I contracted vasculitis via covid. I'm 8mths... - Vasculitis UK

Vasculitis UK

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I contracted vasculitis via covid. I'm 8mths in with long covid. Has anyone else got this please. And which vaccine did you opt for if any

M3LZY profile image
15 Replies

Long covid vaccine

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M3LZY
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15 Replies
Chris-Bromsgrove profile image
Chris-Bromsgrove

I have not had Covid but just for information, a bad infection is often one of the triggers that starts vasculitis

May7 profile image
May7 in reply to Chris-Bromsgrove

Yes Chris, I do believe that that is what set mine off. As a healthy walk everywhere individual, I'd just recovered from the worst throat infection I'd ever had, when a couple of days later I was struggling to breathe while walking up the road. Later tests showed that my lungs had been damaged, and that my immune system had gone into overdrive. So many of the Long Covid symptoms described sound similar to Vasculitis symptoms.

Starray profile image
Starray

Hi. I’m sorry you’ve ended up with this. I already had Vasculitis, then had Covid and now have long Covid. I feel like I’m going in waves of a Vasculitis flare but I’m not so it must be the a Covid related aftermath. I had two jabs of Astra Zeneca and my third jab was Pfizer. I had the worst reaction with the third Pfizer jab which left me feeling like I had Covid again for two weeks but am OK now. I don’t know why this happened. Actually having Covid coincided with my first jab and I felt a little rough for a few days after my second jab but nothing too bad. I hope you start to recover.

M3LZY profile image
M3LZY in reply to Starray

Hi, I'm so sorry you have wretched long covid to. I don't know what to opt for as I've had heart issues via covid hence pfizer so not sure of this one. But also I suffered a pool of blood in my left arm. And the past 2mths issues with my left calf. Cramping, shin tingling also around my knee. But told I'm not at risk from clotting. So could be down to vasculitis. So unsure of Oxford jab. I also have blood in my stools since covid. GP is like just get jabbed. My lymphocytes were also under normal on my last blood test. It's such a worry knowing what to do.

Starray profile image
Starray in reply to M3LZY

Oh no, I’m so sorry to hear that. I have a history of clotting and was still told to go ahead with Astra Zeneca. Since having Covid and being jabbed it looks like my legs have tried to clot twice but I’ve been ok because already on blood thinners. I would double check who says you’re not at risk of clotting - I don’t think a GP could tell you that. Even some rheumatologists aren’t aware that this can be part of Vasculitis even if not common.

Paprika60 profile image
Paprika60 in reply to Starray

You say you are ok now. Do you feel more or less the same as before Covid and the vaccine flare? I have vasculitis over lapping Lupus and Sjogrens. I had two Pfizer doses in Feb this year and I had the worst flare possible and having all sorts of symptoms and was seriously ill for three months. It was as though I had covid except that I didn't end up in hospital. I have not gained my regular strength back yet. I have fatigue issue to begin with but at least I managed a decent walk for 45 minutes before. Now barely 30 minutes with poor balance. I have to go for the booster and am so scared of being so ill and losing more strength on top. The problem is doctors don't seem to have any solution for vaccine related illness. Mine doesn't. He just listens to my report and says nothing.

Starray profile image
Starray in reply to Paprika60

Hi, I’m sorry you’ve been so ill. I already had GPA and had been responding well to Rituximab but in February I actually got Covid but it coincided with my jabs. Sometimes, I think I’m getting better but for example this last week I’ve got up and had to go back to bed for a few hours every day. I feel as though go in cycles of flares but my bloods suggest it’s not my Vasculitis flaring so much be post Covid symptoms. I don’t really know but I feel as though I’ve lost a lot of the progress I made recovering from my pulmonary embolisms two years ago. I hope you get some help. Xx

Starray profile image
Starray in reply to Paprika60

My first two vaccines were Astra Zeneca and the third was Pfizer.

M3LZY profile image
M3LZY in reply to Starray

I have LC 10mths now from when I had covid. Soles of my feet indicate vascular issues, vasculitis through covid. I'm scared vaccine will make it worse. I feel in mess with it all. And GPs can't confirm that it will o.k. I'm feeling lost and confused.

amwright profile image
amwright

Hi, hope you are feeling well.. I am wondering if I am in the same position myself. Contracted covid in March 20, ever since then I've had over 15 chest infections, breathlessness erc, plus exacerbations of fibro. My consultant is convinced its asthma, I'm not so sure.. Thank you for putting this post upx

M3LZY profile image
M3LZY in reply to amwright

No worries LC is relentless....when I said I don't feel well enough for vaccine. I was told you'll never feel well enough for it. If this case. Doesn't fill you with any confidence on your recovery though... x.

Starray profile image
Starray

Hi, I spoke to my rheumatologist about having the fourth vaccine and she is reviewing whether or not I should have it as the third one made me quite ill and I’ve also got long Covid. Would you mind telling me what the matter with your soles is - mine have also gone weird but I hadn’t related it to the LC.

Chrisellie profile image
Chrisellie

Covid toes and feet rash. My daughter- in- law had these both times she had covid. Google it and you will get results.

winfong profile image
winfong

What kind of vasculitis do you have?

Chrisellie profile image
Chrisellie

Meant to say she doesn’t have vasculitis .