Survey on your experience with COVID-19 Vaccination

[Jess-UKMasto]

smartsurvey.co.uk/s/UKMasto...

I am very pleased to share here the link to our survey on COVID-19 vaccines and mast cell diseases. We will hope to capture your experiences as you get your vaccines and then share that information back to our community once we have enough responses for the findings to be helpful, and then keep sharing at regular intervals as we learn more.

If you have had your first vaccination, please consider completing the survey. You can answer it at any point after your vaccination, but we do ask how you're doing a week after, so feel free to see how you do for a little bit before responding. We will create a second survey when it's time for people to begin getting their second dose, as responses to a second dose could be different.

Many thanks to all of you who are willing to share your experience so that others can make their own vaccine plans with a bit more information!

We are working with Dr Priya Sriskandarajah, a fellow working with Dr Deepti Radia this year at Guy's Hospital, and hope to publish these findings in order to help more patients.

[Artwise]

Hi Jess l would like to take part the: Survey On Your Experience With COVID-19 Vaccination. Can l apply if l have not been diagnosed with Mast Cell Disease buthave symptoms of the disease?

[Jess-UKMasto Administrator in reply to Artwise]

Hi Artwise. Two of the options for your "diagnosis" are suspected MCAS or suspected systemic mastocytosis so there are options for undiagnosed people : ). We would be glad to know how you've done with a vaccine. Thanks!

[Artwise in reply to Jess-UKMasto]

Hi Jess, here is my report : Covid-19 Vaccinations For Over 70's.Venue: The Richard Herrod Leisure Carlton .The vaccination programme is run by The

NHS Staff And Volunteers . l had my first Pfizer Vaccination 4.2.2021 @9.19am.The second Pfizer Vaccination will be given 23.4,2021 @9.10am.A Vaccination card is given to everyone and is kept by them as proof of having had two Vaccinations when the treatment is completed. My Side Effects lasted from 4.2.2021 till 6.2.2021 and consisted of Tiredness which lasted about 3hours then l picked up , there was swelling on the injection site 11am-2pm.A peculiar Pin Prick Rash appeared pink in colour it didn't itch this was about( 4pm and left at 6pm )it was on the left outer and upper arm and not near the injected site, muscle pain in my left arm didn't leave till Saturday morning. l was a little tired Friday and redness on the injection site. There was an unusual reaction when l had my injection a surge of warmth travelled down my arm ?and and at the same time l had lower abdominal discomfort which lasted till 10am.

The NHS Vaccination programme was well organised, friendly and helpful .l left the building (after sitting for 15minutes in a special waiting area)then checked out.

l am pleased that it went so well. Just one more injection to go !

[Jess-UKMasto Administrator in reply to Artwise]

I'm so glad it went well for you! That's a helpful description of your experience for others to read! If you've also filled in the survey then your data will be included in our analysis that may be published for other doctors to see! Thanks again for your report!

[Artwise]

Hi, Jess just finished the survey!

[Chancery]

I'll just add in case it's helpful to anyone that I refused the Covid vaccine because of reaction issues. I took the flu vaccine this year, for the first time, to test it out with a view to getting the Covid vaccine. On the day, I warned the nurse I might have a reaction. I got the injection, all painless and fine and went and sat for my ten mins. After five I was fine and reassured the nurse there was no problems. Then I wasn't fine. My heart started racing like a mad thing, beating oddly and I felt really nauseous and light-headed, then it would settle again a bit, except for the nausea. Then it would do it all over again. Long story short, I was there for over half an hour and apparently my blood pressure dropped really low. They kept testing it and eventually it did pick up. I left simply to get out the place, although I was still feeling sick and weird.

I remember I kept saying to the nurse that it felt like my body had had a shock, and later found out that going into shock is part of anaphylaxis. I've never had an anaphylactic reaction so didn't know this.

Symptoms of intense headache and nausea lasted for two days, along with extreme tiredness. Injection site was stiff, swollen and red for over a fortnight. Later it became itchy and irritated with a persistent red wheal round it. That took a long time to go, maybe a month. Arm was stiff and sore and very tender, with sore muscles, but otherwise I was fine. No repeat of heart issues at any point.

It was enough to put me off having the Covid injection as that isn't time-tested.

For reference I have a MCAS diagnosis.

[Artwise]

Hi Jess,l have had my second Pfizer vaccination on the 23.4.2021 is there a second survey?

l would like to fill it in if there is one.

Here is my response to the second Pfizer vaccination:23.4.21 11pm sore arm and restless night. The arm was sore for3days. l had sore neck and shoulders for l day and that was on the

24.421. The injection site became inflamed and was the size of 5 pence piece and lasted 6

days without any pain. l am feeling ok and pleased that l am fully vaccinated.

[Jess-UKMasto Administrator]

Hi Artwise, sorry I missed this post! I'm so glad it has been going pretty well after your second jab. I had that sore neck and shoulders with my first but luckily not my second (mine was AZ). A second vaccine survey will be up soon. Apologies for the wait. If you just keep a note of your experience then you'll have it for when we've got it up. Thanks for your willingness to respond!

[Artwise]

Hi Jess glad to hear from you. l have kept my notes and look out for the second survey.l was pleased that your vaccinations have been completed and that there were no unpleasant reactions.

[Jess-UKMasto Administrator in reply to Artwise]

Thanks! I'm relieved to be done with it and know in a few weeks I'll be even safer!