Has anyone experienced Anaphylactic LIKE allergic... - PMRGCAuk

PMRGCAuk

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Has anyone experienced Anaphylactic LIKE allergic reaction to Prednisalone? as being an EpiPen holder has sadly delayed my Covid Vaccine.

Pollynolongerinagony profile image

I am 71 and diagnosed with PMR August 2019, prescribed 20mg Prednisalone. In September 2019 I had three severe anaphylactic LIKE attacks; my airways were constricted, my lips , tongue, face and cheek swelled so much I could hardly speak, my voice was hoarse and raspy, irresistible drowsiness, and wheezy. Dr. prescribed an EpiPen and Cetirizine Hydrochloride. He referred me to Addenbrooks. I was tested for food allergies etc. and diagnosed attacks were idiopathic (unexplained).

I personally believe the three anaphylaxis LIKE allergic reactions I experience were caused by my body adjusting to Prednisalone, and wonder if anyone else has experienced this as, research has taught me that, among the most common corticosteroid causing anaphylaxis LIKE allergic reactions is Prednisone. In some people the allergic reaction causes these symptoms: trouble breathing, swollen tongue and throat and drowsiness, all of which I experienced on after taking Prednisalone , none before nor since.

This week, my Dr. rang to say I must have my Covid vaccination in a full resuscitation setting , at a designated local clinic, and as I am on Warfarin I would also require a special long thin needle to avoid bleeding out. I attended my appointment on Tuesday, but sadly was refused my vaccine by the Senior Practice Dr. who said he could not vaccinate me because of the previous Anaphylaxis reaction, and if I had a severe anaphylactic reaction, there was a current ambulance delay of up to 4 hours, and I must have my vaccination in Hospital setting. Utterly Devastated. I rang my My Dr. he has now written to my Consultant at Addenbrooks and asked if they can specify my allergy, (which they can't as idiopathic), if I should have the vaccine, which one and in what setting. He said I may have to travel to Addenbrooks (2 hrs away), for more allergy testing, and possibly even have my Covid vaccination at Addenbrooks Hospital.

I am CEV and been shielding since March, everyone has done brilliantly well getting their vaccines, and I really want to have mine too, but unfortunately I'm in the group who will need a bit more research before I can get the right one in the right setting, at the right time for medical requirements. Feels a bit like everyone is passing the buck... and I'm the buck. Is there anyone else struggling out there with this scenario? I be so grateful for your feedback. Keep Vaxxing. Best wishes Polly.

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Pollynolongerinagony
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jinasc profile image
jinasc

Hang on in there Polly, both my Brother and I had anaphylatic shocks.

You could have been describing my brothers attack. On the way home from the golf course, had only drunk water so no answer as to why.

Me caused by Pencillin. Both of us have had Oxford Astra Venica with no re-action at all.

Brother went to vaccine centre first, said no and and sent him to Hospital 2 weeks later. he also had AZ and had to sit for 30 mins before they let him go home and he was fine.............no re-action at all.

Me, in and out in less than 10 mins. They explained nothing in the AZ that would re-act with the cause of mine and yes I am on Warfarin (for years) they used the extra thin needle, warned me I might get a red patch or slight bruising. Did not have to sit for 15 or 30 mins.

Result for me, no bruising and no redness zilch, and this is the first time I have ever had a vaccination.

They are looking out for you and Addenbrooks is a very good hospital. Does it matter it is 2 hours away in the great scheme of things. Just make sure you have someone to drive you there and back. Sometimes your GP has volunteer drivers available. Ours has a system for those who cannot make the journey in normal times never mind now.

Pollynolongerinagony profile image
Pollynolongerinagony in reply to jinasc

oh jinasc, you have made me cry with relief, thank you so very very much , sorry to be emotional, you have given me hope, that is the best news of encouragement I could have wished for bless you. The fact is I dont know if I had actual Anaphylactic Shocks, or if they were anaphylactic LIKE allergic reactions to starting and adjusting to Pred. I will let you know how I progress, thankyou so very much for helping me, I'm so grateful, very best wishes to you and your brother. Polly

maria40 profile image
maria40

I had some trouble getting mine as I had had anaphylactic reaction to penicillin but 40 years ago so can't remember all details. At the first vaccination clinic the duty doctor would not vaccinate me as it should be, he said, within a hospital setting. I then rang my GP who said, following the government's Green Book advice, that I could have either vaccine in a normal setting. So when I got my next automated text offering vaccination off I went, only to be told they would only give AZ vaccine but they didn't have any. Phoned GP surgery and spoke to Nurse Practitioner who discussed all my allergies in detail and it was arranged that she would give me the vaccine in the surgery.

I did have the AZ vaccine with strong reaction but no anaphylactic signs.

It was a bit of a struggle but obviously as yours is idiopathic it will be even more so.

I can only say that persistence and pestering won through in my case and can only wish you luck with yours.

Pollynolongerinagony profile image
Pollynolongerinagony in reply to maria40

Maria you are marvellous, so brave and tenacious, you cannot know what it means to me to know there are kind folk out there in a similar boat as mine, helping and guiding me through this nightmare to get my vaccination... bless you for helping me and I will let you know my progress. keep well and safe, well done, hugs Polly so glad to have you in my boat. it's not the titanic after all...

maria40 profile image
maria40 in reply to Pollynolongerinagony

Good luck. Do let me know how you get on

Songbird69 profile image
Songbird69

Hi Polly, I too have had anaphylaxis. Once caused by an MRI contrast but they didn’t know if it was because of the bowel relaxant they used in conjunction. Never really explained, but a frightening experience. Most recently I suddenly had anaphylaxis half way through a course of penicillin.

I was worried about the vaccination but went ahead - and like Jinasc, was absolutely fine. I had the AZ - better I was told if you suffer from allergies. I was also told that when I get the second jab, I should wait for 30 minutes afterwards, as if there is going to be any kind of reaction, it is more likely with the second jab.

I am sure you will be fine - and I would rather have had mine in a hospital setting given the choice.

Good luck. x

Pollynolongerinagony profile image
Pollynolongerinagony in reply to Songbird69

you are wonderful, thankyou so very much for your kind encouraging help, I will let you know how I get on... glad we are all in this boat together, and its not the Titanic after all, as I was having a terrible sinking feeling till all this kind help came along, bless you, Polly.

jinasc profile image
jinasc

That is the first reason in the aims for PMR GCA. When setting up the charity the first aim was and still is Support. It is still run by Volunteers, except 2 part time staff. I just wish more people would join or just make a one off donation, every penny helps.

Whilst all of us a human, we are not all the same, but you can bet your bottom dollar (or should that be pound) that someone somewhere has had similar......so just remember - reach out always.

BTW I had GCA for 5 years and remission ongoing.

Twopies profile image
Twopies

Yes, I had a reaction very like yours to prednisone in the early days of pmr and pred. But I didn’t have swollen lips or red splotches, just every other symptom of a shock reaction. The er docs said I was having an anxiety attack. I told them (when I could speak) that I wasn’t anxious. Later one of them said, “pred drives some people crazy.” I told them I wasn’t crazy, I was sick.I’m not signed up to get the vaccine, I’m too scared of what it might do to me. Not that I might have an anaphylactic reaction, just that my body hates every put into it. Best wishes to you—they have plenty of safeguards in place so I hope you get yours soon, keep us posted, ok?

Pollynolongerinagony profile image
Pollynolongerinagony in reply to Twopies

wow! I cannot believe the ER treated you like that, implying we are having anxiety when it is clearly a physical allergic reaction. when in the clinic practice manager refused to allow my vaccination, and she repeated herself five times, I was masked up, had my visor on, am breathless, and sitting on my stroller, and she treated me like an 90 year old deaf dementia patient, and turned to speak over my head literally to my son... I was not a happy bunny. I am a german translator, speak 3 other languages, have a degree and am perfectly lucid, but she rendered me invisible and not capable of communicating with. she was bit flustered to be fair. I totally understand and respect yr decision not to have the vaccine. it is not compulsory and it is your absolute legal right to decide what is right for you personally. i am deeply grateful you took the time to help me, and i will let u no how i get on, bless you, polly

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