Vaccine: Hi everyone, I just joined and would... - LUPUS UK

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Vaccine

Zainy10 profile image
17 Replies

Hi everyone, I just joined and would really like to share views on the CoVid vaccine, Pfizer. I am currently unvaccinated due to the fact, I was worried how the vaccines might effect my LUPUS (SLE). Although my rheumatologist has advised I should have the vaccine, I was still unsure. Have you had the vaccine and has it effected your lupus or your general health? Have there been any major changes in your health? Would love to hear your views.

Thank you

Z

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Zainy10
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17 Replies
Prunes profile image
Prunes

I've had three primary doses AZx2 and Pfizer, with a booster due in January. I have had SLE for 30 years. I have experienced no problems due to the vaccine other than sore arm and fatigue.

I can't advise you one way or the other, just giving you my personal experience.

Zainy10 profile image
Zainy10 in reply to Prunes

Thank you for your advice😀

milkwoman profile image
milkwoman

I’ve had three shots of Pfizer - no issues. I have lupus and Sjogrens.

Here are some tips to minimize side effects:

1. Get an appt late in the day. That way if you get fatigued or experience soreness or headache, it’s right before bedtime.

2. Be very hydrated prior to and after. An electrolyte drink is best. I bought a 32 oz bottle of Pedialyte Pro-Advance. Drank half prior to shot.

3. Make sure your arm (non dominant) is relaxed, hanging limp by your side. The person giving the shot should not inject too high on the arm.

4. Massage the injection site to work vaccine into your muscle. Do this every hour.

5. Take (2) acetaminophen after the shot.

6. Drink the rest of the electrolyte drink.

7. Get some rest.

Both my husband and I experienced very little side effects from the shots. Yes, a bit fatigued, minor headache and some arm soreness but nothing major and it was very short-lived. On our third shot, we had very little effects. No lasting issues or effects re: my lupus.

Hamptons profile image
Hamptons

I had AZ x2 and a Pfizer, AZ brought on my long covid systems but nothing lupus related. Pfizer was amazing, nothing, not even a sore injection point.

Kevin53 profile image
Kevin53

There is plenty of information on the Lupus UK website. Sounds like excellent advice from your rheumatologist. Best wishes Kevin

Sarah74 profile image
Sarah74

Hello. This is my experience and I have the Pfizer. First one 11.2.21. Felt terrible after as it knocked my immune system I then came down with a really bad UTI which needed at least 2 courses of strong antibiotics. 5 weeks sick from work. Was apprehensive to have the second. Took me all summer to build my strength back up. But I did abs the day I went for my second 18.11.21 I felt as strong and well as I can. Started with a headache that eve that lasted 2 weeks. Flu symptoms and then ended up with a chest infection. Blood results showed it had knocked my platelets my kidney function and my vit D down. 4 further weeks off work.

But I haven’t flared. Everyone is different however expecting me to have a third dose and a booster well isn’t going to happen. I wonder what trauma this is causing to my body having an infection every time. I’ve been careful about where I go and who I mix with all my life and will continue to do so

x

WinterSwimmer profile image
WinterSwimmer

I think you will find most people here have been vaccinated two or three times. Some have had reactions and some have not, but we would all rather be vaccinated because it is good for others as well as for us personally.

Some people here of course have very strong feelings against vaccination, but my personal recommendation would be to listen to your doctor before taking the advice of random strangers on the Internet. Millions of people worldwide have now been vaccinated and if a doctor advises it, why would you not go for it?

cathie profile image
cathie

No question have the vaccine and while you wait for the three doses to take effect please take every conceivable precaution.

Mollymaid profile image
Mollymaid

I have had two ‘Astro turfs’ booster of Pfizer and flu jabs … nothing to report felt absolutely fine. I have Lupus and osteoarthritis and recently diagnosed celiac. I am sure you will be fine upon taking the advice of your consultant.

Good luck whatever you decide to do.

Sending bright blessings 🤗

HazelW profile image
HazelW

I had 2 Astra-Zeneca jabs & a Pfizer booster and, apart from feeling a little bit rough for a couple of days after the first jab have had no after effects at all. All good !

Jumper99 profile image
Jumper99

I have had 2 AZ jabs and on Saturday had my 3rd jab, Pfizer this time.The first two gave me an apparent flare of my autoimmune diseases (lupus aps Sjogrens) which gave me more joint & muscle pains, fatigue and more cognitive problems than normal. That lasted months.

The Pfizer ones has made me ache all over, so far.

BUT catching Covid would be so much worse! Especially if you are unvaccinated. I think your rheumy is totally correct and you should get vaccinated as soon as possible. I live alone and don’t go out much as I’m disabled by arthritis in my spine and hips but there is always some contact with others, when they bring my meds or food and when my carers come for example. Omicron variant is very infectious. Getting vaccinated seemed the only way forward to me.

Oshgosh profile image
Oshgosh

Hi I’ve got lupus RA Sjogrens disease . I also have lung disease and fibrosis of the lungs. I .was very worried , like you about the vaccine. My consultants both advised me to have the vaccine. I’ve had 3 vaccines , the first 2 were Astra Zeno a. The first , my joints ached for a day, then all was well . The 3rd vaccine was Pfizer, I was fine after.It’s really hard with so much information/ misinformation about. We don’t really watch much to news. Just pick and choose on line. Take care.

Mlml40 profile image
Mlml40

So I had no major issues with my 3x pfizer vaccines but was hospitalised with Covid. Yes the first dose reminded me of the early days of my covid, pains in legs, headache etc but when I compare the two there is no comparison. Covid also triggered a massive flare, clots and severe neutropenia. My chest still hurts from the pneumonia and the following costochondritis. I would be much more worried of being unvaccinated with lupus than the vaccine. I had covid before vaccines

redredblue profile image
redredblue

I've had 3 doses of Pfizer so far. Felt a little off after my first dose but other than fatigue and an achy arm I had no problems.

Coffie profile image
Coffie

Hi there! Was really reluctant like u about vaccination as I manage to keep SLE under control without meds. First Pfizer shot nothing. 2nd shot first couple of days a little bit of sore arm, days 3-5 odd heart pulse after eating and a lot of burping (probably stomach) days 6- now which is almost two weeks i have muscle stiffness and pain but nothing i cannot deal with and that interferes with my every day life. I have not taken any pain killers, its manageable but at the same time i started moving to a new house the day after the 2nd shot like a crazy person i am😅 So my fibro flare was exaggerated by the fact that i rarely sit down! All my doctors advised me strongly to get it as the danger of severe flare after natural immunity is much bigger with unpredictable results. As my reumy said: " with the vaccine whatever the case, we can control it effectively"

Roarah profile image
Roarah

If the vaccine causes a flare just image what covid would do to you!I will take a flare over incubation and death any day.

Zainy10 profile image
Zainy10

Thank you for your advice. There’s no way around it - I booked it and chickened out. I’m on a 2 week holiday, just didn’t want to get sick.

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