Like many on here I take mycophenolate for limited systemic sclerosis (3gms/day in my case) so I am immunosuppressed. It was recently confirmed that those immunosuppressed would be given a third jab as part of their primary course due to failure to produce antibodies. The SRUK website confirms that most of us taking immunosuppressants would be offered a third jab imminently. This is NOT the booster, which will be given to a much larger group and is to boost declining antibodies 6 months after jab 2. . I incidentally took part in a study which involved taking 2 Covid antibody tests, admittedly just before my second jab, but they did indeed give a result of no detectable antibodies.
I have not been contacted about this yet- has anyone else.
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Hi - very interested to read what you said about the antibody study, I'm on 1500mgs of Mycophenolate daily plus methotrexate weekly and prednisolone daily and have just been told to stop taking Cyclosporin. These are for my condition of Pan Sclerotic Morphea and Faciitis. I had my third jab Sat 11th September - I thought it was the booster, but what you say makes sense, as the news reports state that the booster is just about to be rolled out. I did have some side effects from the jab on the Monday, I ached all over, had a head ache and felt very tired, having to take to my bed for most of the day. I felt ok the next day, so just a 24hr reaction.
No I haven’t been contacted either, don’t really know what to do. I can see some people on the myositis FB group were told to stop their mycophenolate before their second jab, but I wasn’t told to do anything.
Hi, I had appointment with my rheumatologist yesterday and she didn’t say anything about getting a 3rd jab but did say i would be getting my booster by end of month. I am also on 3g mycophenolate , prednisolone, Bosentan and sildenafil daily. I am due to get rituximab very soon but was told that would not start until 4 weeks after booster. I am confused now as to why consultant didn’t say anything about 3rd jab? I too continued as normal with mycophenolate before jabs.
Hi,I have not been contacted too. However, I do know that the process of identifying patients is in progress and planning being done for the third primary dose. We all will soon receive letters and call from GP regarding this. Please don't book for booster vaccination as people om immunosuppressants need third primary dose. And also all adult household contacts will get booster vaccination. We need to watch this space.
Had phone conversation with rheumy today. I also had the email inviting me to book at booster a couple of days ago (I am nearly 6 months since my 2nd jab). Rheumy says the third primary vaccine should be 'called up' via your GP - so if not heard, then get in touch with them. However, as a lot of people have immunosuppressants prescribed in secondary care it may not even appear on their GP record so filtering the data, many people may be missed off.
She said as I have had invitation to book booster I should take it and get one booked, but when I get on site, (My GP practice does not do Covid jabs) ask to see the doctor (there is one at every vaccination centre). They should note down that it is 3rd jab not booster to ensure that I then called up for booster in 6 months time, She could get me a jab booked at the hospital but they are reluctant to call immunosuppressed in to hospitals (ironic as my 1st and 2nd were both at hospital!)
In my case she has NOT recommended stopping my drugs - I specifically asked about it. She said if you get a flare from stopping medication, it is not likely to be immediate but several weeks later.
Just as a further add-on, I had my text inviting me to book booster, tried to do that this evening, but it would not let me do it online (I am only 5 months on, not 6). I rang 119 and they confirmed it is too early for booster and they are not sure why I had the text so early, but I should contact GP about 3rd jab as they cannot book that. So I have left a message via GP online service and I shall see what happens!
I asked this same question on Lupus U.K. as have a sort of MCTD/ Sjögren’s/ SSc overlap syndrome and take 3g Mycophenolate daily. I’m in Scotland and received my invitation for a 3rd vaccine in the post yesterday.
I have no idea of which one I’m to get but it’s clearly not just a booster. I was very relieved but wasn’t sure whether to stop Mycophenolate for a bit over this week of getting it - 3rd October. I was so surprised to get the letter tbh because the last shielding letter from Dr Gregor Smith and Jason Leitch seemed to imply we were not any different to non immunesuppressed people so I’d resigned myself to hiding from the world for the forseeable.
I phoned my rheumi’s Secretary to ask for advice having also had a depo jab in July. I was just told that the advice is to keep taking my medications - no asking my name or which medications at all?
Here is the link to the JCIV info and it suggests if we can then we should take while minimally immune suppressed to mount a better response so I’ve decided by my own initiative to stop after blood tests on Tuesday and restart a week ok Friday when I have had my latest Iloprost. Covid rate very high in Scotland just now so I want to give myself the greatest chance of vaccine efficacy possible.
I can’t see it will harm to stop taking MMF for ten days as it’s already in my system but not good to get Covid if inadequate antibody response. Im hoping it’s Pfizer or Moderna for me this time as had 2 AZ and like you, seem to have mounted little or no antibody response.
Hopefully you’ll get offered yours too very soon. Seems a bit of a postcode lottery when this will happen but it JCIV approved policy so you should get a 3rd vaccine I’m sure. I just wish the OCTAVE study had come out sooner so that our Rheumatologists would all give out the right advice.
Hi,I contacted the GP to discuss this issue. My GP has now booked me into a clinic where I will be given the third primary dose. As the secondary care gives us the MMF they will write to GP informing them the need to give us a third primary. I hope this helps. Just book an appointment with your GP and explain the situation.
I didn't hear the full news article but I did hear a headline this morning on Radio 4 from some of the medical charities saying the third jab roll out for immunosuppressed had gone 'badly wrong'.
I rang my GP and spoke to him direct about the third dose and he had no idea what I was referring to! Advised I ring the covid 119 number which I did but in the recorded menu there was no provision for what I needed information on. It is a complete nightmare 🥴.
119 cannot book third dose, unless you are more than 6 months after second jab. I have emailled my surgery the information and the template letter that they are supposed to send to me! Hopefully if they actually fill it in, I can then go to a drop in clinic and give them the letter for it to be noted as a third dose.
Well, I had to contact my GP practice several times before I got anywhere, even their ‘Covid team’ didn’t help. My persistence eventually got me a phone appointment with a medical student (under supervision) and half an hour later a GP letter emerged! I then took this to a drop in vaccination centre the next day and they even knew how to process me!
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I had a flu jab yesterday.Part of my scleroderma affects my lungs(idiopathic pulmanory fibrosis)auto immune system is not working. Hosp told
Please can someone help or advise me in what to do. As my condition is getting worse. An am scared of the worst...!!!
Trying to reduce ppi.
