Vaccines

[Paellasangria]

Iv e said I’m not having any more vaccines whenever I had a covid vaccine or booster I have had severe flare ups body just seemed to go into overdrive ulcers skin blood vessels bursting terrible flu like same happens with flu vaccine so I’ve made the decision I’m not having them I know everyone is different this is just my experience

[MrsR_75]

Me also. I was so excited to get my first Covid vaccine and I’ve had all the boosters since, despite having a fairly severe reaction to each of them. I thought on balance it was the best thing for me to do.

I started to question this over the last three boosters- my skin reactions were very severe across my chest and shoulders and the flu like symptoms were quite debilitating for a short while.

I was at Aintree a couple of months ago and spoke to Prof Moots about whether I should keep going with the boosters. He said it’s a personal decision. Some Behcet’s patients are quite badly affected by the boosters and the flares which follow. Each patient will have to make that decision for themselves and that the risk is different now after several years of the virus in the community.

[HoundLover64 in reply to MrsR_75]

I too had a bad reaction after Moderna Spikevax and was more ill than when I actually had covid in 2023. I had very bad flu symptoms, heart palpitations, auditory hallucinations (loud bangs and pops), flashing lights, psychiatric symptoms (mildly depressed and fatigued) and eventually have been deaf enough I need subtitles in the TV. Deafness is because I experienced loud tinnitus (whooshing and hissing in my head).

I'm not sure now if it's just Behçet's that causes the reaction though. My husband has also been unwell and he had Moderna Spikevax on Nov 4th like me. His back pain due to nerve impingement on L vertebrae has been horrendously exacerbated.

I had a word with someone I know who is a surgeon and physician and they said that in their experience, anecdotally, it seems like whatever symptoms their patients normally have are temporarily exacerbated by a vaccine. One of their patients had a Menieres condition that got very much worse. Other patients with rheumatoid arthritis got terrible joint pain. I confided to them that my experience has put me off a vaccine next year. They said if you've reacted to the modified 'inactive' dose of covid19 in a vaccine, imagine how very much worse it'd be if I caught the real thing, a live and active coronavirus variant . They still felt me having a vaccine was worth it.

It's almost 4 weeks since I had a vaccine, I'm still a bit deaf with hissing in my ears but I don't feel as unwell as I did. I started feeling more well than I have been for years after taking B12, D3, Magnesium and I read up and apparently people experience more side effects if they're deficient in Magnesium, Vits D3, B12. My blood tests show I'm definitely deficient in vitaman D, chronically over past 5 yrs, so I started taking those vitamin hs and I felt a massive change after 2 weeks in. My Dr friend said yes, Magnesium can make you feel very well especially if you go from being chronically deficient to non deficient.

So on reflection, I will probably accept the offer from NHS to repeat a vaccine even with side effects. But I will ensure my blood is very stocked up in my vitamins. I have had chronically very low Vit D in bloods. I bet that didn't help.

[Essentials]

Yes true, but let's face it, without vaccine I caught Corona which also caused a big flare up, so... with a vaccine we can at least choose the timing of the flare 😅

[red_wine]

I think you need to weigh up the benefits vs risks to you. I have always felt that it is personal decision and make an informed decision on a case by case basis.

I had a blot clot in my brain caused by behcets. I know that I am susceptible to a recurrence and hence have always avoided the covid vaccines. My GP still refused to issue an exemption certificate during covid - didn't understand and didn’t want to listen.

I don’t take the flu vaccine either. Personally I don’t think it’s worth overstimulating my immune system unnecessarily now that my Behcets is finally under control.