Flu vaccine and disease progression

[vivdunstan]

Yesterday I had my first flu vaccine in nearly a decade. Woot! Much better than keeping getting flu, and now I'm finally allowed again by the rheumatologists, who banned me from it, after it coincided with a disease flare one year (just pure coincidence I suspect). My husband always gets done as my carer. He's not so keen Had lunch after at Visocchi's Italian restaurant, sharing a sausage pizza. On downside I'm really struggling with my limbs, which is a perennial problem now. Was moving ok till got dressed and ready to go out, then wham! Definitely a 2 stick day. Sadly I think it's progression from the disease, rather than my steroids being too low or things out of control. I have cerebral vasculitis, in a very MS-like form. When I did my Blue Badge application renewal a few months ago my answers were significantly worse than the same time 3 years earlier, so definite signs of deterioration. Need to use both my sticks more, as needed, and my wheelchair. But given I've been living with this for 23 years and am still here, which wasn't looking likely for a long time, then I've a lot to be happy about. Went back to bed after the brief afternoon outing and had a quiet night.

[PMRpro]

Good to hear from you viv - have you been very quiet or have I just missed your posts?

[vivdunstan Volunteer in reply to PMRpro]

Thanks! I've replied regularly to a lot of posts/queries by others. But I haven't started many posts of my own, though that's pretty usual for me.

[PMRpro in reply to vivdunstan]

I've been lurking here and looking at every new post to see if it is interesting to me but not following a lot. The PMRGCA forums have been manic and something has to give somewhere!!! Miss it though...

[Budapest]

Hi Vivdunstan

You mention a disease flare after a flu injection. I wonder if others have had such a reaction & if they put it down to coincidence? I ask this as, after after several years of having the injection with no ensuing problems, this year I became ill 2 days afterwards with coughing, sneezing & generally feeling weak, exhausted & unwell. My asthma was re-activated. I have GPA so quickly contacted my Vasculitis team & my steroid was increased from 5 to 20 mgs for 5 days, then reduced again by 5 mgs every 3 days. It took 2 weeks to feel anyway well again.

I will be very interested to know of others' experience with the flu injection.

Budapest

[vivdunstan Volunteer in reply to Budapest]

I think some other people have mentioned this before on the Vasculitis UK Facebook group. But it is rare. It can be difficult to tell if a flare is linked to the vaccine or probably just a coincidence. And medics have different views.

I don't think it's something that has been researched too much by medics. It probably should be. But I think it's generally regarded as a rare problem. And not all medics even think there is a link.

Hope you got over your relapse ok, and are doing better now. Have your medics commented on whether you should get the vaccine in future?

Personally I'm happy to put this down to a coincidence, as the consultant agreed this year. Having had flu 3 times in the last decade when I wasn't vaccinated, including swine flu, and twice ending up with bronchitis, I don't want it again! I consider in my case the risk of getting flu far higher than the vaccine chances.

[PMRpro in reply to Budapest]

I suspect the flu shot pokes an upset immune system and in some people it is simply too much and a disease flare results.

But the flu shot vaccine is "killed" so can't actually cause flu. A viral infection takes about 3 days to incubate - anything happening within 2 days of a shot was already hatching when the shot was given and is coincidence if it is flu-like.

[jackrussell in reply to Budapest]

I have had flu vaccinations twice , and both times I have been ill, spending 1week feeling as if I had flu,and then a week to recover.So it’s a no from me.

[PMRpro in reply to jackrussell]

Have you ever had real flu? I couldn't get out of bed for a week except to the toilet! I had another week in bed and then it took weeks to recover - and I didn't have PMR at the time. The one year he didn't get the flu shot because he had bronchitis at the time and then forgot, my husband got the flu, developed pneumonia and it took nearly 6 months of repeated x=rays and CTs before they gave him the all-clear.

[jackrussell in reply to PMRpro]

I know there are many people who always have the flu jab,and really works for them, I have had flu once,and as you say ,it can be very nasty,I don’t like the idea of having flu again,but as I’ve, said when I did have the flu jab I didn’t feel at all well, so I expect it’s “ you take your choice “ .

I am sorry that you were so ill with it,I know it is quite nasty, I have though thought about the pneumonia jab,have you any thoughts on that?

[PMRpro in reply to jackrussell]

What I meant to convey was that a couple of weeks feeling out of sorts is nothing compared to real flu! And when you do have something after the flu jab it is more often than not coincidence and the flu shot got the blame.

I haven't been offered the pneumonia jab - my husband has had it though. It also just reduces the risks of getting it - it doesn't cover all sorts though which was why he still got it.

[vivdunstan Volunteer in reply to PMRpro]

Yes, having had flu 3 times since being banned from the vaccine I had a really tough time and wished I could just get the vaccine!

Twice as well as dire flu I ended up with bronchitis after, which lasted months. And once it was swine flu I was battling.

My husband routinely feels mildly fluey after the annual vaccine, but considers it worth it. That is an often reported side effect among the general population. Fever, chills, muscle aches, that can last a week. But nothing as bad as a real bout of flu.

I was lucky only to get a little of that this time. Worst side effect for me was whopping arm pain. Needed 4 hourly co codamols for 5 days! But still ecstatic to get the vaccine again.

[Budapest]

Thank you , Vivdunstan & PMRpro for your helpful replies. I plan to have the injection again next year but will up my steroids more promptly if I start becoming ill. My GP said that some people have an adverse reaction to the jab but made no further comment & the specialist nurse at the hospital, who advised me to up the steroids, also made no comment about future flu jabs.

Thank you I am well on the mend, just still feel weak but nevertheless o.k.

Budapest