LUPUS UK

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Offered spring booster - bit of a dilemma

I had Moderna as 1st booster (AZ for first 2 doses, no reaction whatsoever!) in mid December, had a bad reaction in the lymph nodes around breast and arm - not in the side of the injection. Took the GP and me several weeks to work out what was possibly going on - she did put me on list for breast clinic but no appointment yet, still having pain though not as bad as in December & January. Also had a big flare up about 10 days after booster, which lasted a long time, but 2 weeks of doing very little incl not having my daily walk, did improve things; still getting extra problems with pain in tendons.

Now I have been put in the category for spring second booster, have had email confirming not a mistake, and have since read that (in Cymru/Wales anyway) they have broadened the category a bit. An appointment for Wednesday arrived on Saturday and in a real dilemma: Should I have it?

Will I be able to ask for Pfizer?

Will I be able to speak to GP on Monday (I don't want to cancel the day before)?

Don't want to put off til week after as already a busy week and go on holiday at the end of that week for 2 weeks with partner!

Should I ask to have appointment at the end of June when back from holiday (they are available until June 30th) - or is it better to have before if I'm mixing a bit more (wear mask in supermarket still)?

It's so hard to work out the risks. My Ma would be vulnerable to covid (have avoided people with colds for a number of years now) and is not having any more boosters/vaccines because AZ booster (she can't have Moderna or Pfizer because of allergies) made her very unwell, it would help protect her (I live with parents) if I had 2nd booster.

There are so many variables here aren't there...

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flo_IarFachYrHaf

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30 Replies

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Boosters?

But how many and which one!🥺🧐:

“Moderna (Spikevax) COVID-19 vaccine received U.S. Food and Drug Administration (FDA) approval on January 31,2022, for individuals ages 18 years and older. Once vaccines are approved by the FDA, companies can market the vaccines under different brand names. Spikevax…”

I’m still shielding forever.

In UK they are using moderna and pfizer as boosters and so far not seen them marketed under any other names! though for some people it was a 3rd vaccine rather than a booster...

I had AZ twice and then pfizer and was ok with just a sore arm for all but then I had moderna for my 4th and I have never felt so ill. I didn't have a temperature but I shivered harder than I have ever shivered in my life. I ached and would have contacted my GP if it were not the weekend. Thankfully after a few days it began to wear off, but no vaccine has ever made me feel that ill before. I am truly grateful that I had moderna as a booster so only received a half dose as I dread to think what a full dose would have done.

Sorry to hear that.

moderna affects lymph nodes as a 1 in 10 side effect whereas Pfizer is 1 in 100. As mine react to all sorts of things I wish I'd known that and said please give me pfizer booster - they had 3 different vaccines at the centre where I got my booster in December.

This will be the 4th different place I've had to go - and if I didn't have my Dad to take me I couldn't get to the one I'm going to except by Bwcybws/book a bus...

Hi I understand your trepidation having reacted before .I can only give you my experience. I have had 2 Astra zeneca and 2 Pfizer and was called for my spring booster. I reacted to my 1st Pfizer with high temperature, chills and migraines for 10 days . It took me a month to feel better . The next one similiar but not so bad. I confidently thought my body would recognise the Pfizer this time and be okay. Unfortunately not, I had it on Monday 16th May , within 4 hours headache and chills, I could barely get out of bed Tuesday . Felt like flu I felt so ill I took a covid test (negative) .2 weeks on I feel like I am flaring not wholesale but slightly,so I am disappointed.

Saying that I would have another. It’s better than Covid!

But I will factor in down time next time, so if I was you and had a holiday booked I would be tempted to get it the day you come back ,but book it in now.

Hope that helps and I don’t mean to sound negative just helpful. Have a lovely holiday M x

Hi, I had Pfizer for my first 4 vaccines and reacted after all of them with flu like symptoms. I had my fifth 10 days ago and had Moderna (which is now called Spikevax) and although I felt a little tired and nauseous I was otherwise ok.

If going on holiday overseas I would definitely have it before I went - I had my fifth because I am going to France in 10 days for my son’s wedding and am flying.

my holiday is only in the same county as I live, but mixing more so probably a good idea.

Spikevax is a curious name...

hope you have a good flight.

Thank you.

I hope all goes well with your booster and you have a lovely holiday.

Thank you for all your replies.

I have established that it is Pfizer so I will go ahead with it and see what happens... a cocktail of vaccines!

Let us know how it goes. I had 2 doses of Moderna and a Moderna booster. I had a strong reaction to all 3. Fever with chills and rigors, muscle twitches, nausea, high heart rate while trying to sleep (first night only), joint pain, heartburn, cartiledge pain. All resolved. Of note...I had swollen lymphnodes in my right armpit that were not painful, I went for a mammogram and breast mri. Then I was sent for a biopsy (mom is a breast cancer survivor) and was diagnosed with non Hodgkins Lymphoma. A pet scan showed other involved lymohnodes in my groin and abdomen. Since it is a very slow growing cancer I nost likley had it before the vaccines. It may have flared up from the vaccines though. I asked my specialists about my strong reactions to the vaccines and they recommend I try Pfizer for my second booster. We are all so different. Last thing, I had my vaccine antibody response tested and I had >2500. So atleast the reactions were worth it.

Thanks for that info Pisces🤗 I had a Moderna booster yesterday and I feel rubbish!! Have previously had two AZ n a Pfizer. When I got to the vaccination centre n discovered it was only Moderna on offer I hesitated but was reassured n we had travelled a fair way to get there..so I went ahead coz I've had no problems before with the jabs.Interesting what you said about the heart racing..I had that last night which is unusual for me n it worried me a bit..reassuring that you've had that symptom for first night only too..so thanks again 💜🌈😽😽xx

Yes my fitbit verified the high heart rate. I also had a vein or artery that bulged on my left temple. Sent photos to my doctors and they said not to worry if that was painless.

Here is my Moderna sleeping heart rate vs regular sleeping heart rate, recorded on my fitbit.

Heart rate after Moderna vaccine vs my normal heart rate.

That's says it all n it's how I was thinking it was going last night..the only word I can think of is frantic!! 😹🌈😽😽Xx

It was definitely unsettling and I was received that it did not continue. Things are definitely more scary at night.

My chest was definitely pounding..no Fitbit required!! 😹When that kinda thing happens in the middle of the night it seems magnified too I find. Any pain is magnified at nighttime 🌈😽😽xx

so fitbits can be rather useful

Yes, I started wearing one to monitor my resting heart rate, sleep quality, and to monitor my heart rate while exercising. It really put my mind at ease. I could not distinguish between anxiety and elevated heart rate without it and am less stressed out now.

Thank you for your information. It is good to share - I suspect Moderna not so good for people whose lymph nodes easily get in a tizz!

It's bad you have the cancer but good it's been found...

I will be chasing up the breast clinic thing - I was due a routine mammogram at the start of the year - found information suggesting not to have a mammogram or similar for at least 6 weeks after a moderna vaccine.

I had Moderna booster yesterday n I've had a rough night n today feeling pants. I'm glad you've had confirmation that it's Pfizer you'll be having next. A cocktail indeed!! I had two AZ n a Pfizer for the third..no problems with either of them. I was reluctant to have Moderna but went ahead anyway...this one has knocked me for six!! 😔

Hope all goes well Flo 🤗Enjoy your holibobs 💜🌈😽😽xx

Hope your Moderna effects wear off soon, it seems a bit of a one, and must be frustrating after the others being ok. I know they say some reaction means the immune system is working but Lupus immune systems work in such weird ways I don't know if it's good or not - if I get any bug, even sickness, I get a flare up!

I wish I'd just rung the helpline straight away - but not overly fond of phone and felt a bit embarrassed requesting a particular vaccine. But had spoken to lovely receptionist at GP surgery who said would be the quickest way to find out and if they were offering only moderna to get back, but she thought it might be pfizer.

And thank you, I hope any problems from booster will be getting less by time I go away - it'll only be in my home county, though maybe a few days in the big city of Swansea!! There will be sea swimming involved, that'll cure anything... I have a double layered burkini face cover and dark glasses, last year a young child said excitedly: "look there's an alien" which is exactly how I thought I looked especially when wet. I've been determined to find ways of still going outdoors when very light sensitive!

May we all make our way through this... x

figure on a beach in a blue burkini with green face cover and dark glasses

This is what I'm thinking tbh..this IS a reaction! I'm on methotrexate n Pred so I'm accentuating the positives 😁I booked the earliest appt yesterday but the sun was out in all its glory n I was being pushed by hubby in wheelchair as we've got no transport so I was out in sunshine for about 1 n a half hours..I had new rash leggings under my trousers to protect my knees and all the other kit pretty much what you're wearing there except I had the wide brimmed hat on too!!

You're rocking the Lupie going for a swim look!! I tend to think in my head that I'm a celebrity in disguise!! 😹 You're a Lupie mermaid 🧜

Best of luck with the Pfizer on weds 💜🌈😽😽xx

Hope you feel better soon KK...i have my 5th booster on 11 th June xx

Thanks Spaniel 🤗Good luck for 11th 🍀💜🌈😽😽xx

🤗😚

hope it goes well for you

Thank you I reacted to no4 and ive just had a lung flare so I'm abit wary but I had no4 in Jan and immunity wanes at 6 months so I'm.going yo take the plunge x

Oh what a pain having no transport, bless your hubby for getting you there - I don't drive but my father will take me to the vaccine centre not on a bus route... Rash vests & leggings are useful day wear under dresses aren't they

yes celebrity in disguise! I was at the beach last May for my birthday, too windy for umbrella and eating a takeaway so had my huge hat (that I made - more bonnet than hat) on and dark glasses...(another) observant young girl pointed out the rock star in disguise!!

I bet you rocked the look and looked gorgeous 👌 I like my hats and sunglasses.... . Xxx

I am in a similar situation to yourself, but am in Scotland so arrangements may not be the same as in Wales. Like you I had no reaction to Astra Zeneca and would love to have that again but have been told it is not possible as this vaccine has been reserved for a certain category of people ( don’t know who they are). I had a very slight reaction to my Pfizer 3rd vaccine which was fine. However, my first booster which was also Pfizer mentioned that it contained COMINARTY* ( need to look for name on info sheet given at time of vaccination - and I was given it AFTER I had the jab so not much help especially as it said you should take advice from your GP if you are immunosuppressed or taking steroids) . Not sure if ‘contained’ is the right word but other Pfizer ‘contained’ another name. I had a very bad reaction to this and when I phoned my GP she agreed with me that I should not have it again, but ask for a different one. So I managed to find out by visiting a nearby town hall that Moderna will be the vaccine given out there, commencing 10 June. As I already had an appointment locally for the Pfizer jab but said I didn’t want it, the town hall staff told me just to turn up on that day early in the morning. Not necessary to make an appointment. So that is what I intend to do. It could be that I will have a bad reaction to this too, as one of my friends who is on a cocktail of medicines has already had Moderna and had a bad reaction, but I will give it a go in the hope it won’t affect me too badly. The following is the reply I have received today from the Public Health Protection Unit in Glasgow:

Each time a person is vaccinated, there can be different reactions. It does not follow that you will experience the same reaction if it is Pfizer that you are offered for your booster. The booster protection is just as important as the first and second doses, and I'd strongly encourage to please accept it. Reaction likelihood is 1:10, according to research, but do appreciate statistics go out of the window if you are that one! Please do though go ahead.

I am sorry to be so long winded but hope I have been of some help. All the best.