For years I’ve been trying to get a referral for immunotherapy for my hay fever and dust mite allergy but have been told that it’s not available, that I wouldn’t qualify because I have asthma etc. etc.
OK… but my dust allergy causes most of my asthma problems in the first place, if it was treated I might be able to throw away the asthma medication… I’m pretty sure hay fever affects my breathing too.
Where can you get immunotherapy?
A friend told me that the best place to obtain immunotherapy is either The Royal National Throat Nose and Ear Hospital (RNTNE) or Guys Hospital. They offer either injections (SCIT), or SLIT (sub-lingual drops or tabs) depending on patient preference. SCIT requires visits to the hospital, SLIT is done at home. Both seem to work well in practice. It seems that getting a referral for any immunotherapy is the tricky part. I’m up for the challenge though.
Guy’s and St Thomas Hospital state that you would need to stop taking asthma and allergy medication during treatment so this could be the reason having asthma prevents immunotherapy being viable.
Anyone who takes two puffs morning and night of the brown inhaler could easily come unstuck if they stopped doing so, especially if they were taking immunotherapy treatment at the same time, which can also trigger asthma reactions.
Imagine not being able to take your inhalers OR anti-histamines for the duration of your immunotherapy treatment, which could take months of years to complete?
Immunotherapy IS safe with asthma
However a quick google research led me to this paper from some research in China entitled “Evaluation of the efficacy and safety of standardized dust mite allergen specific immunotherapy to children with allergic asthma.” which concluded that,
The standardised dust mite allergen specific immunotherapy is efficacious and safe to children with allergic asthma. SIT can reduce house dust mites skin sensitivity and prevent new allergens appearing.
So it seems that it is possible… and I KNOW it is possible because my own sister had grazax grass immunotherapy about five years ago when she was in her thirties and it was a complete success. I would say her asthma has always been worse than mine. So why, in Enfield, can you get immunotherapy? but in wealthy Bucks you cannot?
It is a postcode lottery and treatment seems to be not that important in the Health Service.
Why don’t we have ‘allergy shots’ like other countries?
I know that in Europe and America people with allergies get their ‘allergy shots’ for anything from dust mite allergy, tree pollen and grass to animal hair and dander allergies. Immunotherapy was invented in this country so why is it so hard to get this treatment? Even finding a private consultancy seems impossible.
Talking to a friend the other day about this we discussed that because my life isn’t immediately threatened by this condition there is no need to treat it. They prescribe me lethal horse tranquiliser anti-histamines and an adrenalin auto-injector and that is all I’m going to get.
I am perfectly able to live with it, cope with it, put up with it, rage about it, ponder the injustice of it.
I understand why it has to be like this, but my life, right now, is getting very badly affected by these damned allergies. It’s not just air borne it’s food allergies too. If I had Michael Jackson’s money I would be much healthier in living in an oxygen bubble with special chefs to cater to my every allergy restricted whim.
As I sit here now my face is a raging angry swollen demon. It is not me I see in the mirror. My thoughts at not my own. It is as if the allergy takes over my brain and turns me into a nasty, mean, grumpy, lazy, bored, unproductive and venomous being. This is not me.
Having immunotherapy could literally change my life. I crave an outdoor life but at certain times of the year I dread even going outside because the pollen not only wrecks my eyes and blocks my nose, it also lands on my face and burns my skin.
Of course this could be a combination of airborne allergens and something I ate.
Either way I’m fed up of being me and grateful I don’t really have to be anywhere important this week because I HATE going out when I look like this. Don’t make me angry today. I’m warning you!
Right, where were we? Rant over. Can you have immunotherapy if you have asthma? Ask my doctor and the answer is NO. I am NOT taking NO for an answer any more… if I have to find this treatment privately I’m doing this but what would my general health be like if I stopped taking my asthma medication? I could be at risk from severe anaphylaxis, made more dangerous if asthma is not under control…
Anyone had immunotherapy who also has asthma? Did it work? Was your asthma manageable?
I really feel for you today. I’ve been know to give Joseph Merrick a run for his money on some days. The sheer injustice of allergies and the way they’re treated (or not) makes my blood boil. When I look at all the other long-term illnesses or conditions which qualifies a person for, at the very least, their medication for free I get angrier. And I’m not knocking those people or their illnesses at all, but who decided that insulin-dependent diabetes is worse than a life-threatening allergy which requires adrenaline?? Or that asthma is less of a threat than being pregnant? There’s a massive disparity between how other serious conditions are viewed and how allergies are viewed.
I know, I normally get on with my life without worrying about useless doctors who cannot really help but I keep hearing people who have found help. Why can’t I get any? Why am I less important? I’m getting really tired of living like this, cooking every meal, never going out, looking like this picture above if I do eat out, facing the ignorance of other people who think this is all in my head. I think i am fairly reeling after reading a really nasty article from The Spectator written by a rather nasty little man called Rob Liddle. It comes with a health warning. Will make your blood boil.
Please don’t feel alone in all of this Ruth. There are a lot of people out there who feel for you and understand where you are coming from.
I too have read the article by Rob Liddle and to be honest I think you are rather restrained in only calling him a ‘rather nasty little man’. I would never wish anything on anyone but sometimes you do think that all things being equal he would develop an allergy or intolerance to something. He would then find out exactly how offensive he is. There I said it!
I try to believe that one day the tables will turn, the wind will change and people will come to realise that the way modern society is is making people sick and then perhaps they will make the effort to do something about it. But, perhaps that is another topic!
Hold on in there Ruth, you are not alone.
Hi Mindie, thanks for the kind comments and don’t get me started on Rod Liddle. I wish him coeliac disease, eczema and allergies. Not just one allergy. You are right and now I’ve said it too! The man would not know what to do and would probably be in denial that anything was wrong. I’ve met people at Allergy Support groups who didn’t believe allergies were real till their kid got an allergy. It was really interesting speaking to them about it, they had to eat humble pie and probably risked their child’s lives by testing and pushing the boundaries, refusing to accept that the allergy was real. All we can do is help build awareness, understanding and share empathy for anyone with a condition which limits their lives in any way. And I completely agree, I really think our western diets are at the root of many many illnesses but sadly diet and lifestyle are overlooked by doctors, they treat symptoms rather than seeing the body as a machine which needs exercise, good food etc.
Miss Diagnoses says
You look like me when my rosacea and allergic contact dermatitis were at their worst. Is your face like that all day, or does it get worse with heat, cold, after dinner, etc.? Did your dermatologist rule out these two conditions? I think I commented on another post, but I am writing again here because your skin looks so much like mine did … it’s shocking.
If you google “rosacea forum” there are some helpful people on there (also some not-so-helpful people).
Hi Miss Diagnoses, I have spoken to the doctor about Rosacea and he doesn’t think it’s that. My skin sometimes looks OK when I get up, and then when I get up it gets worse and worse throughout the day. This time I think I know what caused it. I had fried egg for breakfast on Sunday and it has flared up again. Eggs seems to be a common food. I am usually OK with eggs but I wonder if the fact my hay fever is so bad right now means my body just cannot cope with eggs. I used to be very allergic to eggs but grew out of that one slowly. Staying off the eggs for a bit to see if that is it. All very complicated this. I will take a look at the rosacea forum though, doctors are not always right about these things… but my skin does seem to flare up because of food triggers.
Miss Diagnoses says
Ha, no, that is actually a hallmark of rosacea–it flares with certain foods. Actually I should say that is hallmark of some types of rosacea because there are different types. I’m glad that your patch test came out negative though. I cut my rosacea about 50 percent when I gave up dairy and gluten. Here is a list of triggers. http://www.rosacea.org/patients/materials/triggers.php It doesn’t say eggs, but it does say “foods high in histamine,” so if I am not mistaken, that includes eggs. The reason I thought “rosacea” was that you have redness across the cheeks, not much on your nose and a bit on the forehead. General doctors often don’t understand rosacea — you have to go to a good dermatologist if you haven’t already done that. Good luck!
Well that website is talking to me. It IS ME! My dermatologist has never mentioned rosacea. I asked my GP about it years ago when a lady suggested I might have it but he said, no, definitely not. But to be honest, when I see the dermatologist or doctor I generally haven’t got this reaction. I just don’t bother them with it because they can never really offer much in the way of help or advice. It goes down of its own accord usually but it can take days to subside. I’m going out to an awards dinner tomorrow so will have to try to mask this with concealer and makeup… oh the joy. I am going to read up on Rosacea now and take some stuff for the dermatologist to read. If it is Rosacea I doubt the protopic will help much.
Miss Diagnoses says
Glad it was helpful! If you go on the rosacea forum there is a section called “diets, lifestyle, and relationships,” or something to that effect, and a lof of people talk about their food triggers. Most people find that eating the wrong foods will cause a flare. There is also a different subtype of rosacea caused by a skin mite, but that’s a whole other thing.
If you have rosacea, there are a lof of skin medications for it, and it sometimes takes a while to find the right one. But I’m glad you only have this some of the time and you don’t have permanent redness.
Thankfully no, it’s only due to food but often I don’t know what food caused it so perhaps this list on the forum might help me. I also get really awful swollen eyes, lots of gum clogging up my eyes and constant watering eyes, particularly one eye. this sounds so like me it would be crazy not to find out more. Thanks so much for sharing.
Miss Diagnoses says
You’re welcome! Here is a link for some threads on ocular rosacea. There are four types of rosacea : 1) redness and flushing 2) redness, flushing and pimples 3) phymatous (think Bill Clinton’s nose) 4) ocular. If you are in the UK there is a famous dermatologist in London called Dr. Tony Chu … I am American and I only wish I could see this guy. Oh well. Good luck.
Ocular rosacea threads:
I urge you to try the Homeopathic Hayfever Desensitisation course from my website http://www.allergybestbuys.co.uk. I know it’s tempting fate to say this, but it has worked for everyone who’s followed the course and the 12 year old who was our tester has never suffered so much as an itchy eye since completing the course. He is now is now 18.
You basically take drops of pollens under the tongue starting as soon as the tree pollens begin to shed – ie NOW! – and your body gradually gets used to it and stops reacting with the symptoms of allergy. Best wishes.
Ruth Holroyd says
Gosh only just seem this comment, but I love your website. I’ll give it a look as my health goals now are to heal naturally..
I have severe allergich asthma and I do have immunotherapy for pollen en mite, but started with Xolair first. When I was strong enough we combined the two. Xolair to keep me healthy enough to do the immunotherapy.
Did you try to find information about the treatment you want on linkedin, see what others can teel you about it?
Thanks for sharing Fleur. Love that name 😉 Well I knew my doctor was fibbing me. Both my doctor and the ‘specialist’ dermatologist who I see for eczema and my allergies has told me I can’t have immunotherapy for dust allergy or any allergy because of my asthma. This never made sense to me since the allergies give the asthma. Go figure that one out. I have heard of xolair and have met a few people who have had it. My asthma is normally pretty well under control, unless I go anywhere near DUST or CATS or DOGS or animal hair of any kind and then I’m streaming and wheezing. I am better than I was as a kid. So it is possible. I will research this. I don’t like being fobbed off just because I live in Bucks where there is NO money in the NHS for anything.
I have exactly the same symptoms as you describe. Two days ago I had a terrible flare up. It began after dinner. My face began to tingle, and in an hour my eyes became puffy en red. The next day I woke up and thought it was gone, but after washing my face it flared up again. My face hurts, its swollen/warm and very red.
I think it has to do with the cats of my mother, or mushrooms and lemon. (The last time I had a flare up I ate mushrooms and drank lemon juice.)
My doctor said it MAY be rosacea and gave me Metronidazol. But he’s not sure.. I asked him multiple times to do a blood test, but he said the results are not reliable.
I also have the negative feelings as you desribe when Im having a flare up.. It makes me very depressed. For now I’m also going to try the ”rosacea diet’.
Ask your doctor about Protopic. I discovered it about 6 months ago and it has literally cured my facial flushing. Search for the blogs I have written about it and demand you get a tube to try. It
is not expensive so no excuse for them to refuse it. A tube costs only £19 which is well worth the amazing improvement in quality of life. Good luck!
I used that years ago for eczema on my neck and fingers. How often do you use it on your face? And do you also have very dry skin?
I really want to try it! I’ll call my doctor tomorrow!
Hi B, you start off using it twice a day, morning and night, then once it’s reduced the flushing you can start to reduce the frequency you use it. Worked wonders for me.
Andrew Williams says
Certainly uncontrolled asthma is a contra-indication for immunotherapy. It would be foolish to initiate it in someone with uncontrolled asthma. Its to prevent severe acute life threatening asthma attacks.
In well controlled asthma it is still unwise to have immunotherapy due to the history of deaths in the UK in the 80s linked to asthmatics having immunotherapy.
So actually “unhelpful doctors” prefer people to be alive with hayfever than dead without.
Ruth Holroyd says
LOLS… yes you medical lot are so unhelpful. It just frustrates me that immunotherapy might help my asthma but I can’t have it because i have asthma. Sods law I guess. Thanks so much for the comment. Asthma is a serious condition so I understand we have to be very careful when trying things like this.