Vaccine

[middevongal]

Hello, I have finally been invited for my vaccine! Long story but hospital have taken ages to arrange a time when I can have it with them as they said that was their preference. They have phoned me today and asked me if I knew of any adverse events for mastocytosis folk after receiving it? They said they had nothing to go on apart from the green book guidance. I am aware information may be being gathered but wondered if anything in particular was coming to light or being flagged as a potential risk/complication. They are planning for me to have AstraZeneca.

[dobbo2021]

Hi, I was advised to have the AZ vaccine due to my Systemic Mastosytosis. I was also advised to take a couple of Antihistamines 1hr before my appointment. I was absolutely fine. No arm ache. A bit of a headache the next day & feeling of tiredness. Hope all goes well xxx

[middevongal in reply to dobbo2021]

Hello, thank you for your reply. I’ll certainly take the antihistamines before my appointment. Pleased you’re all done and that you had no problems other than the expected headache.

[Stone17]

Hi, glad you are getting vaccine. I have had two doses of AZ administered at GP surgery. Took one Cetririzine tablet one hour before each. Also carried my epipens just in case. No problems on the day but headache on next day each time. Also pain at injection site both of which are common to many people. Strange thing was a hot, red rash on upper arm on day 10 first time a day 6 second. This resolved itself within a few hours using ice pack to cool things down.

Good luck with yours, your doctor seems to be taking an interest which many don't. Let us know how it goes.

[middevongal in reply to Stone17]

Hello, thank you for your reply. The rash sounds odd but pleased it resolved quickly for you. I’m looking forward to getting it done, I’ve felt a bit left out these last few months!

[GW_Monty_IK]

Hi,

I have MCAS and before I had my vaccination I sent quite a few emails and made some phone calls to try and get some more information on the vaccine and my illness.

I was given an informative file regarding covid vaccination and mastocytosis from the U.K. Mastocytosis support group. I’ve attached an image from the file to show what measures should be taken prior to vaccination. I’m unable to attach the full file here, but if anyone would like it, you can contact the support group directly or I can send via email if you provide your email address.

I’m due to have my second dose of the AZ vaccine in 2 weeks. I had a fever and headache the evening of my vaccination. By morning I felt fine. However, a week later I was suffering from headaches, an increase in my usual mast cell symptoms and heart palpitations. This has carried on for 9 weeks now. I’m currently under investigation by my Drs, and the consensus so far is that it’s likely I’m suffering from long-Covid and not vaccine side effects - but it’s not something that can be proved. I will be going back for my second dose.

I hope this helps.

[middevongal in reply to GW_Monty_IK]

Hello, thank you for your reply and sorry to hear you’ve still got those symptoms. It must be frustrating not knowing the cause. I’ve got a copy of the information issued by the Mastocytosis group, very helpful indeed and I did share it with my doctor. I think they seem to be being extra cautious with their approach but I appreciate the effort they are taking.

Good luck with your second dose and I do hope your symptoms ease very soon,

[Jess-UKMasto Partner]

It's nice to hear that they've asked for input from you about how patients are doing. On the whole mastocytosis are tolerating the jabs better than perhaps we expected, given the drama of the first day with back in December with several cases of anaphylaxis. In the data we've collected the vast majority have had no more than the usual side effects (headache, fatigue, nausea, fever, arm pain) for a few days. A few have had bigger reactions and a small number have had anaphylaxis. From our data we cannot conclude one way or the other whether AZ is better than Pfizer because the more reactive patients were directed to AZ on the whole, which means people were't randomly assigned to their group. But the rate of reactions was about similar in both groups. Many have had Pfizer here in the UK and Pfizer or Moderna in the US and have been ok from what I am reading in the support groups around the internet. The clear exception would be if you have a known problem with polyethylene glycol or other ingredient. If you are someone who experiences frequent anaphylaxis that's an additional reason to be watched carefully in my view. We don't have enough people who reacted in the data we collected to see clearly if there is a correlation between the frequency of anaphylaxis and whether people had a reaction.

I've had both of my AZ shots now. My mast cells seemed oblivious to it for the first five days (though I did have headache, low fever, nausea and fatigue) and then at about five days my mast cells seemed riled up for a few days, though not in a serious way. With this second one, which I had only on Saturday, I only have a sore arm. I'm relieved not to have the other side effects so far, as it wasn't terrifically pleasant (though better than COVID from all reports!!!). I hope it goes very smoothly.

[Gladiator10 in reply to Jess-UKMasto]

My experience is the exact opposite, I had really mild symptoms with the actual covid infection last March, whereas the long covid symptoms I've developed since have been horrendous! MCAS and autonomic nervous system symptoms are only just beginning to resolve a year later due to drastic changes to my diet and lifestyle!