Idiopathic anaphylaxis

[estelletd]

Interested to hear you have the same. Funnily enough you think you'll never get used to it but life is pretty much back to normal for me - I've got two young children so I have to get on with it. I'm on Cetirizine, Sodium cromoglycate, ranitidine, prednisalone, fosamax and carry two epi-pens. They're looking for mastocytosis in my bone marrow and lungs but the doctors don't expect to find anything. At first I was desperate for some sort of diagnosis but now I'm getting fussy - I don't want a nasty one!

It would help to compare notes. I'm in the UK so treatment and drugs are likely to differ.

[PhilosophyCat]

I'm certainly up for comparing notes. I don't know anyone else with this, so I'm a bit at sea. (My name is Elizabeth, by the way, and I live in DC).

Glad to hear you're back to (relative) normality. I know what you mean, now -- I had my last anaphylactic episode about a week ago, and was still a bit shaken when I wrote the last post. I'm already more cavalier about the whole thing.

What symptoms did you have? I didn't have respiratory either -- hives, general swelling, gastrointestinal, rapidly dropping blood pressure, near fainting, tongue swelling.

Right now, I just take benadryl and ranitidine when I feel a bit of an itch, and carry two epi-pens. After an episode, they give me prednisone for a few days. I'm on nothing prophylactic. Since mine were less frequent than yours (a year apart), I don't imagine they'll want to put me on anything. I'm going to the allergist again tomorrow for a follow-up; we'll see what he says. I'm reluctant to take prophylactic drugs if I don't have to...

My allergist didn't seem to think scratch tests or anything but a careful history could determine the cause. What did yours say about this? I still can't get my head around the fact that my body will just do this every so often, and there's no way to figure out what's causing it.

I hope your further tests turn out for the best!

[estelletd]

Elizabeth, glad to hear you're feeling a bit more confident - it's so horrible in the first weeks and days after the attck. I was in hospital 3 weeks after the second big attack and part of me never wanted to go home again!

It sounds like we have similar symptoms. My first two ended up with me losing conciousness and get this - bowel incontinence. Not the most pleasant experience! My blood pressure was so low they were considering ITU. Do you get any gastro intestinal symptoms? The second one I had was really bad - I had morphine for the pain.

I don't blame you for not wanting to take the drugs regularly but if you do ending up have to at least I can tell you at the moment they're working for me. Even if I have another attack I know it won't be so bad.

If you go onto the PubMed website and put in idiopathic anaphylaxis there are some good articles. Most people seem to relapse eventually, with or without steroids and the good news is fatalities seem to be very rare.

I've found it helps me just to get organised. I've got two kids 5 and 2 so all the neighbours know what to do if it happens. I bore everyone I meet about how to use an epi-pen - it can't hurt them to know anyway! I wear a medic alert bracelet as well. I was going to start to try for another child but that's on hold for now. I'm practising counting my blessings.

Anyway hope your allergist is good. My immunologist is very good, understanding how difficult it is even though he doesn't have any answers.

Good to hear from you, Estelle

[PhilosophyCat]

Hi Estelle,

So I went to the allergist today, and I'm going on Cetirizine prophylactically. He's also ordering up a bunch of tests: liver, thyroid, metabolic to rule out any odd auto-immune goings-on (other than the anaphylaxis itself, I suppose). Going to do food scratch tests, although he expects nothing will show up -- I didn't eat anything strange either time.

It sounds like we do have similar symptoms, although yours are much more severe than mine. I only lost consciousness for about a minute, and both times I was out of the hospital after just staying overnight. Your blood pressure went lower than mine, too, it sounds like. I did have bowel incontinence (bleah) and I also get nausea and dry heaves when my blood pressure starts dropping. The ER doc chided me for not using the epi-pen earlier. I thought it should only be when my throat is closing up (which hasn't really happened) -- he said to do it when the blood pressure starts to drop.

Three weeks! My goodness! That's awful!

I've gathered that fatalities are rare, but that's hard to remember when the hives are popping up! I'll check out PubMed though, thanks. Everything I've read has been either too simplistic or too technical.

It sounds like you're very organized and coping well. I admire you, what with two small children! My husband knows what to do, as do some people at work.

I was thinking of trying for a child, too. It would be my first. I didn't bring it up today with the allergist, but I plan on it soon. That was part of my reason for being reluctant to try the prophylactic drugs. Did you talk to your immunologist about this? Will it be a problem if you do decide to have another child?

Thanks for chatting about this! It helps!

[estelletd]

Hi Elizabeth,

I did talk to my immunologist about babies a bit. I've decided in my own mind not to even think about this year. I'm 36 so I've got a few years in me yet!

He said definately not whilst on the bone protecting drugs that go with the steroids. The other drugs are not indicated in pregnancy either but to be honest nothing but paracetamol is. Once you get pregnant your medical needs seem to be irrelevant to the medical profession! I would look into the drugs and if they're just 'not tested' I would risk it. The real risk I think is having anaphylaxis while pregnant or heaven forbid, in labour. BUT it must happen all the time and if your epi-pen works I guess you just have to go for it and keep fingers crossed. I think that the drop in blood pressure is the biggy for the babies health.

If I was you I would go for it. Having kids is by far and away the most fantastic thing I have ever done. It gives me great joy and happiness everyday. If there's one thing I've learnt since having these attacks is that you must enjoy all the little moments which I think life is all about. Sounds really cheesy I know (especially for a British person!) - but how esle can I explain that I've never been happier than in the last few months. Must be the steroids!

Hope to hear from you soon

Estelle (attack free for 1 month now!)