Drug Allergies

[Someonesmother]

Does anyone else have huge issues with medications and allergies and adverse reactions? As I haven't started treatment yet as they are 'scared' of my reactions, I would like to go armed with as much info as I can so I am not another sausage in the sausage factory.

[Hidden]

Morning! (Though obviously it isn't in Australia .) Just wondering which medications you've reacted to so far? x

[Someonesmother]

Morning to you, most antibiotics I am down to 1 that I can use that is an injection, opiate based pain killers like morphine, endone, codeine, nasaids and who knows what else as I have only found most of these out int he past year apart from the antibiotics which I have had problems with for about 20 years. I never got sick much until a year ago so never had to take anything.

[Hidden]

I know that what you need most is to hear from others who have specifically experienced allergies or reactions & I haven't.

However I used to consider myself quite sensitive to drugs, for example one Nurofen would have me spaced out all day long (quite pleasantly so!). I was therefore quite worried about starting Methotrexate as it is far & away the most powerful drug I've ever taken. But have been amazed at how well I seem to tolerate it. I've been on the maximum dose of 25 mg for quite a while. Beginning to think it is starting to give me a bit of a hangover for a few days but that's all. x

[Someonesmother]

Rheumy has looked at my long list and told me they are really worried about what to give me. I also have bad liver results waiting to have a liver biopsy but that could take a year or so thru public health and I am not waiting another year to get some relief. I have had such a bad day I could not get out of bed today and slept for a few hours, thank heavens it is Saturday so I could. I also have lots of food allergies it just seems my body has gone in to melt down and I have nearly died a few times in the past year from reactions to meds so as you can imagine I am a bit apprehensive to start such toxic drugs. I had a bad reaction to prednisone recently and stopped it, bizarrely I have had that before a couple of times and no reaction so I have very few options left now.

[earthwitch]

Building up doses much slower can help avoid some reactions. I've heard of folk pre-medicating with antihistamines as well before taking something new. I would have thought that the biologics would have far less potential for reactions (though even those can be problematic not because of the active ingredient, but the other things in the injection solution or even the packaging of the injection.)

I think the secret is probably to actually have you in hospital, or at least in some kind of day stay clinic under nurse supervision when you start taking something new.

I wondered about codeine allergy myself just recently, and like you, seemed to be getting more and more sensitive to a whole lot of things, although I haven't ever had an anaphylactic reaction. In the end I realised that I had limited myself so much, particularly with foods that it was becoming a misery. I did discover a theory that suggested that if you rotate your foods a lot more and don't rely on the same ones all the time, that you can extend your diet a lot. Problematic foods can often be taken about once every four days or so, and as long as you keep on increasing the variety, and having things regularly but not too often, it can work. With the codeine, I was very concerned because I would often have a serious itching reaction, but actually have discovered thats not a true allergy - its merely the codeine doing something that triggers a mast cell reaction, and its something thats easily dealt with by taking a once a day antihistamine.

I guess what I am saying is that maybe you could do a combination of things - make sure you are safe with adequate supervision when you take something new; ask about taking either regular antihistamines or taking them before new meds; investigate some of the food allergy and food sensitivity desensitisation programmes a bit; discuss biologics with your rheumtologist; allow your body a lot longer to get used to new meds by starting at much much smaller doses and only building them up very slowly - but any or all of these things in conjunction with good medical advice.

Also if you haven't already done it, and have had an anaphylactic reaction, then ask to have full allergy testing from a consultant immunologist so you know for sure what you are allergic too, and what you have another form of sensitivity reaction too. I couldn't actually get that testing even though I was referred for it, because they were only doing it for children or adults with anaphylaxis problems (shortage of immunologists).

[Someonesmother]

Thanks Earthwitch. Unfortunately here they seem to just prescribe it send you off to fill out the script and leave you to it.I wonder how I will be able to go to work feeling even more like death than I do now. Even when I had the reaction recently to prednisone and I called to tell them the PA forgot to tell the rheumy and 3 weeks later he called to see how I was 'going'. So no aftercare per se in Australia. I am quite freaked out as you can imagine and if you go to A&E unless you are actually dying the wait is about 18=24 hours to get past reception. So you can see my dilemma.My GP is fantastic but obviously not there 24/7 so I am feeling like I will be left to deal with this by myself. I just end up being vomiting uncontrollably so far with opiates and once tried temazapan to try and sleep and had what my GP called a paradoxical reaction where it kept me up all night and I was literally buzzing, not quite the desired effect!

[Dogrose]

There is a difference between an allergy and a reaction to the chemical in a drug. An allergy is an immune system reaction to a protein, so really you cannot be allergic to something like aspirin, which is an acid not a protein. You can be allergic to the proteins in a biologic treatment but most drugs aren't proteins.

I get a reaction to several drugs - I can't take any NSAIDs as aspirin makes me wheezy, hydroxychloroquine made me very wheezy and altered my perception of reality, I've just started taking omeprazole and feel slightly wheezy shortly after taking it but it wears off. I always worry about taking something new, when I start Infliximab next week I will be given Piriton which is worrying me as I've never taken it and hope I don't have a reaction to that too! XXX

[Someonesmother]

I can understand your hesitation Dogrose I have both allergies and reactions to drugs depending on what they are. some reactions have nearly killed me. I don't take asprin or ibuprofin I only take panadol osteo it is about all I can stomach. All the others cause intense gastric reflux as I have a hiatus hernia and GORD.I don't take NASAIDs as they cause incredible acid reflux and my stomach burns, last time I took them it was eating the lining of my stomach even when taken with food. I don't know what the drugs you refer to are as my rheumy hasn't put me on anything yet. I just wondered how you coped, do they monitor you when you start them in hospital or do they just give you a script and hope for the best.

[Hidden]

I have similar problems in microcosm to you. I have always suffered from allergies and spent half my life on either topical steroids or systemic ones. I now don't seem to have allergic reactions to things - something very useful happened around the time my menopause started I think but haven't a clue what! But I do have reactions and am always very apprehensive about starting new drugs now - I seem to be piling through them but have stuck it out with Methotrexate (injectable) JUST, because none of my reactions have been a serious risk to my health (only my sanity!) since I had to come off Sulphasalazine - to which I reacted unsafely. I've managed Hydroxichloraquine and Methotrexate without anything too awful happening to me over the past 18 months.

I can't take Prednisolone or any steroids now without becoming bipolar so I'm very relieved that Methotrexate has successfully dampened my RA to a high degree - but I'm now reluctantly dropping doses because the side effects are impacting too much on my quality of life. If I had very aggressive/ erosive RA I would put up with these side effects but as I don't, then I'd rather put up with a degree of pain. It's all such a balancing act and I really feel for you. The worst is being made to feel useless for not tolerating the drugs well but I could never get up to Luce's level of MTX absorption in my wildest dreams because my body would just totally freak out. It's just how I've been made - blond (fair skinned)and ridiculously over sensitive to certain foods, chemicals and animals and now to important drugs as well.

It really is annoying - not only are our immune systems overactive and idiotic but we end up feeling somehow guilty for this - or at least I do. Have you thought of trying to do this through some type of allergy center I wonder? If you could only try things in a controlled and monitored environment I feel sure that some would work for you and you wouldn't feel so alone. I think it's probably good that your consultant is not rushing in as all these drugs are not only potentially toxic but also they are slow acting and slow to get out of the system too so he or she does need to think very hard about how best to treat you. Good luck. Tilda x

[Someonesmother]

Thanks Tilda I think you have hit the nail on the head I don't want to b e given these drugs and then let loose ion the world with no support. I could die at home and no one would know. It freaks me out so much and yes I agree they stay in your system for a long time and the effects just keep on giving! My other worry is how I will keep working while under the influence of them if they have adverse impacts like nausea etc.

[beauty96]

I can't have any painkillers etc so rely on my Tai chi that I teach and also massages. Could try complementary medicine. I studied for my IFA in Brisbane so know ther are a lot of qualified people in Aus. IAAMA it is now called and available on most insurance plans. Hope this helps. I am in the UK but still belong to the Aus branch. I have wrtten some articles in Aromatherapy Today about all this and it is published in Aus. Sending love

[Someonesmother]

Thanks Skeggy. I hate massages can't stand anyone touching me it hurts too much and I don't have the money to spend on alternative medicines. Good for those that can afford it though.