoughtful and interesting reply thanks. I am well, I hope your treatment on Stelera is going well also. If you don't mind me asking, do you take anything else other than Stelera or do you have any other conditions that could mean you are classed as extremely vulnerable? A lot of food for thought there, I did have Pfizer jabs 1 and 2, probably by chance as that is what was being used at that time at the clinic I went to. Around April 2020, I contacted my health authority to see if I should be shielding or classed as vulnerable. At that time many comms were via voice mail, I eventually received a reply three months later saying I did not need to shield although as immunosuppressed just be careful with social distancing etc. So you can see I am a little sceptical and like you point out it seems that GPS's may not be taking on board hospital notes. Anyway I may contact my dermatologists office to enquire on a few issues including this. Thanks for your information it has been really helpful. Take care.

Hi Steview. I'm just 9n Sterlara and don't really have other conditions that would put me in that category (non alcoholic fatty liver, no meds, possible psoriatic arthritis, possible fibromyalgia). Your more likely to have NAFL if you have psoriatic disease. I found a JVCI advice NHS letter a couple of months back which categorised the 500,000 higher risk patients. It listed people being treated for specific cancers and went in to mention people using any medicines that binded certain Il.s including Il 12/Il 23 binder (stelara specifically binds those interlukins, see below). "Ustekinumab (Stelara) developed by Janssen-Cilag, Germany is a human monoclonal antibody that binds to the shared p40 protein subunit of the human interleukins 12 and 23, thereby preventing interaction with their cell surface IL-12-Rβ1 receptor." There must be a reason for that being included in such a letter. Originally Guys said I was CV and not ECV but that seems to have changed probably because more has been learnt over the last year or so. Having said all that my consultant seemed surprised 4/5 months ago when I said I was now classed as ECV! Go figure lol. My main consultant, Prof Smith and her team, created the PsoProtect me surveys last year so they must have gathered quite a bit of worldwide data. I, unfortunately, received the AZ 1st and 2nd vaccines. I think the success of that one was marginal on immunosuppressed!

Sizzy, thanks for your reply. Since I have contacted my derms office, who knew nothing about the third primary jab. They advised me to contact my GP. That discussion proved non conclusive also. Anyway I have a derm appt next month so am going to raise it in person. Thanks

Wow, that's so unhelpful and why on earth are the UK wide dermatologists not all on the same page. Sorry your getting no-where with your medical teams. My 3rd dose letter come straight from St John's Dermatology at Guys so it's them that instigated this, not direct from the government NHS which is what I read would happen. I hope you get some resolve on this S

Just read this on a BBC site, it's the same it seems for many people being reported by support groups etc. Covid: Delay of third jabs for most vulnerable criticised By Katharine da CostaHealth Correspondent 2 October 2021 The rollout of third doses of Covid vaccines for vulnerable people with weak immune systems has gone "badly wrong", say charities. Vaccine experts recommended on 1 September that immunosuppressed patients should be given the extra dose to give them fuller protection. But Kidney Care UK and Blood Cancer UK say many are still waiting. NHS England says eligible patients should be offered the third doses by the end of next week. Studies have shown that people who are immunosuppressed - around 500,000 people in the UK - are unlikely to mount a strong defence against Covid-19, even after two doses of vaccine. Covid jab response low for some immunosuppressed peopleThird Covid jab advised for most vulnerable 1% The Joint Committee on Vaccination and Immunisation advised that individuals such as those undergoing chemotherapy, HIV patients or people who have received an organ transplant, should get a third dose as soon as possible. On 2 September, NHS England sent out guidance to doctors saying this third dose should be given at least eight weeks after the second jab, and at a time when the patient is not receiving treatment that may make the vaccine less likely to work. GPs and hospital consultants were asked to identify eligible patients and begin contacting them by 13 September. But people have taken to social media to express their frustration at not being able to access a jab, despite the rollout of the separate booster programme for the over-50s and at-risk groups. Steve Harrison, from Lincolnshire, had a kidney transplant in December 2020 and is eligible for a third dose. He feels the most vulnerable have been forgotten. He said: "Arranging the third vaccine has been a nightmare. Neither my consultant nor my GP knew about it. "I have spent days speaking to doctors, consultants, the CCG (Clinical Commissioning Group) and I am still no closer to having my vaccine booked. "Shielding ending, restrictions lifting, the world getting back to normal and moving forwards, yet I feel like I am moving backwards." The charities Kidney Care UK and Blood Cancer UK have both expressed concern at the high number of calls and emails they have received about the issue over the last few weeks. Kidney Care UK has passed on the names of more than 80 GP practices to NHS England which it says were not currently assisting people with a third dose. Fiona Loud, its policy director, said: "This lack of clarity is causing a huge amount of stress, anxiety and frustration amongst thousands of kidney patients. "This group are returning to work and public places with no specific national advice or support. "They feel completely let down and many have told us this is the most worried and anxious they have felt throughout the entire pandemic." NHS England issued new guidance to hospital trusts on 30 September, with instructions that action be taken immediately to contact all those eligible for their third dose by 11 October. These will be recorded as a "booster" shot until the national system can be updated to recognise third "primary" doses. This will ensure immunosuppressed patients can then be contacted again in six months for their booster fourth dose. An NHS spokesperson said: "While a decision on when to get a third jab remains a decision between a patient and their clinician who know about their ongoing care and treatment, all hospitals have been asked to identify and offer a jab to those who are eligible, by the end of next week. "Where vaccines cannot be administered at the same site, patients and their GP will be written to shortly so they can arrange their jab at their local practice or vaccine centre."

Thanks again Sizzy, I will probably wait till my appt next month but if I get no definate answers I will end up booking in for the booster. Take care.

This is intriguing especially as I'm on the maximum dosage of Stelara (90mg every 8 weeks) and that it looks like the Health Boards in Scotland are in the same boat.

Just to add to this discussion - my local hospital told me that as I was on skilirence, I would count as vulnerable IF I had another factor to add in - in my case being over 75 - the hospital pharmacy sent me that letter, but my consultant said he thought they were over-reacting. However, I decided being vulnerable made the treatment worse than the disease, and I came off the meds altogether.. I'm not entirely sure whether I regret it, or am glad I did as I am alive and haven't had to shield, but obviously now have psoriasis back again after 20+ years of real skin.

Oh lizziep, I feel for you. I was due to start Sterlara 6 months after I stopped Humira due to disease flare in February 202o but deferred due to the rising covid risk. I lasted until July when my clinical nurse said I was now severe and needed to start some kind of treatment (they offered everything, my choice as they knew how nervous I was). I went with Stelara in the end as I know I don't do well on topical, PUVA or other meds for very long. I did shield and still do really, I'm quite happy doing that as I like the quiet but I know some struggle. I couldn't cope on the end with the severity of my skin and I could see it getting worse every day. Topical treatments start working, then I get the flare. I hope you can do what's right for you xx

Just an update to my earlier input on the thread. Thanks to Sizzy for the heads up. Anyway I went for my booster yesterday (NW England if it matters). Following earlier contact with GP and dermatologist to confirm which jab to apply for, third primary or booster. my dermatologist advised the booster. I turned up yesterday and as soon as I answered I was on an immunopresent med, they advised I was to have the third primary jab, no ifs or buts that was their stance. So third jab done, I will need a booster in 6 months.

That also happened to a friend of mine with MS. She was told by clinical team it was a booster but once there they said 3rd vacinne. There is so much confusion with clinical teams. X

Totally agree with you Sizzy, confusion with clinical team advice plus I think health authorities have interpreted the Government guidelines over shielding and booster differently..

I have recently had a letter from my Rheumatologist with quite detailed information about who should be having the third jab (rather than the booster). According to the letter the British Society of Rheumatology is recommending the third jab for patients taking the following drugs; - Any DMARD (except sulfasalazine and hydroxychloroquine), - Any biologic drug or JAK Inhibitor, - Prednisolone (at a dose of more than 10mg daily).

I've just re read all this discussion as I am trying to decide whether or not to go back on immune suppressants when I get the chance and get back to the dermatology department - although referred, back there is no sign of any appointment. COVID seems to be very much still 'a thing' and I am 77. So difficult to decide.

Just had covid jab no 4! I intend to restart my meds in a couple of weeks having missed the last one 12 weeks ago for various reasons. Skin getting bad again do feel I have no choice but to restart Sterlara. Goid luck guys x