Adverse reactions to Astra zenica and then Pfizer. First one im convinced clot (had 5 previous) height of lockdown so didnt go hospital. Ddimer was ok but i was so ill..lost sight in left eye hearing was on and off, temporarily plus more.... Dreadful time. 5 months to recover and debate a second. Gp says Pfizer. Day 4 my legs covered in petechial rash then breathing probs managed by inhalers and antihistamines at home. Due booster January. Go and consultants dont agree a way forward. Im in uk where all protections have been removed. Im on warfarin thyroxin and inhalers asthma/bronchiectasis. No immune suppressants. Been shielding inside 2 years. Im not eligible for the new treatments although classed as clinically extremely vulnerable. Gp said try another pfizer with no explanation as to what happened after i had it previously. He did say vaccine induced!! I turn up at vax centre in desperation for a chance of a bit of a normal life and they refused to give it to me saying your body has told you it doesnt like mnra what is your Gp thinking!! Where to go from here... ive been on tv radio press to highlight my position e.g. vax doesnt suit all, dont qualify for new meds still high risk ... isolated forever???? Dont know what to do or where to turn any more...
Vax probs no access to new meds what now - Hughes Syndrome A...
Vax probs no access to new meds what now
Hiya, to be clear I am in a similar position, I react to all antibiotics and things like Plaquenil with Steven Johnson type reactions. With the vaccines, I was taking very strong allergy pills, and got through it, but it did make me very unwell, on both occasions. As well as your GP you need your consultant in the picture. If you write any emails, (you can always get GP and consultant's PA's email addresses) and write to them. You clearly need more help. MaryF
Sorry you have had trouble too Mary..unsure whether mine is allergy when the first Astra zenica was pulmonary embolus symptoms. Terrible. Maybe the second pfizer allergy? Ive read up that other people had petechial rash after pfizer too. Ive 2 consultants who barely copy each other in to their letters. I wish they would all speak to another. Ive been battling for months. I went to the press several times about the lack of new treatments for 2 million clinically extremely vulnerable. Only 500,000 currently eligle in uk. So we have to get sick with covid first b4 a decision to treat is or isnt made within the 5 days. Thankyou for replying. It feels a lonely road and its been a lonely fight
You can email them and copy them all in, use secretary's email addresses and mark the email for the doctors concerned and copy your GP in, that way they will have to talk to each other and help you to get the best result with all of this. Keep it short, history in bullet points, drug reactions in bullet points, how you are now etc etc. MaryF
The only tiny glimmer of hope I can say- is maybe now there are better treatments now if you come down with it.
Also- at least you have had the primary vaccines. That has at least given your body some T cell memory of what to do should it encounter the enemy.
Also, I wonder, could you have a consult with an auto immunologist who could help you prepare for adverse reactions? Things like MCAS stabilizers ahead of time so your body doesn’t have such a big over reaction? Is this worth asking your rheumatologist about?
I’m curious, is there any work being done to create a vaccine for coronavirus that is not mRNA based? Does anyone know?
Hi kelly. Thanks for replying. The presenters of one radio show who aired my tale of woe took it further and a immunology consultant called me. He mentioned novavax. Said he couldnt say how i would be with it and no research had been done with autoimmune patients or patients with 3 different mixed vaccines. It is not yet available . He also said its a lottery whether i would get the new treatments, one the infusion given in hospital and then sent home, or 2 the pills sent to patients home. Just leave home for INR at the moment whilst watch friends going on holiday, birthdays, meals out etc. Feel "stuck". Best regards to you
May i ask what a MCAS stabilizer is? Im not sure if a clot and petechia are allergic reactions. I was wondering if heamatology might know why i reacted in the way i did. Im.not under heam just rheumatology and connective tissue disease . Thanks so much
MCAS - mast cell activation Syndrome.
I tell ya Cinn. I’m still wrapping my head around it. It a tough complicated old goat to learn about.
It falls under immunology technically if it’s mast cell activation syndrome, and under heme-onc if it falls under mastocytosis.
The two are related only in that they deal with mast cells in our bodies.
I did not know a thing about mast cells or disorders of them until I went to Denver Colorado and saw Dr Jill Schofield, who is an, “ Auto- Immunologist” who is an APS specialist who trained under Dr Hughes.
She told me ~50% of APS patients have MCAS. ( mast cell activation syndrome.) Those with Sjögren’s also are more likely to be in the 50%.
If we have auto immune diseases , then we have MCAS secondary to auto immune diseases.
So what is it?!
Ill send some links to you.
A diagram of a mast cell as It “ degranulates”. This is what makes us have the various reactions we have. Example- histamine release- sneeze- gets rid of offending “danger” in body. Good thing! Good job mast cell! You did your job properly. Body responds appropriately.
What about a peanut allergy? Shell fish allergy?
Full anaphylaxis? A bit much. An in appropriate , dysregulated response. These are ones we all know about.
Chocolate and wine causing headaches.
Bee stings causing waaaaay too much swelling.
Orange juice- nausea and vomiting.
Depending on the mast cell, and wats being released during degranulation, and what sysrem(s) is/ are affected will determine what histamine blockers 1, 2,3, and now in some cases 4 will be used.
Diet is also key.
nebraskamed.com/COVID/moths...
I was very curious about a non mRNA vaccine, so I did a Google search. Here is what I found:
Really useful information - thank you Kelly.My only question for me would I react as I'm allergic to trees 😗
Apparently it’s the ethyl components in the others that people tend to be allergic to.
My allergy in summer is from july august, i think weed pollen but its never been fully investigated! Would be just my luck if it was trees!!!!!!
Thanks for taking the time to do that kelly. This protein targetted vaccine was initially produced about 20 miles from me here in the uk and ive been following the trials and wider production with interest. The cincern for me is there are no trials with patients who patients mixing 3 different vaccines which concerns me. I dont react well with meds generally, anaesthetics, morphine, tramadol,. Just a sensitive (or awkward perhaps) little soul! Plus, as i say its not yet available and im really very seriously struggling with isolation after 2 years alone to continue to wait..
I agree with Mary, you need your consultant's opinion? Good research from Kelly - worth looking into?
In a telephone discussion with my rheumatologist (confesses he is not an aps expert) he said, looks like both reactions have been vaccine induced, so it looks like you and vaccines "dont go". Perhaps discuss whether a booster is suitable with your GP? Round in circles i go. I have contacted a specialised in local hospital unit i just found out about from the sister in charge of vaccine unit but they say its just peg allergy they deal with and it doesnt appear thats my problem?
Hi, I hear your dilemma- you know your in body and if medical profession can't help then only you can decide.The good news is getting the virus now is less extreme to life, you do deserve some quality of life and need to stop shielding. Scary!
I started to live again by just mixing with people/family I trust - all doing lateral tests first. This helped me gain confidence - it comes slowly.
Thankyou. I dont think i have much choice but to risk getting covid now... as any protection i may have had last summer will be fading now. They say it takes 3 weeks to change a habit so 2 years is going to be tough knowing people are walking about with covid, sat next to you etc.... russian roulette .... i would feel more confident if fully vacinated and if i had confidence with the medics but im not and i dont..... take care of yourself
You still have choices. You are still clinically extremely vulnerable (as am I) and you have doubts over your vaccinated status [note: it is possible to test if you have responded and how well and if antibodies are still there, it may be worth asking about that, may not be available on NHS, might give some piece of mind, might not help].
I am fully vaccinated but don't know if my vaccines have worked, no reason why they shouldn't have but equally no evidence that they have. I am still careful (less so than when shielding, but only a little). I do meet people I trust indoors, people I know who are vaccinated, people who have tested before meeting me, I minimize contact with people not in those categories. I do go in shops occasionally but only when I have to - food shops all online, but I do drive again (that was tricky to get back to), sometimes you have to pay for petrol. Sometimes you have to go in motorway services because you have to go...
I do also go into hospitals (which frankly scares the **** out of me), bit too much at the moment but that's a different story.
But always I limit my exposure. Still. You don't have to go big-bang "freedom day" throw all control away. You can choose, you can do only what you are comfortable with and only with people you are comfortable with (some family you may feel you have to see, and I have some of them too... but again, minimize contact). Your risk will not be zero, it only takes one chance meeting, but it will be less than with throwing all caution to the wind.
There may (will) be those who do not (or will not) understand, or just don't care, about your health situation, those who consider that going for a coffee or a drink is way more important than not putting someone else in hospital or worse. Consider if you want to meet them at all and how much you value friendship/relationship. You won't be the only one to lose a friendship/relationship to the issue, and you won't be the last, but also be aware that there are those who chose to value the friendship more for whom that choice was fatal.
It's. Your. Choice. Always. No one else's to make for you.
And lest anyone think this stuff is trivial or frivolous, I said those exact words to my wife last week when she was considering an invitation from some close friends to go out for "one last drink" a few days before pre-surgery isolation. I didn't choose for her, on principle (he says, like I'd even dare try 
). We know enough surgeons that she knew the potential price. Two/three days later (because Omicron is faster than alpha), more than one of those friends tested positive. My wife chose not to go, we chose to be really strict in pre-surgery isolation, and as a result she got her surgery and is now home with a good prognosis.
What a lovely reply Ray. I appreciate it. I dread going for my blood tests. On good days i have a little walk with a friend who masks (outside) for me. Arthritis kicking in after serious rta and many surgeries but lots of friends hv just gone bk to prepandemic life and now distanced from me. I shop online only. I did pay for a private antibody test but there was a caveat saying not suitable for people with coagulation problems did it anyway! Best result 2500. I scored 1800. As you say it just takes one contact... . I just hope the eligibility criteria for priority access to the new drugs is expanded to all 3.7 million clinically extremely vulnerable not just the immune supressed 500,000. Take great care and thanks for posting .
New to APS and worried
New & confused! ACL+ results, now what?
