I had a hospital appointment today with a view to have some scratch/patch testing to try and figure out what I'm reacting to, but was told that I couldn't have it done because I would have to stop my allergy meds and some of my asthma meds and they thought it was too risky.I just couldn't help but appreciate the irony! In the end I had a blood sample taken for RAST testing (testing for dog, cat, dust mite and a bunch of pollen allergies) so we'll just have to wait and see what that throws up.
The consultant also confirmed that my skin problems are definately atopic eczema but not before gently running a biro in its ""off"" position over my skin to see if it would go red, which it did. She drew a noughts and crosses board on my arm using my immune response! Anyway I now have a prescription for some very potent anti-inflammatory creams, but still no advances on the asthma control front.
Speaking about asthma control, after finishing my second pred course in a month, I'm back to being unable shower without having some kind of attack, fortunately most are mild and respond to ventolin reasonably well...eventually, but it's so draining and my chest is so painful from all the coughing. After starting a low sulphite diet, I have discovered that I'm now reacting to certain food colourings as well, after looking them up I found out that they have a known ""histamine freeing effect"" and that they are salicylates; now I'm worried about taking pain relief as normally I'd use an NSAID such as ibuprofen or diclofenac (which I have on repeat) but don't think I should now incase I'm allergic to salicylates and therefore aspirin and NSAIDs. Paracetamol doesn't even take the edge off so that's pretty useless.
Last time I saw a GP (it was one of the rare cases when it wasn't my own) I was told that adding a as my peak flows/lung function are very good theophylline won't help me because it's a bronchodilator and my airways don't need opening up any more but my problem is the underlying inflammation. Since then I've found a few studies some in asthma and others in COPD that conclude theophylline does have an effect on airway inflammation, but the studies were small and I can't find any follow up studies.
Has anyone else been refused theophylline for this reason? Is it worth talking this through with my own GP and seeing what she says or should I just accept no for an answer? Also has anyone else been told that scratch testing is unsuitable for them?
Wow that post was much longer than I thought it would be, it was intended to be a quick one too! ....also a bit moanier than I'd hoped. Sorry! I'll have to post a joke later to balance it out! =P
When I have had skin prick testing they have just wanted you off antihistamines and oral steroids. Did they want you to stop the montelukast, as I have never had to do that?
My old chest consultant said that you 'have to pick your allergist carefully'! I think what he meant was that allergy specialists can be either dermatologists, immunologists or allergy specialists. I would guess from your description that you saw a dermatologist. It might be worth asking your GP if there is someone else more appropriate for you to see. I went to St Mary's (in London) where they have a specific Chest and Allergy clinic. (There are probably other good people- someone else on here might know of someone closer). In the meantime try and keep a detailed symptom diary.
I take theophylline and my lung can be almost normal (not sure what it would be without though!). Have you asked your GP whether it is worth a 3 month trial, or whether they think it would be better to see a chest consultant?
In terms of salicylates in food, aren't there much smaller quantities in food than in NSAID? I definitely react to just a single ibuprofen tablet or even topical creams. What does your GP say?
Hope my ramble helps a bit.
Bryony
Thanks Bryony. It was indeed a dermatologist I saw, I was told I would have to stop the montelukast along with my 2 different antihistamines. She then went on to say that I couldn't have it done, didn't ask me how I felt about it, just said no.
I'll try asking my own GP about a trial of theophylline, seeing a different allergist and whether it's time for a referal to a chest physician. I'll also ask about the salicylate thing, hopefully it's the histamine freeing effect rather than a salicylate allergy, as like you say salicylates are found in much lower levels in foods, but I don't want to risk NSAIDs untill I have the all clear really.
My experience is that GPs don't seem to agree on much past step 2 asthma (before it gets near severe). I decided some time ago that I'd only deal with one, except in emergencies. It might be worth a chat with your usual doctor. Also, if your worried about the creams it might be worth chatting about those too.
If it helps, I've been using moderate steroid creams for a couple of years now, with no nasty effects. I guess we're all different but there are standard things that doctors look for if someone uses them long-term.
I'm allergic to ibuprofen. I can take one a day for a 2 or 3 days and no more, when my asthma is calm. Makes me wheezy.
If it helps, I've been using fairly strong steroid creams for a couple of years without any major issues. If your worried about it, have a chat with your GP. The GP can tell you what to watch out for. PM me if I can help.
Good luck with getting the trial.
Thanks TS, I'm not too worried about the steroid cream, although I'm not entirely sure my eczema is bad enough to warrant such a potent cream. That said I would rather put a potent steroid on for a few days rather than use a weaker one for weeks on end. I was given another cream at the same time which I'm not so sure on called Elidel, which I'm meant to use in preference over the steroid cream. Really Im just disappointed that I'm not having the scratch test, I wasn't really asked how I felt about it, just told no. I was really hoping for some kind of clue as to why my asthma's been such a pain in the rear recently, I guess the RAST test might still help, but they've only tested for a few things and I'm fairly sure I can predict the outcome of those, really I was desperate for some NEW information from the allergy tests.
Is a scratch test the same as a skin-prick test? If so, then yes, I couldn't have that done because of the meds I need, so I had my allergy testing done through a blood test. It still tested quite a few things, though I knew the things I was allergic too, but good to have confirmation. I'm allergic to aspirin and NSAIDs, I would think that if you are, you would know about it? With me I have a delayed reaction but it's very severe, so obvious something's going on.
Thanks Ratty, I'm pretty sure the scratch test is the same as the skin prick test, I left that appointment confused by a number of things so it's kind of reassuring to know that other people have been refused the test too.
As for the salicylate thing I can't be certain because since Xmas my lungs have been very grumpy and have been reacting to things that up until recently I've been fine with. I probably am being over cautious, but I don't think it's a risk I'm willing to take.
Update
I've been to the doctors again today and although it was the same GP I saw last time andnot the one I normally see, I am now going to see a respiratory specialist in March, and I'm on a trial of theophylline (fingers, toes, arms legs and anything else I can think of are firmly crossed that it'll work).
I'm also reassured that I'm not losing the plot, as the GP was just as confused as I am about the things the dermatologist prescribed and the instructions she gave me.
When my asthma suddenly got worse, my husband found a lot of information online about shower heads and breathing difficulties. I can't remember whether it was bacterial or mould growth, but at the time he took our shower hose apart and gave it a thorough clean. Didn't solve my asthma problems, but it might be worth checking this out and maybe replacing your shower head and hose.
Best Wishes
Thanks for the info valj, I've just read a few articles about it. Apparently its Mycobacterium avium which is related to the bacterium that causes tuberculosis but it's much less pathogenic and only really a problem in immunosupression. The article went on to say that the bacteria doesn't grow very well in metal showerheads (which we've upstairs for around 9 months) and numbers aren't significant in showerheads less than 6 months old, the shower in the downstairs wetroom was replaced around 3 months ago so I don't think thats the cause, but after reading the article I may end up buying a metal head for the downstairs shower anyway.
Nimueh, the scratch test is the same as the skin prick test, yes, and I am also too allergic to too many things to have them done these days, so my immunologist did the RAST tests. I'm pretty certain that they can test for anything with RASTs so if there's something specific you want to be tested for then it'd be worth contacting the clinic again. I'd urge you to do this regarding salycilates, as they are found in many foods (as well as medications) and it's never a good idea to exclude swathes of foods without medical input/advice, especially if it turns out to be unnecessary. It's also worth noting that not all food colourings are salycilates, so again it may not be these that you're reacting to. I'm allergic to the azo colourings and preservatives, which excludes numerous foods from my diet, medications that I can take, and cosmetic/soap products I can use. I'm thus far okay with salycilates, but my immunologist advised me to 'go easy on them' (without excluding them entirely) as I'm so atopic that I could become severely allergic to them at any point. There is no way that I could have got my head around all that I'm allergic to (and it took a while for the immunologist to work it all out), or have coped with the change in lifestyle without the medical input, and the dietician follow-up. As I say, please don't exclude things from your diet on without first speaking with your doctor and getting tested properly, not unless you're absolutely certain that these are what you're reacting to (and it doesn't sound as though you are absolutely certain), and if you are absolutely certain then you definitely need to have it confirmed.
I'm quite relieved to hear that you've since got an appointment with an asthma specialist. It doesn't sound as though your asthma is very well controlled, and certainly a consultant will have more means and expertise to try to get things under control for you. I'm also pleased to read that you've been started on a trial of theophylline. I have to say that I didn't understand your doctor's reasoning for not trying it, so good luck with giving it a go now that you've got it.
Sorry if this is a bit of a ramble and incoherent. I'm not at my best right now.
Becky.
Thanks BeckyG, you've given me a lot to think about. I haven't excluded anything from my diet other than reducing my sulphite intake, my GP knows about my low sulphite diet and is happy for me to be on it as anything that has sulphites labelled on the packaging is guaranteed to make me poorly. To be honest a lot of the things I'm no longer eating are processed foods anyway so it's probably actually improved my diet! I was told that sulphite allergy is difficult to confirm and there's debate as to whether it's an allergen or an irritant, with the only way to properly confirm or disprove it being an oral challenge (which doesn't sound fun at all) I think I'd rather just give up junk food and wine.
I'm not excluding food groups or colourings, just avoiding any individual foods that bring on symptoms, frankly if I've eaten or drank something that caused an attack it doesn't exactly appeal anymore. The drink that got me worried about salicylates was Irn-Bru which has sunset yellow (E110) and ponceau 4R (E124) which I believe are both azo dyes, and the app on my phone (okay not necessarily a very reliable resource but it's been accurate enough in the past) claims these particular ones are salicylates too. It only takes a sip or two to start a reaction so I definitely won't be drinking it anymore.
My asthma is not well controlled at the moment I'm not constantly out of breath but I seem to have so many triggers that I need to take my reliever regularly throughout the day in order to have any hope of accomplishing anything.
In all honesty, I wonder if its all my own fault for not listening to my body over Xmas and spending a day in a room full of chain smokers. I should have just left, but felt impolite so instead I ended up taking more and more reliever and then having to start my pred. I haven't been right since, but it's a mistake I won't ever be making again.
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