Refused COVID-19 vaccination

[Tiggerakafidgity]

Hi all

I’m new to this part of the site but oftern frequent the other parts with my on going illnesses lol.

Well,I merrily turned up to get the injection after waiting for what seemed ages to be greeted by a lovely old lady.we went through the standard check list.

Then I mentioned mcas.she as a lot of ppl had not heard of it so I had to try and explain it.

So she walked of to see the head nurse.

She came back asking if I could explain.so I did.

Then I asked to see the most senior person in charge who was another clinical lead.

They explained that even with 1% chance of having a severe reaction I could not have it.

The reason

There was not one doctor or paramedic with the appropriate meds.

So I kinda said well if that’s the case then it must be safe.

They went quiet and then said no.

They suggested I speak to my consultant,so as per usual I’m running around helping my self.

Seems to be getting a habit.

So I emailed my consultant who was ever pro active and said he was on the case.

I gave the doctors a call where I was told I was blatantly lieing about not being able to have the vaccination because no doctors or paramedics there.

I got a lovely text from the docs asking the standard stupid questions.

I replied with “look at my medical notes seeing as your to busy to call me”

I got home only to discover that the plastic filling I had in a tooth less than a week ago has yet again fallen out only to take half my tooth with it.she done three fillings in three seperate teeth over the last six months and every one has broken half a tooth of.

I was actually having a pretty good day considering.

Then I spent the best part of 3 hrs phoning around about 30 dentists to be told no sorry only private.half way through the list I was still be slightly hopeful I wouldn’t have to go back to the Same old dentist tomorrow.

What a day hey.

And I’m still smiling 😷

[Jess-UKMasto Partner]

Tigger, I'm glad I know that things looked up after that rubbish day! Glad you're here.

[Tiggerakafidgity in reply to Jess-UKMasto]

Hi ya

You are correct in that mcas can be a very lonely place in the fact that half the doctors don’t know what it is.my new doctor couldn’t remember what mcas stood for.

She is actually pretty supportive to be honest.

She asked me to email a summary of what’s going on with my self and what other meds im taking as there is a lot of trial and error with dealing with mcas.

I’m pretty impressed as she said she would call me next week

Once she has read my 8 A4 sheets then we can then move forward.

It’s a shame though that I managed to get a proactive secretary who got me an appointment for the injection next week and my doc didn’t do what she was supposed to do.

This is why I like to sit in front of a doctor to thrash it out with them and make sure they actually press the go button on the pc to get a prescription sent to pharmacy but that’s a whole different story of let down and total dispair and disappointment.

Any way that’s for chiming with your support the other day.

I was like wow I’ve actually got some one backing my corner with out having to ask,so I’m so very greatful that you around.that sure did help keep my pecker up 🌞🌞🌞🌞😷😷😷😷🥳🥳🥳🥳

[Tiggerakafidgity]

Morning Jess

Its not stopped.

That day I broke a tooth in half.

So booked dentist for next day.

Car battery was flat so miss appointment.

So I’m gonna tough it this morning.

I’m of to purchase a metal nail file to file of the sharp edges of my tooth as it’s cutting in to the edge of my tongue.yer I know madness hey

IM STILL SMILING THOUGH 🌞🌞🌞🌞🌞🌞🌞🌞😆😆😆😆😆😆😆😆😆😆😆😆😆

[dobbo2021]

Poor you. If it’s any consolation. I checked with haematology & immunologist at the hospital I attend and they reassured me I could have the vaccination just to take a double dose of antihistamines 1hr before. No side effects at all from the vacc

[specksmum in reply to dobbo2021]

I was turned away from my appointment to have the Pfizer vaccine at the last minute! I sat there, nurse picked up syringe and then hospital pharmacist rushed in saying no go!30;seconds later would have been too late! I have since had the Astrazenaca with no problems.

[dobbo2021]

I forgot to say I was advised to have the AZ vacc

[specksmum in reply to dobbo2021]

Same with me. The Pfizer is a completely new and different way of vaccinating. It immediately triggers your system. Other vaccines sit there waiting to be triggered by infection.( That’s a rough description for us non specialists! )

[Tiggerakafidgity]

Is mcas also by chance an immune problem as I’ve ulcerative colitis.

I read something very interesting the other day in that over in the USA the fda has found in over a thousand foods that there are two chemicals that they are saying can cause an autoimmune problem.

It makes me laugh when you mention mcas and the ppl who should be on the know arnt and it seems the most none obvious ppl are in the know

[Agatha_33]

Hi there

Sorry to hear of all the difficulties you have had. So frustrating!

I have to say that was the trickiest part of my Pfizer injection was persuading the healthcare staff to give it, without having it done in hospital. Husband reported I was assertive with healthcare staff as wanted me to go to hospital. I did have my letter from my specialist and they did have to put it past one of the medics. It was done in a community surgery so was adrenaline etc on hand if required. The report also gave advice stipulating the particular vaccine and why (allergic to some expedients), pre-medicating with anti-histamine, being performed in safe environment (with emergency stuff if required) and being observed afterwards for at least 30 mins, to manage and mitigate any risk issues.

Without my specialist's letter, I doubt they would have done it. My local immunology department was very blase about the whole thing but did offer a discussion with my GP if required. Another possible route to consider. But I did go privately with one of MCAS specialists as no confidence in this, having been misinformed on several occasions "highly unlikely you will react."

Hope it goes more to plan next time.

[Tiggerakafidgity]

Hi all,thanks ever so much for the support and empathy.It’s much appreciated.

Ok so at the moment I’m taking various antihistamines but I’m slowly being knocked sideways as the none doseie fenafexadine as now starting to send me to sleep in the day time.

The problem with this is,is that I’m on stimulant meds for adhd.

So after two hours approximately I wake up and my jaw is chewing away giving me the symptoms of withdrawal from the stimulant meds and my head or mind is all over the place and your body goes quickly.sorry it’s difficult to describe but you try sit there sitting still and you can’t and inside your mind and body feels like it is or wants to rush around.

So when I look up mcas I get a great list which to be honest I’ve not investigated yet.

May I ask are these immune suppressant meds ?

If there not antihistamine what are they and how do they work.

[Mothertay]

I had Pfizer without any issues and the GP practice and my consultant were both encouraging me to have it. I had no side effects. I think sometimes it’s just the unknown about masto that gets people in a spin.

I didn’t take any extra anti histamine or do anything different to anyone else

[rjkb]

I have had two Pfizer vaccinations without difficulty.