Hi all, I'm based in Ireland and have received a notification for 4th jab. I've got GPA - on 2 X 500 Mycolat, 5mg pred and the rest. First 2 jabs were AZ and tolerated fairly ok, day in bed but nothing major. Third/booster was Pfizer and I had a severe reaction to this one. I'm interested to know the experience of those on similar and if Mycolat was suspended for a period prior and post the jab.
Regards
Mike
Hello, I've got EGPA and am on the same meds as you. I was told that I didn't need to pause Myco. This was because it's in the system for quite a while, and would need to be stopped for a long time before the jab, and this wasn't a good idea. I've had 4 Pfizer jabs and no problems, fortunately. They will probably won't give you Pfizer for your 4th jab.
I'm in Scotland and had my 4th Covid vaccine in December. I'm on 2g Myco Mof, 7mg steroids, and lots more. I have spoken to my consultant several times during the pandemic, and was not to stop any drugs around the vaccines. My first 2 vaccines were AZ and my 3rd and 4th Pfizer. I am expecting a 5th vaccine in June and probably a 6th vaccine in December *sigh*.
Sadly my cerebral vasculitis has flared incredibly badly after all 4 past Covid vaccines. This isn't a few days of a vaccine reaction afterwards, but dramatically increased neurological symptoms starting a week after each vaccine that then took up to 3 months each time to recover from. I am still badly affected after my 29th December 4th vaccine. I have discussed this with my consultant and GP, and we are all clear I must have my vaccines, and very sad I am reacting like this. My cerebral vasculitis isn't in remission or very stable though, and is very sensitive to vaccines. I was actually crying when I learned I would have a 4th vaccine. And yes I flared again, very badly, but at least I was expecting it, and could make plans. Very very difficult though with the combination of neurological symptoms I am facing.
It might be worth having a chat with your consultant re concerns. But I would expect they would want you to have the vaccine.
Best of luck.
P.S. I had an extremely low level of antibodies after vaccines 1&2. But #3, the Pfizer, left me with a very high and healthy amount. That was despite not pausing Myco Mof around the vaccines.
I don't really want to just keep getting these jabs ad infinitum. Our bodies have and are being bombarded with a lot of different meds over the history of our illness and I feel we're very vulnerable. I know we're vulnerable to covid as well but I'm hoping that Omicron may be the solution, hopefully. I'll make my mind up in the next couple of days after talking to GP and nephrologist.
Thanks Viv for your reply. I see 2 consultants - respiratory and nephrologist. Originally diagnosed in 2010 by respiratory guy as hit sinuses and lungs, induced for 18 days but I have made a good recovery overall. Initially, ENT diagnosed lung cancer but luckily the respiratory guy had a look at me. Both of these consultants (respiratory and nephrologist) have a special interest in vasculitis thankfully. I have a good GP as well so I feel lucky enough when I hear some of the stories here. Like you I hate getting any jab. In 2019 it flared in my kidneys which I think was as a result of a Prolia jab. Haven't had one since. I won't have it. I found a report online of a woman in Peru who suffered a kidney flare from a Prolia jab and sadly passed away. To be fair to my nephrologist he didn't bat it away, as is the usual response, but said he could see that being the cause. I told him recently about my reaction to Pfizer booster and he wasn't that averse to not getting another one. Will check with GP as to what I will receive this time but I've a feeling it's Pfizer. To be honest I don't have 100% confidence in the vaccines.Thanks again for your reply
Mike
Snap. Ver similar story - lung and diagnosed with lung cancer to begin with.
I had in lungs but sinus were hemorrhaging. Told me I had pneumonia and btw we just spotted on scan and x-ray that lung cancer as a separate issue
Hi Viv. SO glad you are based in Scotland as that lets us Scottish people know what to expect. You have answered my query in my head of ‘will we be getting any more jabs’. I’ve had my fourth and am extremely lucky not to have any adverse reaction to the jabs as it is my lungs.
Yes there are to be second boosters for the over 75s and also people who are immunosuppressed. These second boosters are to happen from 24 weeks after the previous booster. Which for me means mid June or so. Here is the Scottish government page confirming we Scots are getting this too. It is expected there will be another booster for this group after that, probably 6 months later. gov.scot/news/second-booste...
Hi my OH is on MMF , small dose of prednisone and 6 monthly RTX . He has has 2 vaccines of the Pfizer, 1 if AZ all with no I’ll effects but unfortunately no antibodies either! For his 4th he chose Moderna and had a reaction - not severe but in bed for 24 hours. Not sure if this was a good sign or not .
Thanks. I spent a day in bed after my 2nd jab (AZ) but the reaction from the Pfizer booster was severe to be honest. I suppose I've got decision to make. All the best
Rituximab is generally the biggest barrier for vasculitis patients re developing antibodies. Sympathies Main1234. However Mike is likely to have them after 3 vaccines on a lower cocktail, though they will be rapidly declining, and a 4th vaccine could extend them.
For me I'm overwhelming concerned about the risk of dying from Covid, which is why I keep getting the vaccine, despite quite devastating 3-month (or more) long flares after each one. I can cope with a flare. I can't cope with dying.
To be fair antivirals have shifted the equation a lot. Here in Scotland I got a letter saying I am eligible for these, and how to access them within the 5 days needed of a positive LFT or PCR test. Any later and they can't be used. Mike can you access these treatments in Ireland? Have you been given advice on how to access them quickly enough if you get Covid? That is really important, and a big potential game changer, but they have to be accessed fast.
Ultimately we have to weigh things up ourselves in consultation with medics. For me the balance is very much in favour of vaccines, despite appalling effects for me. And I will get my 5th and if necessary 6th ones later this year. I want to survive.
Thanks Viv. I'll have a chat with my GP on Monday re. the antivirals. I'd forgotten about them. Thanks again
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