Hi AllLooking for advice or perhaps just to know that I'm not alone and someone else found their way off this merry go round.
I'm a 59 year old Developer and was very keen on sport all my life. Both my grandfather's died of lung "disease" (I watched one taking his last breaths, horrible). My GP warned me off smoking because of the family history, so I never did and told me to keep fit, which I enjoyed a great deal.
I've always had allergies to animals but as I've gotten older these have got much worse. You may have guessed from my title we have horses. In allergy tests I'm a strong positive to cats and dogs but off the scale with horses, so my family are clinical in their approach to keeping horse dander from the house.
Problem is as I've gotten older I've either developed new allergies or they've gotten much worse so now effect me badly. I'm now very allergic to leaf mould and a variety of indoor mould. I'm also allergic to soil and grass pollen. As a builder its hard to avoid soil, in the summer it blows about site. However mould is a killer! Because I'm allergic to a variety of indoor mould the advice is to keep the house well ventilated but because of the leaf mould allergy I should keep the windows and vents shut. As our American cousins would say "go figure". On medical advice we even moved into the countryside for cleaner air, I think that really is the definition of irony (unlike the song). Due to all the inhaled steroids I now have a small sqeeky strangled sounding voice rather than the deep voice I used to have.
So I take Montelucast, Fexofenadine, Spiriva, Citrazine, Dymista, Symbicourt and lots of good old Salbutamol. Respiratory have now prescribed long term Azithromycin as they say in people like me it has had good results in dampening the immune system plus I get lots of chest infections.
They have recently decided that I'm depressed (I wonder why) and prescribed amitryptaline which they say also has be benefits for asthma patients.
I've had courses of oral steroids which do nothing for me. My immunology consultant wants me to try a course of biologics but respiratory won't entertain it. Without my local immunology department I think I would give up.
On a positive note I'm 60 next year so free prescriptions, yay.
Thanks for listening.
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Horsemadfamily
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Sometimes there's no rhyme or reason, especially when we make informed decisions about our lifestyles but things get worse, despite our best efforts.
I don't respond well to steroids and their effectiveness decreases as I get older (now 65). Montelukast did help me to a degree with my animal allergies, I love cats and horses. I gave up riding about 10 years ago though. Symbicort became ineffective for me and changing to Fostair was very helpful. Spiriva worked for about 8 weeks then it gave me high blood pressure, following research I went onto Eklira Genuair and it was very effective. Sometimes trying a different inhaler from the same stable (sorry) of meds can help (I stress sometimes).
Instead of oral steroids, I now will have Azithromycin which works much more effectively. My consultant explained that I have a phenotype that they know won't respond well to steroids but will respond well to Azithromycin. Though some of the GPs at my surgery do struggle with the concept of Azithromycin as an anti-inflammatory, despite the consultant's written advice being on record.
It may be worth asking your hospital team if they know of any trials of biologics, research teams are always looking for volunteers. One of our local research consultants tried to recruit me for such a trial during covid, but I declined. It sounds like you'd be an ideal candidate for biologics and it is disappointing that the respiratory team aren't on board. Have they explained why?
Thanks for your response. Like you Spiriva was effective for a couple of months Fexofenadine disappointingly a few weeks. I'm encouraged to hear that Azithromycin is working although I had the same experience with my GP. They won't consider me for biologics until I've been hospitalised at least twice and keep hinting very strongly that I go private. My allergies and asthma were a pre existing condition on my medical insurance so no cover. Although I can afford it my Immunology consultant has strongly advised me not to go the private route for several reasons.
So clinically you're suitable for biologics, if your respiratory consultant is suggesting private supply. Have a look at this link, it may help as it contains a link to a patient's leaflet to "empower patients to have an informed conversation with their hospital team". But the narrative of the page explains the need for the patient to be looked after by a severe asthma team. england.nhs.uk/aac/what-we-...
Thanks i will have a look. The immunology consultant has advised that I fit the criteria for biologics and written to respiratory but respiratory are determined to follow procedure and exhaust all other avenues. Its taken me 4 years of gradual decline to get where I am. I understand biologics are expensive but that misses the point that I was and still am (just) a highly productive member of society. I don't think that will last much longer which will cost society a lot more than a drug. But thats the system we have. Wait until someone is critical then intervene.
Immunology tried me on Oralvac Compact. Unfortunately I had a bad reaction to that and I now seem to be even more sensitive. That's now been stopped. They will wait until the Aspergillus season has ended then try again.
What strength fenofexadine ru on( there's 180mg + 120mg). I find thm helpful for rhinosinusitis,and I prefer loratidine over cetrizine.did u have allergy testing done privately? X
I'm the same age as you. I have always responded well to steroids. But I see Poobah also doesn't respond well to steroids.
After pestering my GP, I was referred to a chest consultant, and the chest consultant then referred to a regional team for assessment for biologics. They did quite a few tests. I didn't qualify for biologics. I was told four doses of steroid per year is the minimum. But I was put on Trimbow, which has helped considerably.
I am slowly learning there are different types of asthma. I am also very allergic to horses. I can't go anywhere near them. I also react to manure.
I too am/ was horsey! I'm allergic to everything too, especially timothy hay, had to leave a job once coz asthma so bad. Mould, esp. indoor is major trigger as I'm now housebound( not from asthma), why my house is mouldy is beyond me, now have those hang up bags for wardrobes in lounge where I live, amazing how much moisture they collect. I found Dettol mould spray abs. brill, takes seconds. So basically I have cut out anything that may trigger me, soft furnishings, feathers, curtains etc. so bit spartan but I like minimalist and it really helps.
No horses now 😢but am allergic to my cat , have routine for that too! I take cetirizine occ. even had cat on it re her summer itch allergy to pollen from fields. It's so annoying when you're an outdoor type and even opening the window makes you sneeze or wheeze, esp. damn wood burners. 😡 Hope you find the right help/ meds soon! Good luck!
Hi, I'm also allergic to Timothy Grass. It can be very depressing as an outdoors person to be stuck inside. It might be worth installing mechanical ventilation to keep your home dry, as you say its surprising how much moisture comes from our bodies, cooking and bathing. As a builder I've always been against wood burners they are not eco friendly (the carbon is counted in the country the "kiln dried" wood comes from). They are proven to be carcinogenic and extremely bad for our lungs. Many local authorities in the UK are now limiting the amount of these appliances.
As for Horses I'm sometimes a little naughty and can't help but stroke ours. I'm sure he wonders why I'm so stand off ish. I then have to immediately wash my hands thoroughly. This is only when he's outside I can't be in the stable for more than a minute without a bad reaction. Thanks for taking the time to respond. Take care.
Hi just been dignosed , reg cats , my last cat i had for 18 years indoor cat , Teddy my cat now 6 years and long hair maine coon . Wonder if after sll these years could be allergy to cats , dander etc . Can you get an allergy test to cats done somewhere? Thanks
You can ask your GP for allergy test. There will be a clinic available somewhere in your area. It is usually doen by skin patch testing, or a small injection under the skin. There is a spray called Petal Cleanse you can use to denature the dander of cats or dogs (breaks down the allergen). We looked after my son's dog while he was away and it worked. If you are allergic to cats you would need to clean the house and soft furnishings really well to get rid of any cat fur there too.
Whilst you had allergy testing did they also test for the aspergillus allergy? Since I was investigated for it many years ago I still cannot understand why on diagnosis of asthma - particularly children who are prone to kick around autumn leaves - people aren't warned against farmyards, compost, damp leaves etc from the aspergillus spores.
At least nowadays it's normal to wear masks 😷. TG.
As a horse lover you'll know how vital it is to soak their hay before feeding it to them, it's to protect against mould spores. Animals and humans can be colonised with aspergillus. Most people are ok with it but some are allergic hence a diagnosis of aspergillosis. I used to work with horses, I knew about the spores of course but had no idea they could get into our lungs too.
NB I'm not a doctor but if I were you I'd get tested.
Hi yes I was tested for Aspergillus. I've had two lots of skin prick tests and several blood tests. Like you I think there should be more awareness of the dangers of mould spores in rotting vegetation.
Hi thanks for responding. I can't imagine how difficult it must be without steroids. They have very little effect on my allergies but at least i can use them.
I'm still actively being assessed for Biologics. My GP and Immunology want me put on them but respiratory won't prescribe.
I've recently found that I've been a victim of my own actions. When I'm feeling really bad I muddle through some how. I have my own company so I'm able to take time off so no need for doctors notes etc. Because I've not been "presenting" and not constantly asking for oral steroids (hate them and they don't work for me) I'm not considered far enough along the pathway. I've been told by Immunology I must now start visiting my GP every time I have a bad episode. So i feel like I have to become a burden on the NHS to get anywhere and keep running to my GP. I have to say I'm mightly fed up with this country. So the moral is visit your GP for everything and build up a case in your favour.
Yes I agree seems you have to be just about dying to get Biologics. I tick most of the boxes. Very high IGe, multiple severe allergies, high eosinophil count, little to no benefit from oral or inhaled steroids, no benefit from Montelucast, no benefit from antihistamines, eosinophilic polyps removed, constant ear infections, bad reaction to SLIT, I just don't go to the GP as there is little he can do for me.
There are clinics in the UK to pay privately for Biologics and I can at the moment well and truly afford them but my immunology consultant has strongly advised me to not go down that route for reasons particular to my case. So as my respiratory consultant admitted and put in writing I'm "languishing". Sounds relaxing doesn't it!!!!!!.
I wish you, should I say luck, good fortune, well, on your Biologic path. Just shows how bad this system is in trying to end my response to you and feeling I have to use the word luck!
Hello I can emphasise. As a child I had lots of colds, and mild chesty coughs, but didn't develop allergies until I reacted to penicillin in my early twenties. I am now in my 70s. Since then I have gathered multiple allergies. We too moved to the countryside, thinking it would be 'healthier' with less pollution then I developed an allergy to birch followed by moulds and fungi 😁
My father smoked a pipe and developed emphysema and died of lung cancer. I've never smoked, but developed asthma - made worse by allergies such as pollens, moulds and worsened by irritants; diesel fumes, bonfire smoke, paint, chemicals. It does get you down at times. I have a number of food allergies and am allergic to dogs and cat fur. One of the hardest things over the years is learning to manage it and then developing more, and having to work out how to do the best with more challenges!
We've put in wooden floors to help with dust, mould allergies, used none gloss paint, and keep the house as free from chemicals and allergies as far as possible. I have a couple of hepa air filters to use especially when pollens are high. I think it helps to manage the 'allergen load' as far as possible. I agree with you that the NHS is not geared up to help us continue to be well, and waits until we are at our worse!!
"The Allergy Bible" by Linda Gamlin (with input from Prof. J. Brostoff) is a good guide to understanding allergy.
You are fortunate to be seen by an Immunology Department! My GP manages my health issues, and I often take him research information. I'm on fostair, ventolin as needed, antishistamine, montelukast. I do take nortrptaline (similar to amitryptaline) for nerve pain and other medication for other conditions. I find using a nasal wash twice a day, and gargling, helps with rhinitis and sore throat, mucus. Plus I take omeprozole as I have reflux (GORD).
I am currently trying load dose immunotherapy (LDN) for inhalants. It does help but it isn't easy to manage, as the dose needs to be titrated and it is only available privately. I simply got to the point of needing more help and not getting any from the NHS.
Thanks so much for your detailed response. Your allergies sound similar to mine. This time of year is particularly miserable for anyone who has mould allergies. As a house builder I was able to build our current house with hard floors and maximum mechanical extraction. Like you we are methodical about allergens including hepa filters and vacuum.
It took me many years of gradual deterioration for my GP to finally "give up" and refer me to immunology who have been brilliant. Like you I've had to become an amateur expert on my condition. Unfortunately immunology are constrained by respiratory as some of the possible drugs that may help can only be prescribed by respiratory.
Something I feel very very unfairly holds me back with respiratory is that as a builder I've lived a very active life. I've also excelled at sport and was a very very fit individual by anyones standard. Anyone meeting me for the first time sees a big able looking guy. A relative of mine with very similar problems said we both look like walking b.....dy miracles.
The reality that people don't see is the days that I spend stuck inside fighting for breath. As I said in earlier responses immunology have recently tried me on immunotherapy but I had a bad reaction. A family friend GP did her best to try and stop me but I was that desperate I gave in and tried it. Her fears seem unfortunately to have come to pass and immunotherapy has increased my sensitivity. As a matter of course we do not discuss health with our GP friend its not fair but she does offer help and advice at times.
Like you I'm getting very close to going private. My GP told me what we all know, the NHS is great for emergencies or easily prescribed illness but terrible at the in-between. Take care.
Thanks for the reply. It is hard for people who see us when we are out and about to realise how debilitating it can be on days when we can't get out, but are stuck indoors struggling!
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