Keep taking the pills…

….. or in my case, and many other people’s cases, maybe not.  My friend Elizabeth Milo has had a thread on her Facebook page about drug allergies alongside a photo of the legion of pills she’s tried and had a bad reaction to, and she’s not alone.  I myself have had two dozen drug reactions that have scared me to such an extend that I’m now completely phobic about trying a new tablet, supplement, topical lotion or even herb.  While I’ve thankfully never had full on anaphylaxis, I have had a Grade 3 anaphylactic reaction which lasted for every second of three entire weeks, and took me another six months to get over.  When I react to drugs it isn’t just a case of feeling rough for a couple of hours and then getting back to normal.

When I first began my journey of looking into my reactions I could find virtually nothing online about total drug allergy.  Even within the Mastocytosis population there is a list of drugs you’re supposed to react to and a list which is supposed to be safe.  I couldn’t relate, because I react to everything.  Even things I’ve been told it’s impossible to react to, like B12 supplements, hops in a herbal teabag and all the drugs used to treat anaphylaxis like steroids and antihistamines.

For me, it’s been the worst aspect of having MCAD.  The look of utter disbelief on every doctor’s face I’ve ever encountered and the, sometimes not even veiled, suggestion that it’s impossible to be allergic to all drugs therefore my symptoms are psychosomatic and I probably should be in the therapist’s office rather than the allergic clinic has been a common experience.  Even Doctor Seneviratne, the leading MCAD Consultant in the UK, told me at my appointment that Sodium Chromoglycate is one of the safest drugs around and he was certain I wouldn’t react to it, yet I knew that many of my friends had tried it and it had made them horrendously ill.

Once I finally found the MCAD population online I discovered hundreds of people like me whose bodies have a particular love of reacting badly to drugs and supplements, and it was incredibly validating to know I wasn’t alone or bonkers which is how I’d felt for the previous 15 odd years.

I don’t know why Consultants find it so hard to get their heads around multiple drug allergies.  They accept you can react to just about every food or environmental stimulant known to man, but drugs………..ah, don’t be daft!  Sitting in a doctor’s office, telling them about your last horrendous drug reaction and being offered, you guessed it, yet another drug to try is soul destroying.  I know doctors can’t ‘fix’ me, but it would be nice to simply have my reactions recognized and taken seriously – after all, one day they could kill me.

They also can’t get their heads around the reactions not being dose dependent.  It’s widely known that people with, for example, a peanut allergy don’t need to eat an entire peanut to have anaphylaxis – just the mere trace of peanut oil will do the trick.  But doctors don’t seem to understand that this applies to drug allergies too.  I can have the same reaction to putting a tiny bit of paracetomol on the end of my tongue as I do to swallowing a whole pill, but will doctors accept this?  That would be a big fat no.  The reason they don’t accept it is that they don’t accept I’m having an allergic reaction, and my multiple drug allergies are down on my file as “multiple drug sensitivities“.  I am not sensitive, I am allergic and while I accept my MCAD reactions aren’t caused by an IgE reaction my anaphylaxis is nonetheless real – my allergies are allergies, they’re just triggered differently.

The lack of care for people with multiple drug allergies is scandalous.  If you are known to have anaphylaxis and are offered a new drug to try it should be done in hospital, under medical supervision – you absolutely should not be sent home, alone, to just get on with it.

How do we get the problem with total drug allergy through to Doctors?  I wish I knew.  And are any of our reactions being reported to drug companies or the authorities?  Hell no!  There are no figures being kept of our reactions to all these medications, which is another scandal.

I accept that MCAD is a newly emerging disease, however it’s been recognized for a decade now but it’s still not accepted by the World Health Organization or our Health Department.  When is this going to change?  When is the full extent of MCAD going to be realized and treated?  I’m sick and I’m impatient and my life may just depend on some recognition.

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6 thoughts on “Keep taking the pills…

  1. Glo

    I’m not as severe as you in reactions but totally understand the doctors reactions when you tell them something makes you sick. I broke out in hives from sublingual b 12 which I took because my dr doesn’t understand why I want to get a shot every month for my pernicious anemia. I get the shot because I don’t have a reaction to it. Yet almost every visit he will try to get me to take some other form. Please let me stick with what works for me. I have pernicious anemia and can’t absorb b12 thru my gut but he will also suggest massive oral doses. This is yet another disease he refuses to believe in. He and my dr that sees me for osteoporosis are also insisting i take a drug for this that makes me Ill it feels like my stomach is being eaten away. So I take nothing as they are unwilling to prescribe a hormone replacement that may help a
    little because I may have a reaction such as a clot or breast cancer. Can’t I just try? I don’t have prescription coverage so my options are limited. I get I’ll from vitamins and also calcium supplements. Who would believe it? Certainly not the doctors. Because what do we know about how we feel? I mean we aren’t doctors and we have this semi acknowledged thing and probably are just loopy. Great! Next year in the states it will be mandatory for people to have prescription coverage and I am hoping at that point I will be able to try more things and hopefully find one or 2 things that help. At this time can’t afford most of the drugs.

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    1. Jak Post author

      I hear you Glo. I can’t tolerate magnesium supplements, and even had to give up using Epsom Salts in my bath (which used to help enormously with my muscle pain). It’s crazy! I’m glad to hear prescription coverage is changing over there and hopefully you might then be able to get more meds to try. The one good thing about the NHS is that poor people aren’t descriminated against x

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  2. Elizabeth Milo

    Everything you said is so right on, especially feelings bonkers until you found others like you. I was made fun of for YEARS at work and with friends because I had reactions to things and a healthy dose of fear around new situations and substances. Always feeling like a freak and the butt of the joke because you have no diagnosis is not fun. Not to mention doctor disbelief.

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  3. chrissyc

    I had severe reaction to 5 b12 injections in April. Still suffering large amounts of hives daily ! Night sweats, swellings. Stopped all my prescription meds as I don’t trust any of them now. Wear medic alert bracelet due to penicillin allergy. Sure I have histamine intolerance as over the years my symptoms match fully and I guess the B12 sent mast cells into overload. Will it ever ease. I sure hope so. So worn out with no sleep. On B1 and B2 antihistamine as heartburn now ridiculous!! Grhhhh

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    1. Jak Post author

      Hi Chrissy

      You’re having a proper rough time – I really feel for you. Sounds like you have Mast Cell Activation Disorder, though, not Histamine Intolerance – they are two different disease with very different causes.

      I’ve had insomnia with my MCAD for 20 years now and have forgotten what it’s like to sleep through the night. Now I’m also in peri-menopause, well, you can imagine! I don’t think anyone realizes how dreadful not sleeping properly makes you feel.

      I really hope you can find something to ease your symptoms.
      Jak x

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      1. chrissycChrissy

        Definitely sounds like mcad. My gp did mention mast cell degranulation when he put me on H1 and H2 blockers at my insistence as I mentioned I felt it was all histamine related. Is there any point in trying to get a definitive answer as the treatment seems the same anyway, as well as following a low histamine diet. I was going to ask for a blood tryptase test when I get retested for b12 and vit d levels again in 6 weeks time. Also maybe a full blood count.?

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