Hi Guys...... Not sure if I have asked this on here before BUT, have any of you with RA had any anaphylactic episodes?

I have had four episodes of tongue swelling in the last four months, the first one ending in 3 lots of adrenaline and a hospital stay. Since then it has been a case of antihistamines and a short course of steroids, whoo hoo pain free for a wee while. I have actually stopped going to the hospital now because I know how to control it and I keep the meds in the house at all times.

The consultant has basically said that it is auto-immune (really?!) and I am allergic to myself............. i.e. the inflammation etc. that is going on in my body. I had these episodes about 8 years ago before the RA started but have had nothing until the last four months. All of which makes me a bit suspicious of what might happen next! Would be interested to know of any others who have had this experience, I should also add I have hypothyroidism.

Cheers

Wolfy

12 Replies

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  • Have you actually seen an immunologist or was it the rheumatologist that said it was autoimmune? If you haven't seen an immunologist I'd be pushing to see one. Being allergic to yourself does sound a bit odd for throat swelling though.

    Also, have they really ruled out an allergic reaction to something more specific? Is there any possibility its one of the meds you are on? Depending on how often its happening, I think I'd be wanting some more formal allergy testing from a proper immunologist - while steroids might work really well, if you end up needing them too often(i.e. more than once every three months) you could find yourself developing some of the nastier side effects from too much steroid (losing adrenal function, or osteoporosis being a couple of them). I was referred to an immunologist for allergy testing a while back and couldn't get in on the NHS because I hadn't had an anaphylactic reaction, and their waiting list was too long to take people who hadn't. If you have had an anaphylactic reaction, then you should be able to get taken seriously and investigated properly.

  • It was the immunologist (waited 3 month for appointment which isn't so bad) that told me this and he did tell me it was auto-immune, I think the allergic to myself was basically tongue in cheek. He took blood test but no formal testing was done, I think that is mainly down to the fact that he has A) seen this before and B) it takes 30 - 60 minutes for it to get to the throat affecting stage. I have to see him again in feb but I was interested to see if anyone else had been through this.

    I wasn't on any drugs at all when it happened 8 years ago and it is the same consultant that I am seeing. He tell me I am an interesting case ;-)

  • Well I've never ever related the two things but I was diagnosed with RA earlier this year but onset started 2 and half years ago. I had an anaphylactic episode about 5-6 yrs ago. It was slower than most reactions, started with a rash the within an hour coughing, difficulty swallowing and shortness of breath. Went to hospital for the works and recovered quickly.

    I was referred for allergy testing which revealed nothing at all.

    Weirdly my daughter who was 5 at the time also had one 6 weeks later. Her face swelled like a balloon followed by a week of very severe urticaria. Allergy testing again revealed nothing.

    I've had no further problems since and no idea why it happened.

    Interesting topic though all this auto immune stuff. I have rhesus neg blood group and after my first child even having anti d developed anti bodies that attacked all future babies.

    Some of us must be sensitive souls!!

    Let us know how your your research goes Rx

  • Yes Ive had a couple of episodes of anaphyllactic shock.....my first was in 2008. I too have ended up in hospital , but I cant control mine in any way. Within seconds Im covered in hives, my tongue, throat and lips swell to epic proportions. Im gradually reacting to lots of things. Im now not allowed 4 types of antibiotics, mangoes, guavas, bananas or nuts. Ive been under an allergist/ immunology clininc at Heartlands in Birmingham since it started. You really need to push to see one too as they will do lots of tests ( pinpricks on arm) to decipher whats making you react. Good luck and hope you manage to continue to treat it yourself x

  • Hi... I had a friend who had swelling of the lips and/or tongue and/or eyes .... she and her mother had put up with it all their lives. While she was studying nursing with me in the late 70's they were finaly able to tell her that she had inherited a mutated gene that made her deficient in the first of the complement levels C1 and c1 esterase. The condition is called C1 INH which includes her syndrome of hereditary angioedema or HAE. It affects about 1 in 50,000 people. There is also AAE which is aquired and just shows up in someone at an older age and they have no relatives with it. If you look it up on google images you will be able to see if its the same as yours or not...

    This one isnt anything to do with RA but it is classed as an auto-immune disorder.

  • Thank you for all your replies. Interesting that so many people (have also had PMs from members) with RA have had Angio/Anaphylaxis in some for or another. I don't think mine is like yours Zaggill, my Sister is in the same boat as you and hers, like yours reacts VERY quickly to whatever she has the allergy to.

    I had allergy tests many years ago and I know I haver minor reactions to certain things............... latex, cornflour but I have eliminated (stopped wearing my latex cat suit years ago lol) these from my life for years. I shall just have to see what immunology get from the bloods.

    K

  • I have had the hives and burning mouth before the RA raised it's ugly head. I did go to an allergist but only reacted to things in my everyday environment like grass, trees, and animals. I control it with antihistamines, but have had no problems with it since on Sulfasalazine for RA. I thought maybe my body was reacting to the inflammation. It is good advice to go to the dr to get the testing done. Good luck to you.

  • In my opinion it is hard if nigh difficult to find allergists and immunologists in the UK. Having said that I have had four anaphylactic shocks. From parsley - oxalic acid, piriton - lactose on the outside as their is with many tablets, bananas and onions. Bananas is also in the same family as rubber so be careful if allergic to one you might be allergic to the other. Might means might not. Be a detective and if it happens write down everything ate and injected and taken in prescription form. Then when one occurs hopefully you can trace back to what you had and find the root cause. This most times work and the only real way of finding out if you have an allergy or not. When you do discover the root take your diary and notes to the GP for confirmation as it saves then doing a load of tests when one or two is easier to check.

  • I also had a knee with a neophane [sp] brace and it caused my flesh to swell up and leave ugly weels of weeping flesh. Neophane is made from rubber. If allergic or intolerance to bananas and this happens it is the crossover allergy. I can't even use a pencil latex rubber. Use plastic.

  • Hi skeggy

    I have started to write everything down regardless of what the immunologist is telling me. What he says kind of makes sense however, because of the way my sister is I am on my guard for reactions to other things.

    I have had a PM from one guy whose symptoms seem to be almost the same as mine. It seems his immunologists thinking is along the same lines as mine.

    I have no intention of letting them off the hook that easily though so....................we shall see.

  • In this allergy world it is best to be your own detective as no one except you can decide what to put in your mouth BUT once you have found the root cause do let your GP know so placing it on your records and hopefully avoid giving you something your body does not want.

    A woman recently died form having been given penicillin even though she had a bracelet on saying she was allergic and it was on her notes. Allergies are worrying. I can't have gluten, dairy, alcohol, herbs, spices, salicylates, and so on. I am worried if I need any medication and have been proved medcially to be unable to take any antiarthritis drugs and I have RA and OA. plus plus

  • Hi wolfy

    I used to have these episodes from the mid80s up to about 9 years ago when I finally worked out what I was allergic too. The first time my lips swelled, subsequently it also included my tongue and uvula which was very scary as it was difficult to breathe. The latter episodes were characterised by swelling and blisters on my fingers and some sides in my upper body.

    I had allergy tests but it's like looking for a needle in a haystack. I finally worked out the cuLprit in my case and have managed to avoid any further episodes. My advice would be to keep a diary of what you've ingested on each occasion, in addition t pursuing the other investigations

    Let us know how you get on

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